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Saturday, January 3, 2015 2:29 PM CST

ALEX UPDATE!!!! Alex is EXTREMELY excited to say that he has received a card FROM EVERY STATE IN THE UNITED STATES OF AMERICA!!!! He love, love, loves looking at his maps with all the dots all over them, and talking about all the cards that he has received. He is still receiving them and not one day has gone by since the end of October where Alex has not received a card on a mail day!!

We returned from a Disney vacation to find 211 cards and packages waiting for Alex!! He was very sad to leave Disney (what 13 year old wouldn't be!) but was sooooo excited when he saw the table full of love! We got home at 11:30 PM and he wanted to start mapping right away but I said WOAH boy! We have now opened about half and will continue to update until they are all gone. For now, THANK YOU all SO very much for making Alex feel extra special! You didn’t have to, but you reached into your heart and embraced our boy and we are very grateful to you all.





As of today, Alex has received 580 cards from ALL states! Alex has received cards from NINETEEN countries (USA, Canada, England, France, Germany, Holland, Iceland, Ireland, Italy, Japan, Mexico, Spain & Bora, Bora, Taiwan, Singapore, Israel, Dubai, Australia, and Malaysia) and possibly one other world (Alpha Centauri B) The original FB post has been shared 1,729 times!

If you have not seen the WCAX segment yet, or just want to watch it again :) it is here http://www.wcax.com/story/27458320/a-birthday-wish-heard-around-the-world

SOME of the cards Alex has received since his last update are as follows:

Alex’s friends at WCAX sent him a big envelope. Alex was REALLY curious about what they might be sending. Inside was the most amazing HUGE handmade card that tells the story of his card journey. I took a close up so everyone could see the detail in it, really amazing, but the picture does not do it justice! Inside, it is signed by everyone at the station!! AND they included a DVD of the broadcast so Alex can have it forever!! YAAAY :) Then, there were stickers inside too!





Alex received a COCONUT from DeeDee C in ….where else…. Hawaii! Alex thought this was just the coolest thing. Seriously, a coconut mailed just like it is, and with a really neat painting on it of North Shore Hawaii!!



Annie M in Somerville, TX sent Alex a card with a sweet letter and a box with a hilarious stuffed turkey that vibrates and sings Turkey in the Straw. Alex cracked up!



Jason, Tyler & Rachel R in College Station, TX surprised Alex with a BIG BOX and card! Inside the box was tons of stuff from the Fighting Texas Aggie’s (Texas A&M!). Inside the box was a A&M Sweatshirt (which Alex insisted on putting on immediately!) an A & M, hat, AND an A&M blanket! Alex was very excited :)



Cathy C from Brighton, CO sent Alex a cute Snoopy card!

Tamara T from Sussex Consortium/Mariner Middle School in Lewes, DE sent Alex a package. She is a special ed teacher and gave her 13-14 year old students a writing assignment to send a card to Alex. Enclosed is a book that the kids made, and it is TOTALLY cool! It has information all about their County with maps, information about their industries, with pictures, their recreational activities, and letters! Alex really thought it was quite wonderful! AND there were stickers, a ruler and a fun bendable pencil inside too!

Roxi H from Farmington, MN sent Alex a sparkly 13 card!

Alex’s buddy Karina sent Alex a card from Wayne Airport in California. This is named after John Wayne!

Mikie & Gaston S in Carlsbad, CA sent Alex a sparkly 13 birthday card. Alex thinks Gaston is a REALLY cool name since it is the name of the bad guy in Beauty and the Beast!

Erin & Aron, as well as Fonzie, Potsie, and King, sent Alex a card from Bardstown KY. Inside were two postcards, on of Kentucky and one of My Old Kentucky Home in Bardstown, KY. Alex loved the kitty and doggie card!

Sarah K sent Alex a card from Boston, MA. Inside was a map of the metro system there. Sarah is graduating from Simmons College soon!

Alex’s buddy Karina sent Alex a card from Mission Viejo in California. This is the largest master planned community ever build under a single project in the USA!

Carla S from Bingham, ME sent Alex a card! They are pretty close to Canada and near the Kennebec River Corridor. Alex was very surprised to find $5 in his card!

Alex received a card from Tom & JoAnn G in Jonesboro, AR. Alex loved that the puppy on the card is white like all of our puppies :)

Debbie P sent Alex a card from Greenwood, IN! Debbie is a fan of the American Eskimo dog, just like Alex! Alex learned that they have the Indianapolis Colts, the Pacers and host the Indy 500 there!

Alex received an anonymous card from Northville, NY and was so surprised to find $13 dollars inside!

Aiden G & Teresa from Ponderi, TX sent Alex a card with a picture of Aiden inside! Aiden is 7 and has 3 dogs, 1 fat cat, 6 frogs and 2 turtles!

Deborah R from Fayetteville, PA sent Alex a card. They live about 20 minutes away from Gettysburg and they are surrounded on all sides by Michaux State Forest!

Jacque J from Thornton, CO sent Alex a fun card!

Laura B from Benton, AR sent Alex a cool dog card. Laura is friends with our buddy Chris Lamotte. Alex learned that Arkansas is the home state of President Bill Clinton and his library is in Little Rock. Arkansas has the only public diamond mine in the world and visitors can search for diamonds and keep what they find. We are ready to go there!! :)

Chrissy, Jeff, Shane & Haley R from West Lebanon, NH sent Alex a neat Avengers birthday card that turns into a poster and glows in the dark!

Elaine K from Cherry Valley and Cooperstown, NY sent Alex a card with fishing dogs on it! Alex learned that Cooperstown has the baseball hall of fame and that Elaine is a Redsox fan like Alex!

Linda H from Maricopa, AZ sent Alex a card. Alex learned that where Linda used to live in Chandler, AZ they have an annual OSTRICH festival. Alex thought that must be really funny!

Tony & Stacy M from Orem, UT sent Alex a birthday card!

Ed S from Plattsburgh, NY sent Alex a postcard with a photo depicting the 15th U.S. Infantry who served during the Battle of Plattsburg in 1814 on it.

Joseph, JoJo and Sharon S from Concord, MA sent Alex a really funny Otter joke card!

Bettie I from Evergreen, AL sent Alex a card with a bookmark in it!

The Stevens family sent Alex a card from Utah with beautiful pictures on the front.

Tracy, Lisa & Monica H from Fultonville, NY sent Alex a birthday card!

Dawn J in San Clemente, CA sent Alex a huge box. Inside was a card and a Captain America Helmet and Shield! Alex was VERY excited :D

The Stewart family from Bridgeport, WV sent Alex a birthday card!

Julie M from Wilmington, VT sent Alex a letter and a map of Wilmington in it. She said that if we were ever in Wilmington, she would love to give us a tour :)

Shirley & Russell sent Alex a postcard from Long Beach, CA!

Drew, Chey, Laura, Marcus & Jean-Marie C from Chesapeake, VA sent Alex a birthday card!

Alex received a card from Tina, Mike, Cooper & Caley C in Sanford, ME and there were lots of pictures in it! Tina owns Loving Memories Photography and offered to photograph Alex :) She visits her siblings in VT often. Alex thought it was really funny that they call Old Orchard Beach OOB!

Haven H from Beecher Falls, VT sent Alex a card! Haven is the Commander of Sons of the American Legion Suadron #47 and is also a CBP officer.

Bonnie W from Swanton, VT sent Alex a card with a lucky $1 coin inside!

Alex received a card from Lorraine & Dave F in North Springfield, VT! Inside, Alex was surprised to find stickers and $10! Lorraine & Dave’s daughter Michele went to high school with me :)

Stella (9) & Lexi (15) sent Alex a funny dog card from Essex Junction, VT!

The Haywards from St. Johnsbury, VT sent Alex a funny spinning gerbil card! Alex loved the Rudolph and Bumble postage stamps on the card!

The Browning’s in Venice, FL sent Alex a singing card with their picture on it! They look pretty happy to be in sunny Florida. They are originally from Barre, Vermont!

Sheila, Tiana, Ryan & Ricky G from Barre, VT sent Alex a birthday card. They are friends with Alex’s BFF’s Gretchen, Allie and Jess!

Alex received a postcard from Bear, Jeff, Ryan, Mark, Tiffany and Trey A in TAIWAN! Alex loved that they signed all their names in Chinese!

Staci S from St. Johnsbury, VT sent Alex a birthday card!

Wendy & Gary and their kitty Mischief from St. Johnsbury, VT sent Alex a Mickey Mouse card!

Carol C, from Vergennes, VT sent Alex a Mickey Mouse card! Alex learned that this is Vermont’s smallest city!

Debra L from Lowell, VT sent Alex a card and told Alex she saw him on TV. She lives only 15 miles from Jay Peak!

David & Konnie B from North Platte, NE sent Alex a card! Alex learned that this is the home of Buffalo Bill and also the home to the largest railroad yards in the world. Dave is a railroad engineer, which Alex thought was pretty fabulous!

Cameron & Jeremy H from Greenfield MA sent Alex a card with a cool pair of light up glasses in them! Alex was surprised to find $20 inside too! Alex learned that the base of the Statue of Liberty was designed by Greenfield native Charles Stone!



Mike B from North Platte, NE sent Alex a birthday card. Mike also told Alex about the railroad yard there and that they are known as Railtown USA. Mike works for WalMart in a grocery warehouse there!

The Young’s from Lawrenceburg, KY sent Alex a card! Alex learned that Kentucky is also known as the Bluegrass State and that they would love to visit Vermont someday!

Alex received a card from Sara B in St. Louis, MO with a cute Terrier like our dog Moon on it!

Kevin S from Spokane, WA sent Alex a letter. Kevin has a little girl with mito so knows a lot about it. Alex learned that Spokane Falls is in the center of the citu and runs right through the downtown. It is one of the largest urban waterfalls in the US. Alex was surprised to find $1 inside the letter!

Deb & Her Great Dan Duke sent Alex a card from West Virginia!

Michelle & Randy sent Alex a postcard from North Dakota!!They have 150 cows, all with calves and they grow corn, barley, wheat, oats & flax!

Bobbi & Sandi C sent Alex a package from British Columbia, Canada! Alex was surprised to find Canada Stickers, napkins and a Canadian patch inside! I used to work with Sandi before she retired!



Brian L & Deb Newman sent Alex a card from Wheatley, Ontario, CANADA! Brian and Deb are friends with our buddy Angel Kirkland and they have done a Mito walk that Kirk and his family started to help research Mito!

Alex received a card from the Judd’s in SINGAPORE!! Their son Jeb drew the cool star wars Christmas picture on the front of the card :D

Beth C sent Alex a card from Jerusalem, ISRAEL!! That was fun to map! Beth is our friend Lisa Campbell’s sister!

Marie D sent Alex a card from Dubai! She said she is a flight attendant with United and was on a layover. She got to see Burj Khalifa, the tallest building in the world! Alex thought the pictures of that were amazing!

Sally F from Whorouly, Victoria, AUSTRALIA sent Alex a card!

Tracey J (Angel Kirk’s Aunt) sent Alex a card all the way from Toronto, Ontario, CANADA!

Debbie T sent Alex a card from Alberta, CANADA!

Carol-Lynn and Rich K who live in North Springfield, VT sent Alex a card from JAMAICA!

Bernie and family sent Alex a nice card with lots of birthday glitter inside all the way from West Dublin, IRELAND!

Janice sent Alex a card from Alfreton, Derbyshire ENGLAND! Alex loved the double decker bus on the front!

Alex got a card from Melbourne, Victoria, Australia!

Alex received a card from Lynette and Adam in MALAYSIA! The card has a really neat picture of the Menara Kuala Lumpur, one of the tallest buidings there, and it is really beautiful. They have tropical weather! Lynette wrote Alex a really beautiful note thanking us for the opportunity to make Alex feel special…and boy does he!!

Asa sent Alex a card from MALAYSIA! She is originally from Persia (Iran)! Alex learned that their map looks like a cat, they have four seasons, great rugs and caviar. Alex is going to skip on the caviar after I told him what it is :D

Susan W, Kara & Bella sent Alex a cute dog card from Jonesboro, Arkansas!

Barbara R sent Alex a card from Middletown, RI! Alex was very surprised to find $5 inside! Barb is my BFF Chris Edwards mom!

Alex received a cool sports car card from Carolyn S in Jacksonville, FL.

Alex received a box from the Energy Corporation of America in Charlestown, WV! Inside was a treasure trove full of things such as a weekly planner, an ECA Hat, an ECA T Shirt, water bottle, pens and a pin, and an under Armour shirt. Alex has no idea how they fit all that into the box, but he was excited they did!







Linda S sent Alex a Christmas card from Morton, Washington!

Alex received a card from the Kurtz family in Brighton, CO!

Alex received a package from Dave Rogers at Joe Gibbs Racing in Huntersville, NC! Inside is a SIGNED Kyle Busch poster and a other poster of Kyle in his car. Alex was PSYCHED!

Bettie I sent Alex a Christmas card from Evergreen, AL!

Alex received a card from James & Sandra H in Cheyenne, WY! Inside were some great postcards from Wyoming showing their wildlife, and mountains. Alex loved the one of the Bison!

Jennifer B from Lafollette, TN sent Alex a Christmas card!

The Miller family from Greencastle, Indiana sent Alex a card! Alex learned that John Dillinger’s largest bank robbery was at the Central National Bank in Greencastle and was one of two banks he robbed that day in 1933!

Lisa O sent Alex a really cool 3D wolf card from Waitsburg, WA. She has two horses, one of which is a miniature!

Alex received a card from Sonia D in Abilene, TX! Inside, Alex was happy to find brochures about Frontier Texas, the Abilene Zoo, Canyon Texas Perot visitors guide and an Abilene visitors guide!

Peter S in Georgetown, KY sent Alex a really cool Bulldog card! Peter is a Marine SgT Mag. He told Alex he thought Alex was brave and courageous. Alex thought that was pretty cool! Inside the card, Alex was happy to fine two Marine Corps stickers!

Macy in Cleveland, OH send Alex a birthday card. She said she lives about 10 minutes away from the Cleveland Browns Stadium and it gets VERY loud on Sundays! Alex was surprised to find Spiderman stickers in his card!

Kathy M in Kimberly, Idaho sent Alex a card! Alex loved the butterflies all over it!

Gordon, Virginia, Theodore & Bobby sent Alex a card from Gilsum, NH. Alex was happy to find a Target gift card for $15 inside! It was really neat because the gift card lights up. Gordon and Virginia are Alex’s great Aunt and Uncle <3

Alex received a card from Jennifer T in Walnut Creek, CA! She has two dogs, a wiener dog and an American Eskimo and they are both 13!

Kim, Kim, Chris and Caden M in Tuscumbia, AL sent Alex a cute Christmas card!

Judi, who lives just south of Buffalo, NY sent Alex a card. Alex learned that they got 6 feet of snow in 3 days and their school had FOUR snow days in a row! WOW!

Jan F sent Alex a post card from Emmett, Idaho. Their families had 2 pilgrims on the Mayflower and are descendants of the 2nd signer of the Declaration of Independence. Pretty neat!

Alex received a cute cow card from Reading, MA!

The Norelli Family in Reinholds, Pennsylvania sent Alex a huge Christmas card with a sparkly snowman on it. Inside was lots of information about Lancaster including maps and travel information! They live only 45 minutes from Hershey, and we LOVE it there :D

Jeremy, Debby & Charleigh from Ridge Manor, FL sent Alex a package. Inside was a card that said they noticed Alex’s Robo Buggy didn’t have any lights….and inside the package they gave him two really cool bike lights. Alex, of course, insisted on putting them on his chair immediately and he LOVES them. I don’t know why we didn’t think of that, great idea! :D







Keita M sent Alex a card from Hilo, Hawaii!

Kathy G sent Alex a card from the “Go Big Red” state of Nebraska!

Eleanor C sent Alex a really cute bear and penguin Christmas card from East Middlebury, VT!

Michele D sent Alex a card from Alburgh, VT! Alex learned that the sand in the Alburgh Dunes State park came from a layer of glacial till when the last glacier melted!

Alex received a card from Idaho, the state of the potato!

Chris, Joy, Nich, Jonathon & Marshall M sent Alex a card from Graniteville, VT!

Fasika P sent Alex a card from Williamstown, VT. The card came from Fasika’s birth county, Ethiopia. Fasika said that the Ethiopian calendar is seven years behind us. WOW!

Abby, Jason, Bella & Ellie sent Alex a really cool pop up card from Peacham, VT. Abby is a nurse and Jason is a logger. They sent some really cool pictures of the logging equipment at work which Alex really liked!

Alex received a card from the Lindsey’s in Marysville, WA!

Conrad & Laurie S in Tempe, AZ sent Alex a package for his birthday. Inside is a neat Arizona activity book that is full of fun facts and activities! Also inside were really fabulous postcards of Arizona, the Grand Canyon, Arizona symbols, and a map of Arizona! We have LOTS to do :)

Thursday, November 27, 2014 5:11 AM CST

HAPPY BIRTHDAY ALEX!! Know what Alex and his family are thankful for today (and every day?) YOU!! Today is Alex’s 13th birthday, and YOU have helped to make it such a wonderful and memorable one! He has felt the love and kindness pouring over him for a whole month and this experience will be in his heart forever. Thank you!!

Happy Thanksgiving to you and your family!

We are feeling especially grateful on this Thanksgiving birthday. Thankful for all of Alex’s new friends and this amazing experience, and of course Alex’s continued good health!

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow. ~Melody Beattie

The mail yesterday was nothing short of incredible! Alex was so darned excited he could barely contain himself! As of today, Alex has received 476 cards from 46 states! Alex has received cards from THIRTEEN countries (USA, Canada, England, France, Germany, Holland, Iceland, Ireland, Italy, Japan, Mexico, Spain & Bora, Bora) and possibly one other world (Alpha Centauri B) (y) The original FB post has been shared 1,737 times!

If you have not seen the WCAX segment yet, or just want to watch it again :) it is here http://www.wcax.com/story/27458320/a-birthday-wish-heard-around-the-world

If you happen to know anyone in Idaho, Nebraska, North Dakota, Wyoming (ONLY 4 LEFT), Alex would LOVE to get a card from these states as they are the only states he has not received a card from!


Alex LeFevre
16 Howe Street
Williamstown, VT 05679


And of course, we are still updating http://caringbridgeclassic.org/vt/alex/ so everyone can join in the fun!

On Wednesday, November 26, 2014 Alex received the following cards!




From Carrie G in Graniteville, VT Alex received a card with 3 dog treats inside. Carrie is a friend of Alex’s and said that she sent the treats because she knows how much he likes his dogs Koda, Moon and Sophie. Alex CRACKED up at getting dog treats! The dogs were delighted!

Peter & Bev O sent Alex a super cute card from Williamstown, VT. Alex learned that Bev used to work with his dad (Scott) at Capital City Press even before Alex was born! Alex was surprised to find $13 in his envelope!

Becky J in Highgate Springs, VT sent Alex a neat dog card. Alex was surprised to find a scratch off ticket inside!

Alex received a card from Suzanne P from Middlebury, MA with lots of candles on it! She sent Alex some pictures and Alex learned that there are cranberry bogs there. Alex loves cranberry sauce!

Steve, from Stratford, CT sent Alex a 3D noisemaker card!

Alex received a card from Olivia C (age 11) and her grandmother Mary and Mickey too in in Canaan, NH!!

Alex received a cake and icecream card from a friend in Waterbury, CT!

Carol, in East Hampton, CT sent Alex a Superhero card!

Mrs. Cox sent Alex a sparkly balloon card from Graniteville, VT!

Alex received a box from the Milton Youth Bantam Hockey Team in Milton, VT with a singing card! Alex was shocked that inside was a picture of the whole team holding up signs saying Happy Birthday Alex!!! Just for him! Inside was also a “Property of Milton” T-shirt and a very cool hockey puck signed by the whole team!! Alex is going to treasure that :) What a fantastic group of kids!!











Ms. Wulff, Star & Elvis sent Alex a doggie card from Williamstown, VT!

Philip & Nancy H from West Windsor, VT sent Alex a card with a Batman stamp on it!! Alex learned that there is a beautiful covered bridge in Windsor!

Mike and Marcia M from East Calais, VT sent Alex an adorable puppy card! Alex was super surprised to find $10 inside!

Craig, Kasey, Camden & Ryland T sent Alex a hidden picture card from White River Jct, VT! Alex learned that the train station opened in December 1937 and still runs today! Alex LOVES trains, and we have been on that one :)

Alex received a sparkly surfing card from David & Kathi B in Springfield, VT.

Deb &, George S & Sam D in North Clarendon, VT sent Alex a card! Alex learned that they used to live in Williamstown and remember Alex from elementary school!

Alex received a dog card from Brandy in White River, Junction, VT!

Peggy, Tony & Brianna B sent Alex a Clifford the Big Red Dog card from Richland, Hills, TX! Alex loves Clifford!

Alex received a wonderful drawing of the Depot covered bridge in Pittsford Vermont from Kate, Paul and William C of Pittsford, VT. Alex was surprised to find A magnet with Cooley Bridge on it and a magnet of Kamuda’s Country Market and a postcard in the envelope!

Peg McCabe from Northampton, MA sent Alex a card with American Farmland Trust stickers inside!

Alex received a card from Carl W in Clinton, CT! Alex learned that Clinton is also known as the “Bluefish Capital”!

David L from Springfield, VT sent Alex a card! David works as a mailman and went to High School with me :) Alex was surprised to find a check for $15 inside the card!

Fred B from Manchester, CT sent Alex a card with lots of facts written on the outside! He said there would be a pop quiz but Alex said no way! Alex learned that Hartford was founded by Christopher Columbus in 1493 or 1494!

Alex received a BIG tube in the mail from VTrans! He was very excited to open it and even more excited to find that it contained BEAUTIFUL maps!! There was a letter inside from Johnathan Craft, a geographer and map maker and AOT GIS Database Administrator telling Alex that the maps were a gift to add to his collection! The maps are AMAZING and include 1902 and 2014 maps of Vermont, a Town Highway Map of Williamstown and MANY others! Alex was SO thrilled!











Alex received a card a cute dog card from Wayne & Nancy M from Ormond Beach, FL!

Bette K from Pittsburg, NH sent Alex a box! In it was a cool moose card and Murphy the stuffed Moose! Alex LOVES Murphy and especially loves that Murphy has a matching blanket!!



Jillian C in Portsmouth, NH send Alex a T-Rex card! Jillian is friends with Alex’s BFF Jessica T! Alex learned that New Hampshire’s state drink is apple cider. YUM!

Jim & Kathy from Gorham, ME sent Alex a sparkly birthday cake card!

Alex received a card from Dianne R in Norman Park, GA! The card had a neat postcard of Christmas lights over the streets of downtown Moultrie, GA!

Rob, from Watertown, CT sent Alex a cool 3D present card!

Tricia & Ken J of Vermont Fresh Foods in Proctorsville, VT sent Alex a T-Shirt. They make fresh pasta there. Alex loves pasta :)

Mike, Anne, Sarah & Candace P in Pelham, NH sent Alex a birthday card! Alex learned that they are 147 miles away!

Ellen, Tom & Charlotte C from Sutuate, MA sent Alex a funny birthday card!

Alex received an AMAZING letter from VINS (Vermont Institute of Natural Science in Quechee, VT! They selected a Turkey Vulture adopt packet in honor of Alex’s special day and provided lots of information about the Turkey Vulture including a picture! They sent a map with of their trails (some of which are perfect for Alex’s wheelchair) and suggested a spring visit. They even included 4 tickets and coupons for the gift shop! Alex is excited!!

Carol M from Montpelier, VT sent Alex a birthday card! Carol works with Alex at school. Alex learned that Montpelier is the smallest state capital, both population and size, in the country!

Pat, Terry, Colton & Trent sent Alex a sparkly card from Swanton, VT!

Courtney B & Matt L sent Alex a card from Plainfield, VT. They said that Alex’s smile is amazing, which made him smile :)

Charlene R from Richmond, VT sent Alex a birthday cake card!

Mrs. Olsen from Williamstown, VT sent Alex a cute alligator card! Mrs. Olsen used to teach Alex math in elementary school…. He liked her a LOT anyway <3

Alex received a card from Shelley N in Morrisville, VT! She said to keep smiling his beautiful smile!

Deborah P and Rose S sent Alex a Birthday card from Rutland, VT!

Reggie B & Margaret N in Roxbury, VT sent Alex a cute card!

Alex received an envelope from the Sunday School Kids at the Rutland United Methodist Church in Rutland, VT! The children made him lots of nice cards and Alex loved them!



Shell B from Roxbury, VT sent Alex a funny card!

The grade one and two children at the Craftsbury Elementary School in Craftsbury, VT sent Alex cards that they made! Alex loved how colorful they are!

Linda B in Barre, VT sent Alex an adorable puppy card!

Sean, Alice & Ashton P sent Alex a teddy bear card from Baltimore, VT! Alex learned that the town has NO paved roads, they are all dirt and in 2010 the population was 244! WOW!

Alex received a super Spiderman card from Jacki C, a Teacher at WMHS, from Gaysville, VT!

Joan & Marshall V from Thetford, VT sent Alex a hilarious rooster card!

Adam Steward from Fair Haven, VT sent Alex a package! Inside is a signed and numbered 2014 Vermont State Junior Bass Federation Champion Adam Stewart License plate. Alex thought that was really neat and there were two signed pictures inside too! Adam’s dad said that maybe in the spring Adam could take Alex fishing for bass! Alex was excited and LOVES to fish! Looks like Adam will be travelling to Arkansas in August of 2015 to fish in the National Championship. We wish him good luck!

Tanner R and Skyler W sent Alex a card from Williamstown, VT!

Alex received a funny card from Barb & Brian D in Northfield Falls, VT!

Janet & Jim C sent Alex a card from Bristol, VT! I went to undergrad with Janet! She told Alex that she will always remember his amazing smile ,# Alex learned that Bristol has a huge rock as you are coming into town with the Lord’s Prayer on it!

Linda B in Barre, VT sent Alex a sparkly card!

Alex received a box from Sybil J in Cranston, RI! Inside was a Del’s Lemonade cup with lemonaid inside! Sybil said that Del’s lemonade is famous in Rhode Island. There were also two postcards with fun facts! Alex learned that Rhode Island is the smallest state with the longest name. Their official name is “The State of Rhode Island and the Providence Plantations.” WOW!

Alex received a really cool card from Erin R in Proctor, VT!

Connie K sent Alex a cute puppy card from Newport, VT! Alex learned that Lake Memphremagog is ½ in Newport and ½ in Canada!

Michele, Ryan & Noah C of Milton, VT made Alex cards with a picture in them! He loved them!


Rich, Yvonne & Kyler Q from East Calais, VT sent Alex a fun musical card that lights up! We used to see them at therapy and they got to see Alex fitted for his amazing stand up wheelchair :)

Sherri N from Plainfield, VT sent Alex a sparkly puppy card!

Rod, Carol, Ryan & Chris C from Barre, VT sent Alex a cute card with a picture of goats on it!

Alex received a card from Perry & Kathy G in Barre, VT. The card had a picture of Belhurst on Seneca Lake. Alex learned that their son was married at the Castle and Alex’s BFF Allie was there!

Laura H from Stratton, VT sent Alex a card with lots of facts in it. Daniel Webster once spoke in Stratton and it is estimated that 15,000 people came to hear him speak! Wow!

Hunter, Keegan, Haylee, Adison, Savannah & Tianna T. in St. Thomas Ontario CANADA sent Alex a card! Alex learned that Thomas the Tank visits every summer!

Alex received a box from Linda D in Barre, VT. The card is a cute sparkly dog card and says “13 items for your thirteenth.” Alex was surprised to find 13 matchbox cars in the box! His favorite is the Batman car!



Now that Alex's birthday is here we are going to wait a couple weeks until he receives any other cards and do a final update then. Thank you for sharing this wonderful journey with Alex and with us!!

Much Love,

Alex LeFevre & Family

Wednesday, November 26, 2014 3:22 PM CST

ALEX UPDATE!! Alex has such fun counting how many envelopes and boxes he gets… he actually squeals <3 !! He continues to be amazed by how many are being delivered and by the wonderful things people are sharing!! Alex has received 411 cards from 46 states! Alex has received cards from THIRTEEN countries (USA, Canada, England, France, Germany, Holland, Iceland, Ireland, Italy, Japan, Mexico, Spain & Bora, Bora) and possibly one other world (Alpha Centauri B) (y) The original FB post has been shared 1,737 times!

Boy, a LOT of people watch WCAX :) So many people mention to Alex that they saw the story, he is feeling like a celebrity. I am not sure how many other stations have picked up the story now, but there are 5 that we know of!
If you have not seen the segment yet, or just want to watch it again :) it is here http://www.wcax.com/story/27458320/a-birthday-wish-heard-around-the-world

If you happen to know anyone in Idaho, Nebraska, North Dakota, Wyoming (ONLY 4 LEFT), Alex would LOVE to get a card from these states as they are the only states he has not received a card from!


Alex LeFevre
16 Howe Street
Williamstown, VT 05679


And of course, we are still updating http://caringbridgeclassic.org/vt/alex/ so everyone can join in the fun!

On Tuesday, November 25, 2014 Alex received the following cards!



Eleanor C in East Middlebury, VT sent Alex a box and an adorable card with googly eyes! Alex was surprised to find yummy Hershey Kisses and Lake Champlain chocolate inside the box!

Alex received a kitty cat card from Mary, Jerry, Matt & Mariah G in Montpelier, VT!





Christina, Charlie, Michael, William, Andrea, Steve B and their 5 dogs in Roxbury, VT sent Alex a card! Alex learned that the state flower is the red clover!

Wanda G from Burlington, VT sent Alex a Boston Redsox Card. That made him smile!

Dianne M from Colchester, VT sent Alex a Gobble till you Wobble Turkey card! When you open it, the turkeys tail feathers wiggle! Alex thought that was really funny! I have worked with Dianne for 6 years!

Alex received a really neat holographic fish birthday card from Joe Carroll and Gina Bullard at WCAX! Alex learned that channel 3 is family owned and just celebrated 60 years in business! Alex also learned that during the war of 1812 there were 5000 troops stationed in Burlington, more than the population of the city!!

Mason S (age 7) from Burlington, VT sent Alex a card with balloon drawings on it! Very creative!

Elizabeth P from Bristol, VT sent Alex a card. She said she saw the story on WCAX and has never sent a stranger a card before, but wanted to this time!! Alex was glad she did :)

Rich & Joan H from West Glover, VT sent Alex a birthday card!

Alex received an envelope from Chris & Maria B in Warren, VT! They are not far from us on the map and they have cats and chickens! Inside the envelope, Alex was excited to find a Nascar DVD AND a DVD with all 4 Free Willy movies on it!!

Jay B from Salt lake City UTAH sent Alex a Box! Inside, Alex was surprised to find Pro Organic Snack Bars! Jay moved to Utah and now works at ProBar. He is originally from Barre, VT and is friends with Alex’s BFF Jessica T! Alex learned that Utah is the Behive state! Jay included a postcard with beautiful pictures of Utah!

Alex received a card from Nicole C in Essex Junction, VT! She said that Alex is a gift (we 100% agree!) and that his story warmed her heart :)

Jessica T from Williamstown sent Alex the cutest polar bear card! The polar bear raps and its mouth even moves! Alex wanted to hear it over and over!

Shannon P in Barre, VT sent Alex a pretty poodle card!

Alex received a box from The Pastor family in Essex Junction, VT. Inside, Alex was delighted to find a light up earthscape! Alex can use the remote control to light up all the city lights! Fun! It came in a big sack like Santa has, only blue. Very cool!

Alex received a birthday cake card from Daniel R in Williamstown, VT!

Elaine R from Saint Albans, VT sent Alex an adorable kitty cat card!

Alex received a card from Christine B in Montpelier, VT! Christine used to work with Alex at Williamstown Elementary School!

Danny & Joann L from Washington, VT sent Alex a Jake and the Neverland Pirates card! He loves that show :)

Alex received an adorable singing card from Sharon B in Sheldon, VT!

Kathy M from Milton, VT sent Alex a sparkly card!

Mary G from Milton, VT sent Alex a birthday card and told him he was an inspiration :) Alex was surprised to find $13 in his card! Alex learned that Milton has about 10,000 on the shores of Lake Champlain!

The Macmurtry family in Colchester, VT sent Alex a MAP card! Even the envelope is a map, very cool! Their son, David who was born 9/19/2014 has a birth story very similar to Alex’s. We were so very thankful that Alex’s story could inspire this family and give them hope. We know that David is going to continue to AMAZE everyone!

Sharon B in Grand Isle, VT sent Alex the funniest chicken card. Alex was Laughing! She also sent postcards of Burlington an one of Lake Champlain. Alex learned that Lake Champlain is 10 miles across at its widest point and it takes the ferry an hour to cross!

Thomas & Marcelle L from Colchester, VT sent Alex a colorful birthday card!!

Alex received a card from Michelle D in Barre, VT!

Gaye Lincoln in Northfield Falls, VT sent Alex a card! Alex was surprised to find $10 inside! Alex learned that he shares a birthday with her brother, sister AND aunt!

Noelle S. (age 4) from Burlington, VT sent Alex a super special birthday card and she drew a picture!

Alex received a puppy dog card from Shimmy C in Milton, VT. She thought the story was really nice on TV and told Alex that her parents got married on the same day as his birthday in 1946! Alex was really surprised to find a check for $13 in his card!

Chery P in Burlington, VT sent Alex a neat lighthouse card. She saw Alex on TV!

Kathy & Mike P from Jericho, VT sent Alex a cool 3D card and a photo of Alex’s BFF Allie Kittredge when she was 2 ½! Alex thought she was the CUTEST (and still is!). Alex was super surprised to find a scratch off ticket in the card!

Carol & Fred C in Duxbury, VT sent Alex a snowman card! Carol loves maps too and sent Alex a map of the world!!!

All of the Folks at Kinney Drugs in Barre, VT sent Alex a card that sings “Celebrate!” He thought that was pretty cool. They have know Alex for…well…. Just about 13 years now ;) Alex was psyched to find $13 in his card!

Penny C from Bullhead City, AZ sent Alex a sweet card!

Vicky, Chuck & Lizzie sent Alex a card from Murrells Inlet, South Carolina. They said it is a great place for fishing and enjoying the coast!

Karina sent a card from California with the Legend of the Sand Dollar on it!

Steve & Kathy K sent Alex a sparkly 3 D card from Red Bluff, CA!

The kids at the Ferrisburg Central School in Ferrisburg, VT sent Alex cards! Ms. C heard about Alex and her class wanted to help! Alex thought the cards were very nice!

Alex’s friend Grace T from Williamstown, VT sent Alex a dancing pickle card! It made him laugh!

Mark, AJ, Alex & Danielle F from Washington, VT sent Alex a card painted by AJ! Inside Alex was happy to find colored Spiderman pictures and one of Doc from Cars!

The Beaudin’s from Graniteville, VT sent Alex a cool card that opens into a cake and plays music! Inside the envelope was also a light up snowball and a Rudolph that has a light up nose and sings, as well as a Dino Transporter truck! Alex was excited!

Ms. T’s (AKA Alex’s BFF Jessica) class at the South Royalton School sent Alex a HUGE birthday card that they made FULL of fun facts, some of them with the yuck factor…right up Alex’s alley :) Alex learned that the FDA permits up to 5 WHOLE insects per 100 grams of apple butter…. Ewwww! Also in the envelope was a snowman pencil! Alex thought it was neat!

Alex received an envelope from the folks at the Northfield Savings Bank at the Shelburn Road Branch! Inside was a birthday card, a pig keychain and a flying pig pencil! Alex can’t wait to take that to school!

Dianne Lashoones from Rhythm of the Rein in Marshfield, VT sent Alex a birthday card and included pictures of Alex on Lightning when Alex used to go to hippo therapy. Alex loved that horse and loved hippotherapy. Sadly, he had to stop when we found out Alex was allergic to horses!! He LOVED the pictures!!

Lori S in Wilder Vermont sent Alex a card and he was psyched to find a world map puzzle in the box!

A friend in Mayo Maryland sent Alex a card with lots of facts about Maryland. Alex learned that in 1844 the first telegraph line in the world was established between Washington and Baltimore!

Alex received the biggest birthday card he has ever seen from Carter (age 9) Jillian (age 5) Shanon and James in St. Albans, VT. Alex thought it was amazing! Alex learned that there is an F-16 fighter jet at the Air National Guard named after Swanton, VT. They even put in pictures!!







Anna & Chad S from Londenderry, VT sent Alex a birthday envelope with a wonderful picture that Oliver drew! Alex loved it. Alex was surprised to find a Vermont All-State Cow Tipping Team sticker AND an iTunes gift card for $25! He wanted to pick out a new game immediately!! AHHHH 13!

Tuesday, November 25, 2014 8:08 PM CST

ALEX UPDATE!! A whole bin full of cards!! Alex was shocked! WOW!! Alex has received 363 cards from 45 states! Alex has received cards from THIRTEEN countries (USA, Canada, England, France, Germany, Holland, Iceland, Ireland, Italy, Japan, Mexico, Spain & Bora, Bora) and possibly one other world (Alpha Centauri B) WOW! The original FB post has been shared 1,735 times!

I got contacted by Joe Carroll (the wonderful videographer who helped make Alex's story for WCAX) today and he said that the WCAX story was sent to CNN. At present, TV stations in Albany, Cleveland and Hawaii have it on their websites!!! I also confirmed that it is being shown in Connecticut as well as being talked about on local Public Radio Stations!

From the Hawaii station http://khon2.com/2014/11/24/vermont-12-year-old-gets-birthday-wishes-from-around-the-world/
If you have not seen the segment yet, or just want to watch it again :) it is here http://www.wcax.com/story/27458320/a-birthday-wish-heard-around-the-world
There was an all school assembly at Alex’s school today and he was very surprised that they played the whole WCAX story!! Then, his class threw him a Frozen birthday party with a cake!!! A Million bucks is what my boy is feeling like….all because of YOU and all of the generous souls (and there are MANY) in this big wide world!
If you happen to know anyone in Idaho, Nebraska, North Dakota, Utah, Wyoming (ONLY 5 LEFT), Alex would LOVE to get a card from these states as they are the only states he has not received a card from!


Alex LeFevre
16 Howe Street
Williamstown, VT 05679


And of course, we are still updating http://caringbridgeclassic.org/vt/alex/ so everyone can join in the fun!

On Monday, November 24, Alex received the following;


Mary B from Fremont, NH sent Alex a funny biker frog card! She said she fell in love with Alex’s smile…which made him smile!

Gabriel & Hilda G from Tampa, FL sent Alex a birthday card! Alex was very surprised to find a Walmart gift card inside AND a picture of Gabriel & Hilda :) Gabriel & Hilda told Alex that they are both deaf and we were talking about challenges, and how we all can work at overcoming them. It is so amazing the discussions some of the cards lead to!

Alex received an alien card postmarked Johnstown, PA! They even included a guide to their own language on Mars. Alex thought it was really funny that I read it in my best alien voice!

Paola sent Alex a cute hedgehog card from Riverside, CA!

Rosemary B from Chaplin, KY sent Alex a sweet card.

Tim & Debbie C (and Batman & Dusty) from Mount Holly, NC sent Alex a cupcake card!

Alex received a really neat musical card from Abby S. in Falls Church, VA! It plays “I want to rock and roll all night, and party every day” and Alex was rocking out to it! Abby said that growing up in Guatemala, she found a love of books.

Karina sent Alex TWO postcards from Disneyland in Anaheim, CA. Disney is one of Alex’s favorite places too! He loved them both!

Ron & Carol in Easley, South Carolina sent Alex a Birthday card!

Timothy B & Julia P & Zavender the bunny sent Alex a birthday card. They grew up in VT!

Patricia D from South Plainfield, NH sent Alex a Snoopy birthday card!

Trena, Kendra, Tyler, Tanner, Steven, Kyle, Sean & Sierra R from Marion, IL sent Alex a birthday card. Alex learned that Trena has SEVEN kids ranging from 25-5. Alex thought that was funny because we have four kids ranging from 26-3 :) They also have dogs, a cat, 3 ducks, 17 chickens & 2 guineas! Alex was really surprised to find a McDonald’s gift card inside!!

Larry S. Sent Alex an Audubon Mountain Lion card from Lodi, OH!

Sarah at the University of Pennsylvania sent Alex an amazing magical box. I swear, that box just kept filling back up every time we took something out; there was so much in it! Sarah is in college to become a teacher and rounded up so many friends and teachers (well, they can be friends too!) and they all made Alex the most wonderful cards with fun facts about their hometowns! (27 cards by my count!!) But there was MORE! Inside the box, Alex was delighted to find a BATMAN toy that he had to open immediately :) Then there was an amazing activity Atlas that has over 50 pages of activities about each state as well as stickers and lots of wonderful goodies! Sarah should definitely teach 13 year olds because she knows just what they like!!!!





Alex received a card from Patricia D in South Plainfield, NJ. The card has lots of animals on it and Alex leaned that there are many wooded areas, farmlands and a beautiful coastline in New Jersey!

Randy S from Lynchburg, VA sent Alex a card with a map of the US on the front and a heart where Lynchburg is! They have a national D-Day Memorial in town because Bedford lost the most soldiers on the first day. Randy is a Sergeant with the Bedford County Sheriff’s Office and Alex was surprised to find a Bedford County Sheriff’s Office explorer Post patch in the card! He wants me to put it on his jacket right away!!



Meggan & Hugh (age 3) J sent Alex a sparkly birthday card! I went to law school with Meggan!

Alex received a package from Ms. K’s Grade 5 class in Georetown, Ontario CANADA! Alex read every single card and these kids are just SO artistic. Every child had a little picture of themselves on their card so Alex could really identify with who drew it for him! He loved them all!. Ms. K was kind enough to send us some pictures of her class with their cards and Alex thought it was so cool that he was up on the screen in the background, just like he was there with them!! <3











Renee' P, one of Alex's favorite people at his school, sent him a card :)

Matt C sent Alex a card from Clarksville, TN! Alex learned that matt and he shares the same birthday, so HAPPY BIRTHDAY MATT! Alex was surprised to find a gift card in the envelope!

Nancy J from Portland, OR sent Alex a sweet card that made him smile!

Alex received a fabulous fire engine card that sings from the Beecher Falls Volunteer Fire Department in Beecher Falls, VT! They can see (and they cover) towns in NH and Canada as well as Vermont! That is really neat :)

Marcy K from Northfield, VT sent Alex a card. She has a sister with the same birthday as Alex!

Mardie S in Arlington, TX sent Alex a Package. Inside, Alex was delighted to find a cowboy card, a big button calculator with the Longhorns on it, a package of Dallas Cowboys football cards and a Mavericks bandana! Very cool!



Alex received a Scooby Doo talking baseball card from Michelle R in Worcester, VT that made him laugh! Michelle is our substitute mail carrier!

Alex received a cool card from Michall C (age 5) who lives in Maine, and his Nana, Beverly F, who lives in Barre, VT. Beverly was reading Alex’s page to Michall and he wanted to send Alex a card “because he is a special person.” Awwww, sounds like Michall is pretty special too!

The Fair Haven Grade School sent Alex a card signed by lots of students! Alex learned that the high school mascot is the Slater because the slate rock quarries are in that region!

Liz W sent Alex a star card from Clarksville, TN. She lives only 50 miles from Nashville, home of the Tennessee Titans!

Alex received a card from Wendy & John M in Morgan Hill, CA! The nickname there is “Mushroom Capital of the World!”

Bobbi Cook & Family sent Alex a VERY sparkly card from Jonesboro, AR! I used to work with Bobbi!

Alex received a card from Robert & Mary Jane W in Daytona Beach, FL, Home of the great Nascar Races! The card was from Disney’s Cars :) how perfect!

Gilbert C from Colton CA sent Alex a funny dog card! Alex was happy to find Mickey Ears inside with his name embroidered across the back! Yaay Mickey!



Robert & Roberta S from West Lawn, PA sent Alex a cool Spider Man card and he was excited to find stickers inside! Alex learned that Pennsylvania is home of the Liberty Bell!

Tia, Steve & Cora C sent Alex a sweet card from Keeseville, NY!

Julia from Salem, MA sent Alex a fabulous dandelion card! Alex loves to blow them and we have a funny dog Sophie that loves to eat them!

Alex received a card from Steve, Janice, Kevin, Lydia R & Matt S in Menomonee Falls, WI! Lydia is good friends with our friend Chelsea. They are leaders in exporting cranberries and Monroe, WI is the Swiss Cheese Capital of the world!

Gary from Forest City, NC sent Alex a really neat Astronaut card with Alex’s face on the Astronaut. Very cool!



Adrian K from Portland, ME sent Alex a card! Alex was very surprised to find a t-shirt commemorating the 25th anniversary of the fall of the Berlin Wall, as well as balloons and a lanyard! After we explained it to Alex, he was glad that the wall is gone :)



Alex received a card from The Center For Heathcare Ethics at Duquesne University in Pittsburgh, PA! Alex thought the Duquesne University hat that they sent him was perfect!

Monday, November 24, 2014 6:38 PM CST

ALEX UPDATE!! You guys are amazing, fantastic, and stupendous!! Just look at what you have done!! Alex has received 323 cards from 45 states! Alex has received cards from THIRTEEN countries (USA, Canada, England, France, Germany, Holland, Iceland, Ireland, Italy, Japan, Mexico, Spain & Bora, Bora) and possibly one other world (Alpha Centauri B) WOW! The original FB post has been shared 1,722 times!

Saturday, Gina Bullard and the videographer Joe Carroll from WCAX stopped over for a visit. As many of you have already seen, Alex’s humor and spirit shined right through in the piece! Both Gina and Joe were just wonderful to us and we thank them so much for being so kind and for putting together such a wonderful testament to the goodness of people….. that is YOU!! If you have not seen the segment yet, or just want to watch it again :) it is here http://www.wcax.com/story/27458320/a-birthday-wish-heard-around-the-world

If you happen to know anyone in Idaho, Nebraska, North Dakota, Utah, Wyoming (ONLY 5 LEFT), Alex would LOVE to get a card from these states as they are the only states he has not received a card from!


Alex LeFevre
16 Howe Street
Williamstown, VT 05679


And of course, we are still updating http://caringbridgeclassic.org/vt/alex/ so everyone can join in the fun!

On Friday, November 21, Alex received the following;
From Julie, Maggie, Joe and Court W in Eugene, OR, Alex received a card. Alex learned that Oregon is recognized as one of America’s most bicycle friendly states. Alex thought that was cool because he loves to ride his bike!

Angel sent Alex a postcard from postmarked Hartford, CT. Alex really liked the horses on the front!

Ellen and Dan D sent Alex a sweet card from Lynn, MA!

Alex received a card from Rob & Judy W in Roscommon, MI. Alex thought this card was very neat! It has the state on it, and a star for Roscommon, and planets too! They enjoy swimming and fishing there. Alex loves to do both!

Alex’s friend Karina sent a postcard from Irvine, CA. Alex learned that Irvine was named the best run city in the USAA by 24/7 Wall Street!

Edward M from Dublin IRELAND sent Alex a card!

Mark H from East Hampton, CT sent Alex a card with boats on it!

Karina sent Alex a card from Temecula, CA (By the way, at this point Alex squeals and giggles when he hears that Karina sent him another card!) Alex learned that Temecula is famous for its wine and hot air balloon flights!

Alex received a card from Sarah Bachinski in Breckenridge, CO. Sarah is friends with Alex’s aunt Stacie! Alex thought that was cool, and loved the picture of the ski resort there!

Dennis, Tammy, DJ, Cory & Chelsea R sent Alex a funny dog card from Homer City, PA!

Cynthia & Max A from Chino, CA sent Alex a card. Alex learned that Chino has a population of over 80,000…WOW!

Lynnemarie, Maryemily, CJ & Kyle B from San Juan Capistrano, CA sent Alex a card with amazing decorations all over the outside! Alex made me open it veeerrrry carefully so he could save the envelope!

Shelby from Bardstown, Kentucky sent Alex a card. Alex learned that they are the bourbon capital of the world!

Alex received a card from Michele I in Louisville, Kentucky with wolves on it! Alex learned they are home of the Louisville slugger baseball bat!

Molly D from Jamaica Plain, MA sent Alex a cool card!

Russ & Tammy, Tyler, Cody & Cassie W from Franklinton, LA sent Alex a BATMAN card! Alex was surprised to find a Saints can cooler and an LSU can cooler with a TIGER on it! Alex learned that they just moved there from Barre! Cody, offered to be Alex’s pen pal  There were also some really neat pictures in the card!

Jen A from Warwick, RI sent Alex a card. Alex learned that the RI colony was the 1st to initiate military action against England by setting her ship, the Gaspee on fire in Narragansett Bay! Alex said WOW!

On Saturday, November 22, Alex received the following:

From Teresa McAlister of TM Photography in Irasburg, VT, Alex received a precious tile with Alex’s picture on it! She said “Thanks for the SMILE, it’s contagious and made me smile!”



Karina sent Alex a card from Corona del Mar, CA! Alex loved the picture of the beach :)

Alex received a card from Sherry & Don S from Barre, VT! They are our good friend Gretchen’s mom & Dad! The card is an alligator and opens its mouth to a full set of teeth! Alex was SUPER surprised to find $13 inside!

Claudia P sent Alex a card from the NETHERLANDS! She included some fun facts about Holland such as that the “Netherlands” and “Holland” are used to describe the same country, people in Holland eat raw herring with onions on top YUCK (says Alex) and there are twice as many bikes as cars YAAAY!

Chris, Christina, Kylee & Kacie C from Weathersfield sent Alex a card! Alex was very surprised to find a Weathersfield shirt in the envelope! I went to high school with Christina and she did not even realize it until AFTER she decided to send a card and t-shirt!

Alex got an adorable 3D animal card from Laura, Jeff, Alle & Ande in Barre, VT! Alex thought it was super special! I went to high school with Laura!



Alex got a postcard from JJ in BORA BORA! We had fun trying to find it on the map!!

Alex got an adorable dog card from friends in West Virginia!!! Alex learned that West Virginia is the home of the peperoni roll!

Brent & Kathleen W from Livonia, Michigan sent Alex the most amazing 3D card! Brent drives a big orange truck for Allied so we will think of them every time we see one!



A third grade class at the Indian Valley Boys & Girls club in Souderton, PA all sent Alex birthday cards! They told Alex all about themselves and drew beautiful pictures. He loved them!

Gary & Melissa D from Kesseville, NY sent Alex a card! Alex learned that civil war photographer William Henry Jackson was born there and was in the Battle of Gettysburg!

Rande, Brandy, Stark, Kane & Meadow E sent Alex a card from Golden Valley, AZ. Alex learned that Golden Valley has no grocery store and no stop lights, just like US! Welllll, we do have a Dollar General now, does that count?

Alex received a card from Carissa C in East Hampton, CT. The card sings the CONGA and Alex was bopping to it! Alex learned that there is a huge lake in the center of their town called Lake Pocotopaug. Alex cracked up when I said that, he thought the name was really funny! It could have just been that I butchered the pronunciation, but it was a laugh!

Melinda D in East Hampton, CT sent Alex a card. She told Alex that their town is called the bellringers as bells are made there and sold around the country!

Kerrie L sent Alex a birthday card all the way from IRELAND! She said lots of love from Mullingas where it is always raining!”

Larry & Janet J sent Alex a card from Salyersville, KY!

Jamie & Peter J from Mooers, NY sent Alex an adorable bulldog card for his birthday! They said they are right by the Canadian border!

Malik (age 10), and Maryam (age 5) made Alex some beautiful cards that their mom, Latasha sent to Alex from Mississippi! The envelope was decorated too! They even sent a map showing where they are! The cards are beautiful and Alex was so happy to see ladybug stickers on them! Alex’s grammie, who is up in heaven, loved ladybugs and we always think of her when we see them! Alex liked his blue sparkly Alex and is going to hang it in his room!

Friday, November 21, 2014 9:31 PM CST

Alex has received 288 cards from 44 states! Alex has received cards from TWELVE countries (USA, Canada, England, France, Germany, Holland, Iceland, Ireland, Italy, Japan, Mexico, Spain) and possibly one other world (Alpha Centauri B) WOW! The original FB post has been shared 1,668 times! This has gone so far beyond my expectations, really it has. It has turned into so much more than a card shower… all the other kids at school, well they think this is totally COOL and tell Alex so. That makes him feel like a million bucks. You did that. Thanks! And WCAX….last I knew, they are scheduled to visit Alex tomorrow….I have not heard otherwise and will keep you posted!

If you happen to know anyone in Idaho, Nebraska, North Dakota, Utah, West Virginia, Wyoming (ONLY 6 LEFT), Alex would LOVE to get a card from these states as they are the only states he has not received a card from!


Alex LeFevre
16 Howe Street
Williamstown, VT 05679


And of course, we are still updating http://caringbridgeclassic.org/vt/alex/ so everyone can join in the fun!


On Tuesday November 18, Alex received the following:




From our friends Chris & Jenn Lamotte and family (you might know Chris by now as the chart and spreadsheet guru !), Alex received a magnificent tie-dyed BEN & JERRY’S shirt! Alex wanted to put it right on! Alex and Riley were quite surprised that Riley got a package too with a Ben & Jerry’s shirt in it just for her! Then, there were coupons for two free pints each and Batman stickers, Spiderman stickers and a Ben & Jerry’s bumper sticker! Alex was trying to figure out where that would fit on his wheelchair! Alex was amazed that Jenn cooks at the largest elementary school in the state where almost 1200 kids go (almost ½ the population of our whole town!) Alex thought it was pretty neat that Chris has worked for Ben & Jerry’s for twenty-six years, which is the same age as his big sister!











Alex received a card from the Jeff & Andrea T and family in Little Rock, Arkansas!

Maryann in Michigan sent Alex a card. Alex learned that Michigan is the ONLY state that touches four of the five Great Lakes and is is known as “The Great Lake State.” Of course we had to look on the map!

Anissa sent Alex a card from Gilbert, ARIZONA!! Alex was excited because it is a cool card with pictures of Arizona on it, and also because he got to cross another state off the list!

Doretta P sent Alex an adorable dog card from Riverside, California!

Alex received a super sparkly cat card from Rick W and the Prater family in Jenison, MI! Alex learned that Jenison was a big lumber town!

Tango and Lee Ann in Columbus, Mississippi sent Alex a funny hamster cart. Alex learned that Mississippi is the home of SEC Football!

On Wednesday, November 19, Alex received the following:

April W (Dean of Students @ WMHS) from Montpelier, VT sent Alex a card! He was pretty impressed that people at school knew all about his upcoming birthday and all of his cards :)

Alex received a super duper sparkly card (see yellow sparkler in the pictures!) from Kelsy O in Charlotte, NC. Alex could not stop shining it around! Kelsey is best friends with Alex’s BFF Allie Kittredge. Alex learned that Charlotte has a new roller coaster called the Fury 325 that is the tallest and ties for the FASTEST coaster in the world. That is IT, we are coming to visit :)





Olivia (age 2) and Amelia (age 5) sent Alex a birthday card from Barre, VT! Alex loves getting cards from little kids, he thinks it is really sweet!

Alex received a card from Carl W who is a teacher at our High School! Alex thought that was pretty cool, and was pretty impressed that Mr. W was one of his big sisters very favorite teachers!

Crystal M & family sent Alex a card from Tulsa, OK with Supersonic Car stickers inside! Alex learned that they have a place there called “The Center of the Universe.”

Alex received a card from Carol V (his friend Payton’s gramma) and Colleen W, (his friend Payton’s aunt) postmarked Burlington, VT!

Alex received a BOX from Jason and Snoopy in Milford, CT! Jason and I went to school together and just recently reconnected on FB. Inside was a pirate card ! Alex learned that Milford has a pirate parade every year! Alex wanted to know if we could go….so Jason, when is this?? Inside the box was the 375th Anniversary Memorial Booklet of Milford with all sorts of great facts, really cool sailboat and tugboat stickers, and a Pirate Parade t-shirt!! Alex wanted to put it right on, and we had to dig out his eye patch to complete the ensemble!







Kathleen in West Barnet, VT sent Alex a postcard with a painting of Cabot creamery on the front. She said to eat lots of Ben & Jerry’s and some Cabot cheese. We DO love their cheese and, well, pretty much anything they make!

Gretchen W from Springfield, VT sent Alex a really funny cat card! She said she is having fun reading all about the card he has gotten and the interesting facts in them!

Alex received a card from Tricia and Joel P in Randolph, VT! Tricia was Alex’s OT for many years! Alex thought the card she sent, which has a map of the US on it, was just perfect and he made me promise to take him to visit her on her farm!

Jessica C in Georgia, Vt sent Alex a birthday card with a really neat pinwheel on the front! Jessica and I went to school together and she told Alex that Georgia was named after King George III by New Hampshire which was in a land dispute over Vermont with New York. They both claimed to have rights to the land. Alex was surprised to learn that!

Alex received a postcard from Roberta Downey who is from Montpelier, VT, but is visiting Oregon. The postcard has a really pretty picture of the Oregon Coast on it!

Natasha, Justin, Machaela & Josie T sent Alex a ZOMBIE birthday card from Lynbrook, NY! Alex was surprised that it had Avengers stickers in it and a picture that Michaela drew! I went to law school with Natasha :) Alex learned that Lynbrook has had lots of different names and Lynbrook was finally chosen because it is Brooklyn backwards. Lynbrook has a section where all the streets are named after streets in London, UK which Alex thought was really neat as he has received several cards from the UK!

Amanda, Kaydence, Justina & Daniel B from Derry New Hampshire sent Alex an awesome Avenger card that opens up into a poster! Alex learned that the NH state insect is the Ladybug and the state flower is the purple Lilac. Alex loves Ladybugs!



Anne O from New London, CT sent Alex a card with a photo that she took of the New London Ledge Light. Alex was amazed to learn that it might be haunted!

Alex’s friend Karina sent him a card from Riverside, CA. Riverside is famous for its citrus and the first citrus trees there came from Bahia Brazil!

On Thursday November 20th, Alex received the following:

Alex received a card and a T-shirt from the Blake Family in Scarborough, ME! Alex loved the Buzz Light-year sticker on the card!

Pete W in Moreno Valley, CA sent Alex a card. He said that they are hoping for lots of rain this year as they need it. We are hoping they get some too!

Alex received a postcard from Rick & Val B in Plattsburgh, NY with a neat aerial view of Plattsburgh on it. They asked Alex if he had wanted snow for his birthday…. His answer was N.O. spells NO!

Judy L from Guntersville, AL sent Alex a card. Alex learned that her community is called Scant City because bootleggers used to sell alcohol in bottles called scants… smaller than a quart, but bigger than a pint. Interesting!

Alex received a fabulous talking card with light up stars from Meghan, Eva, Luke & Tom M in Barre, VT! He thought it was hilarious!

Karina sent Alex a card from Los Angeles, CA, the “City of Angels”!

Regina S sent Alex a wonderful singing card from Houston, TX! Alex was singing along!

Alex received a card with Winnipeg Jets stickers in it and really neat tattoos from Camille G in Winnipeg, MB CANADA! Alex learned that Winnie-The-Pooh was named after Winnipeg, her owner’s(Lieutenant Harry Colebourn’s) home town!

Laurel, David & Vincent S sent Alex a COW card from Las Vegas, NV! He thought that was funny! Alex was surprised to find a UNLV hat inside and two really cool postcards of Las Vegas! Alex learned that Nevada is the ONLY state where an Ichthyosaur skeleton was found! We had to look that one up!



Karina sent Alex a card from HOLLYWOOD, CA, the land of a billion lights!

Jason L in Arlington, MA sent Alex a sparkly card! Jason is Chris L’s brother. Alex was very surprised to find a Visa gift card inside! Alex liked the Red Sox return address label too :)

Alex received a card with a supercute puppy on it from Kathy& Dave F and their American Eskimo pups Cricket, Jack, Bitsy & Cocoa in Townsend, DE! Eskies are like jelly beans, you can’t have just one!

Martin C sent Alex a card from Vergennes, VT with blue boats on it!

I was very interested to see an envelope to Alex with the Vermont Treasurer on the return address!? Alex opened it and sure enough, he got a card from the WHOLE gang at the Vermont State Treasurers office hand signed by everyone, including Beth Pearce, the State Treasurer! Only in Vermont, RIGHT? Inside the card was a special surprise; two magnets that look like $100 bills and genuine shredded US Currency. It comes in a little packet with information (courtesy of the Federal Reserve Bank of Boston) and Alex learned that The Boston Federal Reserve Bank (one of 12 throughout the country) destroys about $10 MILLION worth of worn-out currency EVERY DAY! WOW! Alex is going to show that off at school on Monday!

Tuesday, November 18, 2014 2:57 PM CST

Alex has received 251 cards from 43 states! WOW! The original FB post has been shared 1,641 times! Alex treasures every single card he has received and continues to be amazed by the sheer love and good wishes pouring over him! If you happen to know anyone in Arkansas, Idaho, Nebraska, North Dakota, Utah, West Virginia, Wyoming, Alex would LOVE to get a card from these states as they are the only states he has not received a card from!

Alex LeFevre
16 Howe Street
Williamstown, VT 05679


And of course, we are still updating http://caringbridgeclassic.org/vt/alex/ so everyone can join in the fun!


You guys are amazing and have certainly made this a memorable and wonderful experience for Alex. THANK YOU!!! And a special thank you to Chris Lamotte for the FABULOUS spreadsheet and the charts!


On Saturday November 15, Alex received the following:

From Eugenie C in HOLLAND, Alex received a postcard with beautiful windmills and tulips on the front (and a cow too!)

From Catherine and Blaze S in Griswold, CT, Alex received Card. Catherine is originally from the UK and is visiting Blaze.

Alex received a card from Jenna P in Charlotte, NC. Alex was surprised to find $2 in his card! Jenna is best friends with our friend Jess Taplin and has heard all about Alex! Jenna works as a teacher and said that her school was closed for 3 days one time because it was COLD. Alex thought that was funny and was wishing it was like that here. HAHA. I suppose every 13 year old only wants to go to school 2 days a year :)

Gail and George T from Jefferson City, TN sent Alex a card!

Joan & Aimee’ sent Alex a card from Dublin, IRELAND. He loved the puppies on it. Joan has a daughter that is going to be 13 too!

Alex received a card from Barbara H in sunny Englewood, FL (we are totally jealous on this snowy day). Barbara went to Twinfield HS and now collects shells on the beach. Alex loves doing that too!

Piper, Kaeleigh, Erin & Matt G sent Alex a card from Acton Ontario, CANADA :) Alex loved being able to see a picture of Piper and Kaeleigh and learning that they are friends of Angel Kirkland!

Olga J in Worcester MA sent Alex a card! Alex learned that Harvey Ball, who created the smiley face, lived there AND it was the home of Bozo the Clown!

Alex received a card from Kristin J in Portland, OR and there were SHARKS on the envelope. Alex loves sharks! I used to work with

Kristin, back in the day :) Kristin sent Alex two Portland Oregon stag signs! Alex learned that Portland was named on a coin toss, if the coin had landed the other way, it would have been named Boston, OR! AND Portland has a dormant volcano within the city limits! That is pretty amazing!

Donna & Tom Phelan in South Chatham, MA sent Alex a cool nautical card!

Brian R from Moraine, OH sent Alex a funny card.

Penny M from Beebe Plain, VT sent Alex a card with glitter in it! He thought that was funny. Penny lives about 5 minutes from the Canadian Border.

Alex received a card from Evelyn B in Newport, VT with lots of balloons on it!

Edward & Sabra S in Orange Park, FL sent Alex a card. They lived in VT for 23 years and have lived in FL since January. One neat fact about Orange Park is that there are many military family’s there!

Alex received a funny dog and cat card driving a car from Stephanie S in Pekin, IL!


Lori, Dusty, Charlotte & Griffen H sent Alex a card from Canton, GA! Charlotte said she loves Mickey Mouse Clubhouse and Alex does too!

Jackie W from Nathalie, VA sent Alex a cute frog card. Alex was VERY surprised to find $20 inside with his happy birthday wishes!

The Allen’s in Charlottesville, VA sent Alex a neat card with lots of balloons on it!

Lorraine T from Newport, VT sent Alex a puppy card. Alex LOVES to watch puppies play and, interestingly enough, is obsessed with watching dog shows on TV :)

Alex received an unsigned postcard from San Francisco, CA with a beautiful picture of the Bay Bridge on the front!

Kelly & Eric L sent Alex a card from Cranston, RI! Alex learned that Rhode Island is the smallest state and that 425 Rhode Islands would fit into Alaska!

Michelle, Anthony, Brittney & Anthony Jr. A from Johnston, RI sent Alex a super sparkly Birthday cake card!

Alex received a postcard from Bettye in NH. There is a neat picture on the front of fun things to do and see in New Hampshire!

Andi K from Buxton, ME sent Alex a card. Buxton is 150 miles from us. Andi lives near an alpaca farm and alpacas are pretty cute!

Ben, Lauren, Lola & Allen B sent Alex a card from Columbia, SC! They learned about Alex from Julia M :) AND Alex has the same birthday as their Grammy. It is a pretty special day!

Terry S sent Alex a funny monkey card from Cedar Hill, MO! They live in the country and sent Alex a picture of a deer in their backyard. They said they see turkey, raccoons, opossums, snakes, turtles, foxes and other animals too!

Alex received an unsigned postcard from Old Sacramento, CA. It has a picture of the old horse and buggies on the front!

The Maseda’s from Colorado Springs, CO sent Alex a Pictorial Souvenir guide of CO. WOW, Colorado sure is beautiful! There are maps inside too!

Kevin G in Roswell New Mexico sent Alex a card! Inside was a COOL aviator map, two postcards from New Mexico and a postcard with little aliens on it that says that Roswell, NM is the home of the UFO. We had fun telling Alex all about the “balloon” that crash landed there!

Kellee Ratzer and her little friends from Four Seasons Childcare in Colchester, CT sent Alex cards that the kids made. Alex LOVED them :)

Stephanie S from Washington, DC sent Alex a box with all kinds of goodies in it! I graduated from Law School with Steph! She sent Alex the hat that she wore when she volunteered to work at the Democratic National Convention in Charlotte, NC, a coaster from the Presidential Inaugural Ball for President Obama’s 2nd inauguration and the guidebook from the Inauguration which has all sorts of information about the events, the history and a MAP of the city that folds out. Alex can’t believe that these things were in the same room as our President! I swear, he won’t put the guidebook down :)

On 11/17/2014 Alex received the following cards:

Arnold C sent Alex a card from Washoe Valley, NV! Arnold sent a picture of a coyote in the dessert that he took and Alex thinks it is fabulous! Arnold is friends with our friend Chris Lamotte!

Lynn W (who has been praying for Alex since he was a wee sprite) sent Alex a card from Seattle, WA! The card sings Happy Birthday with MEOW’S and Alex cracked up!

Darci S., who used to be Alex’s teacher, sent Alex a card from Cornwall, PE CANADA! She sent him a beautiful picture of her family!

Alex received a card from Ms. Tabitha and the youth Sunday School Class at the VanWert Baptist Church in Rockmart, GA! Alex thought it was REALLY neat that they looked at a map and found HIM 

Ron R sent Alex a card from Graham, NC. Alex learned the Graham is the County seat of Alamac County and was settled in part by Quakers.

Our friends Tabitha H and Lois G sent Alex a card from Aragon, GA. They like to go walking on their wheelchair accessible trail in Polk Co. They have met some great people with cool adaptive bikes and even a Paralympic athlete! Alex has an adaptive bike that he loves!

Sarah H sent Alex a card from SPAIN! Sarah is friends with Alex’s friends Jessica and Gretchen! Alex learned that the guitar was invented in Spain! Pretty cool!

Alex received a card and calendar from Shawn B in Springfield, VT. The calendar is full of beautiful shots in Vermont that Shawn took. Alex’s card had candles that light up while the card is singing! I went to high school with Shawn :)

John S from Tulsa OK sent Alex a card with an Oklahoma Biker patch in it! John Bikes on historic Route 66! Alex knows about Route 66 from the Disney movie Cars 

Alex received a card from Barbera X in the UNITED KINGDOM!

Kerry, Aaron, Samuel & Adam sent Alex a birthday card from Riverside, CA. Alex learned that Riverside is famous for their oranges and it was recently 90 degrees there!

Alex received a Knight card from Sharyn S in Riverside, CA with a little alien in it! That made Alex smile!

Christine H sent Alex a card from East Hampton, CT with great stickers on it. East Hampton has the Comstock Bridge, built in 1873 and which is the only remaining covered bridge in Eastern Connecticut! They are nicknamed Belltown, U.S.A. because they make bells for sleighs, farm animals & more!

Barb, David, Sam & Jayme W sent Alex a card from Lyndonville, VT. I went to high school with Barb! Lyndonville is part of the Northeast Kingdom which got its name in 1949 when VT Senator George Aiken remarked on its unsurpassed beauty.

Alex received a San Clemente postcard from our friend Karina in CA. Alex could not believe how long the pier was!

Alex received an unsigned card from North Reading, MA which said that he has a beautiful smile! Of course, that made him smile!


P. Blaine in Mililani, Hawaii sent Alex two Calendars that have breathtaking pictures of Hawaii in them. Alex thinks we should go there right away  Alex especially liked the pictures of whales and lava!

Alex received a cute teddy bear card from Linda G in Naples, FL!

Anna M sent Alex a card from the UNITED KINGDOM! Inside was a cool postcard from Hertfordshire with the St. Albans Cathedral. We have a St. Albans in VT too! Anna gave Alex a calendar with lots of wonderful pictures of LONDON on it!

Jessica I sent Alex a card from Bellows Falls, VT! Alex learned that the “Falls” were once a fishing place for the Abenaki tribes. They carved two sets of faces in the rocks just below the falls!

Alex received a card from Nathan W, Stacy S and their family from Springfield, VT! Alex loved the cupcake on the front  I went to high school with Nate!

Monnica & Ammar A sent Alex a card and letter from Pensacola Florida! Ammar is originally from Amman, Jordan which, Alex discovered, is VERY far away. They even ride camels there! Monnica & Ammar sent Alex two coins from Jordan, and he thought that was the coolest thing! Good luck to both of them as they are expecting a baby girl in December!


Alex received a birthday card from Iris M in Toronto, Ontario CANADA! Iris is 7 and drew Alex a very sweet picture of herself, Alex and a cute little squirrel. Alex loved it!

Brooke W in Atlanta, GA sent Alex a card. Alex learned that this year there are many events there this year marking the 150th anniversary of the Civil War battle at Kennesau Mountain. Brooke spent much of her childhood in Halifax, VT!

The Gardner’s from Westlake, LA sent Alex a cool postcard with a crocodile on it as well as other LA pictures! Alex was surprised that they also sent him a Cajun Survival kit with a LA patch on it, a miniature crawfish, Cajun spices, Spanish moss and lots of other goodies! Very neat!

Monday, November 17, 2014 6:43 AM CST

Alex UPDATE!! SO exciting! Alex is having an absolute blast charting all his cards and this weekend he showed some of his friends all of his mapping! Alex has received 197 cards!! He is so appreciative of every single card he gets and loves hearing the letters, stories and well wishes that come with them! Alex has received cards from all states except Arkansas, Idaho, Nebraska, Nevada, North Dakota, Utah, West Virginia, Wyoming. Thank you all!

It is not too late. Alex’s birthday is November 27 :)

The original facebook post has been shared 1606 times!



On 11/13/2014 Alex received the following cards:
From the Green Family in Rancho Cucamonga, CA Alex received a very sparkly card with singing cupcakes! He laughed. He thought the name Rancho Cucamonga was pretty funny too!



Alex received a card from Arlington, VA from Molly who hopes his birthday is FULL of fun and granted wishes!

Deb & Terry N (Patty Learned’s mom & Dad) in Southport, NC sent Alex a card. Alex learned that they even have a Howe street in Southport!

Tim & Cindy C in Forest, VA sent Alex a card where you actually BLOW out the candle and it sings Happy Birthday to you! SO cute! They are in the American Eskimo Dog group with me on facebook (LOVE my Eskies!) Alex learned that Forest, VA is where Thomas Jefferson’s second home, Poplar Forest is located. The National D-Day Memorial is 15 minutes away.

Alex received a package from Penny K in Thornhill, Ontario CANADA! Penny is friends with Kelly, who you may remember sent Alex the AWESOME Hockey Canada Jersey and Canadian Flag. Kelly and Penny met because of Kelly’s son Kirkland who had Mitochondrial Disease. Penny worked at SickKids Foundation and Kelly fundraises for Mitochondrial Disease research. And here is where how small our world is kinda smacked me upside the head, Penny is originally from South Barre, VT…. About 3 minutes from us! WOW! Penny now works for RUGBY CANADA where they compete in Canada and all over the world! Penny sent Alex an official Rugby Canada Jersey AND a rugby ball signed by all of the players!!!! Let me tell ya, I can’t get Alex out of the two jerseys he has been given! He was so excited to receive the rugby ball and picture of the players….because now he looks just like them!!! WOW!







Keith, Kristie, Cristina and Camille G from Hendersonvill, NC sent Alex a card with a birthday cake drawing on the inside!

Susie & Jake in San Diego, CA sent Alex a postcard with a cute panda on the front!

Our friend Karina sent Alex a postcard from Lake Arrowheed, CA with pretty pictures of local lakes on it!
Margaret F sent Alex a Postcard with facts about Alaska on it. Did you know that the official fish of Alaska is the King Salmon and the official sport is Dog Mushing. Pretty neat!

Dawn T in Wildomar, CA sent Alex a card with a beautiful picture of Luana Beach in it. She said “$13 for 13 years” and Alex was REALLY surprised that the card had $13 in it!

On 11/14/2014 Alex received the following cards:

Carol & Rich K in North Springfield, VT sent Alex a postcard with a beautiful picture of Springfield on it. I grew up in Springfield!

Alex received a card from Hilary, Thomas, Patrich, Lulu, Moby, George & Flynn S(plus chickens, geese and ducks, from Saint Pierre Du Mont, FRANCE! Alex loved the pictures of funny dogs!

Sharron sent Alex a card from Randolph, VT with a rainbow and a flying horse on it!

Alex received a card from Julia C in East Sussex ENGLAND! Alex loves looking at the neat stamps on the cards, especially when they are from another country! The card had pictures of the beach, local castles and MAPS in it :)
Julia told Alex that she got his address from her cousin Jan Q in Northfield who passes Alex and I in her car as we are walking to school! Really neat!

Jennifer F from Martins Ferry, OH sent Alex a very funny sparkly card with a MAP of Ohio in it!

Keaton P sent Alex a card from ENGLAND!! Keaton is 16 years old and just joined the British army as a junior soldier serving with the House Hold Calvary, Blues & Royals Regiment. He will be ab Buckingham Palace on horseback protecting the queen!

Carol L from Hartland, VT sent Alex a card with cute puppies on it!

Alex received a card from Maxine in Enosburg Falls, VT!

Chryl & Gary P sent Alex a card from Clearwater Florida with a postcard of Dolphins from the Clearwater Dolphin Trail on it!

Chris & Stephanie AS from Pensacola, FL sent Alex a card! Inside was a letter with lots of great facts about Florida and a picture of Chris and Stephanie. Alex learned that Pensacola has flown 5 different flags in its history; Spanish, English, French, the Confederate and the US Flag!

Alex received a card from Peg S in Plattsburgh, NY! Peg gave Alex a Battle of Plattsburgh sticker, a postcard showing an American militiaman firing artillery, and a treasure to get started caching with openchaching.com! That is going to be a great hobby and I am sure we will find some handicapped accessible ones!

The Mannino family in Moody, ME sent Alex a card. Alex learned that Moody is not a “real” town even though it has it’s own post office!

Alex received a package from the S.K.R.E.A.M. kids in South River, NJ. These are kids from K-5 who are in an after school club. They all made Alex cards (SIXTEEN)! Alex thought they were AMAZING!!

Sunday, November 16, 2014 8:57 AM CST

Alex update :) His guesses are getting a little bigger….and good thing too, because today he got TWENTY-THREE cards on the 14th!! Oh my!! Alex’s post has 1468 shares and Alex has received 174 cards from 38 states and 10 countries and possibly one other world :) Alex is hoping to get cards from AZ, AR, ID, MO, NE, NV, NM, ND, RI, UT, WV, WY.



Today, Alex received the following cards:


Meryl S sent Alex a card from Lititz, PA and a box of yummy chocolate! Meryl is the grandmother of Alex’s bud Gretchen Singer, so we knew it was safe, and boy was it yummy! Good thing Alex is a good sharer!



Nick S sent Alex a card from Berlin, CT. Nick told us that a fun fact is that he is the best 11 year old artist in the town! Judging from his fantastic card, we would bet that is right!

Connor T sent Alex a card from Berlin, CT. Connor told Alex that they have the Berlin fair there and people from all over the state come!

Kelsey sent Alex a card from Berlin, CT wishing Alex the best birthday EVER!

Alex received a card from Kiki Boyens in Springfield, VT! I graduated from high school with Kiki. Alex loved the killer whale card!

Mike & Peggy K in Springfield, VT sent Alex a card wishing Alex a very happy birthday!

Alex received a card from Kiko B in Springfield, VT. She said that she is 7 and Alex was really impressed that she could write so well!



Alex received a card from Nancy F and all the children at Barre Congregational Church in Barre, VT! Alex’s card is signed by Meredith, Ned, Noah, Katherine, Ivey, Abigail, Brandy and Camran and has a wooden pendent inside that says I matter, you matter. Alex agrees!

Margaret B sent Alex a card from ANCHORAGE ALASKA! He was SO excited that we had to take a picture of him pointing it out. It is SOOOO far away  Alex learned that the US bought Alaska in 1867 for 7.2 million dollars but it did not become a state until 1959. 7.2 million, a bargain price!



Allison & Morgan in Eugene, OR sent Alex a wonderful card with LOTS of facts in it about Eugene AND about Alex’s birthday. The town is full of pick-your-own fruits, and they are big UO football fans! Alex learned that he shares a birthday with Bruce Lee, Bill Nye, the science guy and their brother! Thanksgiving lands on Alex’s birthday about every 9 years depending on leap year. Pretty cool things to know!!

Tricia M sent Alex a card from Milwaukee, WI with a hilarious monkey on the front. Alex thought it was very funny!

Victoria G & Family from Mesa, AZ sent Alex a card with beautiful Grand Canyon on the front. Ah, someday we would love to visit!

Alex received a card from Beverlee D and her dog Isabelle in Dalton, MA. Alex learned that Dalton is known as a paper town and the paper that the dollar she gave Alex is made there and printed in Washington, DC. That is really neat and Alex was really surprised to get the dollar and a hand engraved card from Crane & Company!

Ronni Dembers from Gorham, NH sent Alex a COOL Spider Man card with a Spider Man wrist band in it AND a dollar. Alex wanted it on right away!

Nicole M from Pigeon, MI sent Alex a postcard with a picture of the Pigeon Historical Museum on it. Alex learned that Michigan is shaped like a mitten and Pigeon is in the thumb! Pigeon is famous for their yearly event called “cheeseburger.” :)

Alex received a card from Gail T in Forest City, NC with a cute puppy on it! Alex learned that they do get foliage colors there in the fall and the city has lots of music, locally grown food and micro breweries, a lot like Vermont where she is originally from. Her town is noted for their Christmas lights.

Sierra W and Joshua T in Lewes, DE sent Alex a really artistic card and surprised him with $5 in it! Alex learned that Delaware was the FIRST state in the United states and that Lewes is the first town in the first state. That is pretty neat!

LaDonna & Dean S from Prairieville, LA sent Alex a card that was very sparkly! Alex learned that they are just south of Baton Rouge which is the capital. Baton Rouge in French means Red Stick. LA State University has the fighting tigers! Alex loves tigers :)
Tracie H from Lake Worth, FL sent Alex a fun musical card :) Alex loved it!

Rachel C in Millsboro, DE sent Alex a super fun Cat in the Hat card!

Nathan S in Millsboro, DE sent Alex an IRONMAN card with a musical wristband! Alex thought it was awesome!

Karina in San Juan Capistrano sent Alex a card. The mission there is the oldest building in use in California!

Alex is enjoying each and every card! He just loves mapping them out and seeing how many people care about him all over the world. Thank you!!!

Monday, November 10, 2014 6:47 PM CST

Wow, look at that overflowing mailbox!!!! We are at 1468 shares and Alex has received 151 cards from 36 states and 10 countries and possibly one other world :) Today, he guessed that he was going to receive FIVE cards and he received THIRTY-FIVE! Holy Smoke!!! Alex has not yet received cards from AK, AZ, AR, ID, LA, MO, NE, NV, NM, ND, RI, UT, WV, WY. Alex is all set with an appointment to meet with the folks at WCAX!! It is still a little way off, I think they are thinking it will make the perfect Thanksgiving week story and they are right!









Today, Alex received the following cards:

Logan F sent Alex a Mickey Mouse card from Burlington, VT! Logan told Alex that Mickey Mouse was born on November 18, so they share the same birthday month :D She said to say hi the next time Alex sees Mickey!

Joan P sent Alex a card from Williamstown, VT with goats jumping all over it. Joan is our neighbor and told Alex that where she used to live in Willis, Texas they BBQ goats and it is really good. Alex said that he would try it!!! We could not believe it, we were laughing so hard!

Alex received a card from Sandy K in Chapula, Jalisco MEXICO!! That is waaaaaaay down there! One of the pictures shows Alex pointing to it and he was impressed with how far away it was! Sandy’s home is at Lake Chapala, the biggest lake in Mexico and it is warm there all year long. Sounds really nice about now :)







Barbara C sent Alex a card from Kenosha, WI. Alex learned that this is the last county before Illinois and Lake Michigan is in her back yard!

Cathy T in Broad Brook, CT sent Alex a cute card with sparkly birthday hats on it. She said she loves his smile <3

Alex received a card from Jim and Noreen D in Big Bear Lake, CA! Alex learned that there is lots of skiing and boating and they get lots of snow there, just like us!

Melisa, Freckles, Cayman & Clover sent Alex a card from Sugar Mountain, NC with a great picture of some of the local landmarks on it!

Dorothy M. in Hudson, NH sent Alex a card with a mama and baby wolf on it! Alex LOVES wolves. The card is signed Ayasha and there is even a dollar in it! Alex was so surprised.

Karina K sent Alex the following cards: From Laguna Niguel, a card with lots of great stickers on it! From Huntington Beach a card with a surfer statue on it. Huntington is known for its surfing culture! From Dana Point a card with a WHALE on the front. Alex learned that Dana Point has a famous festival of whales. Alex got another card from Dana Point where Karina said her husband worked there for five years :) There is SO much to do in that area, Alex wants to visit!

Pauline and Jim M from Riverside, CA sent Alex a card. Alex learned that at Christmas the Historic Mission Inn there puts over four MILLION lights on the Inn. WOW.
Rebecca E from Hawthorne, CA sent Alex a card with a really cool map in it!

Alex received a card from Mart F in Dronten HOLLAND! We looked it up and saw that they have lots and lots of beautiful tulips there!

V.A. W in Vestavia Hills, AL (right near Birmingham) sent Alex a card with Puffins on it. Very cute. Alex learned that Birmingham is called the Heard of Dixie and is in the center of AL so his card comes from the heart of the heart of Dixie! :)

Alex received a card from the Stott Family in Pittsburg, PA with a smiley face drawing on the inside and an adorable puppy on the outside!

Jan R from Bettendorf, IA sent Alex a card. She filled it full of smiley stickers and said “Because seeing your smile made me smile…” <3

Nancy J in Portland, OR sent Alex a Happy silly card with smiley faces in it :)

Cory and Maureen K sent Alex a card from Pala, CA. Alex learned that Pala is an Indian Reservation which is in the areo where the Empress of China loved to get her Tourmaline. They go into the riverbed by their house and collect the ones washed down from the Queen Mine! They sent Alex a piece of pink Tourmaline and a piece of black. He thought that was really cool!

Ms. Couger’s class in Lawton, OK sent Alex a sparkly card signed by everyone  Cale said that he wishes Alex were at his school with his cool chair! Alex thought that was sweet!

Debra H from Orange, CA sent Alex a cute moving caterpillar card! Alex and Debra share the same birthday!

Alex received a card from Bob & Brenda M in Chandler, TX. The largest lake in the area is called Lake Palestine and there is fishing, camping, boating and bass tournaments. The biggest bass caught there was 13 POUNDS!

The Walters family in Duncan, Oklahoma sent Alex a very funny dog card. He made me open it about 10 times!
Maxine G from the town of Pittsford, NY sent Alex a card!
Dana E sent Alex a card from ICELAND. Alex was VERY excited  Dana and I were friends when we were little girls.

James S sent Alex a card from Lakewood, WA. James has some of the coolest drawings we have ever seen!

Beverly M from Indian Orchard, MA (my friend Patty L. grandmother) sent Alex a really funny card that talks 
Dorothy M from Hudson, NH sent Alex a card and surprised him with a dollar in it!

Louis F from Turtle Creek, PA sent Alex a card. He said that he likes Alex’s chair!

Jackie C sent Alex a card from Browns Valley, CA with fun star wars activities in it! They live in the foothills of Northern CA surrounded by oak trees. Sounds pretty nice!

Maggie, Jack & Mike P sent Alex a postcard from Walt Disney World in Florida! Alex was excited. Not too long and Alex will get to go back too!

Roberta S in Fountain, CO sent Alex a sweet card 
Melissa M in Kosciusko, MS sent Alex a card. Alex learned that they say ya’ll A LOT. This town is the birthplace of Oprah Winfrey. Mississippi is known for cotton, soybeans and farm raised catfish!

Pam B in Myrtle Beach, SC sent Alex a really funny card and a Myrtle Beach T-shirt! Alex wanted to put it right on! Both Pam and her brother were also born on November 27th. She just lost her brother, but it made her happy to think she could bring some sunshine to Alex, and she did! Happy Birthday to Pam and her brother up in heaven <3

Sunday, November 9, 2014 8:50 AM CST

The original Facebook Post has now been shared 1438 times!!! This has resulted in Alex receiving 116 cards from 29 states and SEVEN countries (USA, Canada, Ireland, Italy, Japan England and Germany!) and POSSIBLY one from another world (see last entry!) Amazing, astounding….and most of all, FUN!!!! Still playing phone tag with WCAX, I will keep you posted!

On Thursday, Alex received the following cards:



From Kirsten S at Ben & Jerry’s in London England, Alex received a card with a cool Happy Birthday bus on it! The card says “Happy Birthday from London!

From Mari O in JAPAN, Alex received a fabulous card and a great WORLD MAP that is much better than the one he had. We found a new place for it right away!





From The Mahoney’s in Barre, VT Alex received a super sparkly birthday card!

From Debbie in Buffalo, NY Alex received a beautiful butterfly card.

From Sharon D in Riverside, CA, Alex receive a cool alien card! Alex cannot believe how people know about him from so far away!

From Paul & Pattie in Holbrook, MA, Alex received a wicked funny card. Let me tell ya, he was giggling!

Alex received a postcard from Karina in Laguna Niguel, CA! Alex LOVED the picture of the beach. Someday we would like to visit there!

Alex received a card from Nancy H in Beloit, WI. The card had Shar Pei puppies on the front. SO CUTE!

From Scott, Deanna, Tyler, Cole & Roark in N. Royalton, OH Alex received a card welcoming him to the teenage world :D
Alex received a card from Didi, Suzy, Brandon, Devon, Cary, Chelsea and their pets Camo, Shelby and Penny as well as Lucky and Tigg from ClearLake, TX which is right near Houston. Alex was very excited to get a card from Texas, especially such a sparkly one! Alex learned that Houston is the home of the NASA Space Center. We also learned that our neighbors, Mikhael and Sylvia are godparents to the children in this family!

From Judy B in South Windham, CT, Alex received a great card with a dog on the front. Alex learned that during the revolutionary war, folks heard what they thought was a battle one evening, but later discovered it was really FROGS battling in a pond! WOW.

Friday, Alex received the following cards:



Alex received a Happy, Happy, Happy birthday card from Erin, Mark & Chance in Vergennes, VT!

Chelsea P in Fredericksburg, VA sent Alex a card! Chelsea used to work with Alex and it was GREAT to hear from her! Alex learned that Fredericksburg is famous for FIVE civil war battles and is the home of George Washington when he was a boy!



Alex received a card from Ashley and David J in Greensburg, PA. Alex learned that Greensburg was named after Nathanael Greene who was a major general in the American Revolutionary War. Also, Pennsylvania was the 2nd state in the USA! The state flower is called the Mountain Laurel and Ashley & David have one in their yard!

Erin U in Garnett, KS sent Alex a card! He was excited to get a card from Kansas where Dorothy is from on the Wizard of Oz, one of his favorite movies!

Alex received a card from Susan J and Larry K, Lara K, Sophie K and Brad K in Berkeley, CA with a picture of the Golden Gate Bridge! Alex thought the bridge was HUGE!

Julia, Heather & Jude M sent Alex a card from Ellington, CT. I went to law school with Julia, so she has known Alex since he was a little guy :) Alex learned lots of facts about Ellington. He cracked up when he found out that there are lots of farms there with cows and that the manure smell is so bad that sometimes folks call it Smellington!!! We have that very same smell up here sometimes!

Alex received a card from LaRita D in Pensacola, FL with Captain America on it! Alex loved it!

Lucille K from Greenwich, CT sent Alex a card with a balloon on it. She is Julia’s (see above) aunt and offered to be Alex’s pen pal, how sweet!

Robert and MaryLeone B from Whitehall, MI sent Alex a very sweet birthday card!

Alex received a card from Susan T in Menifee, CA! Alex LOVED the fish all over the envelope and when he opened the card there was a really neat 3D diving scene. Alex loved it!

Chris & Tim C in Groton, CT sent Alex a very neat card shaped like an umpires shirt with all the different sport balls as buttons! Alex learned that their favorite things to do in Groton are see the ships at Mystic Seaport or the penguins at the Mystic Aquarium. Alex loves ships and penguins too!

Alex received a card from Kaua’i Hawaii. We don’t know who sent it, but thank you! This is called the Garden Island and they filmed the movie Jurassic Park here! This is ANOTHER one of Alex’s all-time favorite movies!

Mikhael & Sylvia Y our neighbors, sent Alex a HILARIOUS fart joke card! 9 pages of a funny rhyme and Alex was laughing up a storm. I don’t’ think there is a 13 year old boy in the world who does not appreciate a good fart joke! We learned that they have lived in Texas, California, New Mexico and South Dakota. Mikael actually lived in a Teepee for 7 months!

Alex received a package from the Mosaic Learning Center in South Burlington, VT that had FOUR cards in it. One card is signed by all the staff which Alex thought was very neat, and then he received handmade cards from Kyle, Alysha, and Carlton! Alex loved all the great stickers and drawings! The kids at Mosaic invited Alex to their school to play. What a sweet invitation :)

On Saturday, Alex received the following cards:



From Jameo, Lucy and Matthew J in Dublin, IRELAND, Alex receive a card. Alex learned that this was first a Viking settlement which Alex thinks is pretty cool (he LOVES the Vikings in How to Train Your Dragon!) and that they speak English but the language is Irish. They have Phoenix Park in Dublin which is 1,750 acres!





Alex received a card from Kanako O In ITALY! Wow, that was a fun one to map! It looks just like a big boot! Alex loved all the pictures of Italy on the front of the card!

From Michele S in Perkinsville, VT Alex received a card with a pig on the front that made him laugh! I went to high school with Michele and she told Alex that in 1947 there was a B-29 bomber that crashed on Hawks Mountain in Perkinsville! WOW!

Alex received a card from Mike P & Denise L in Williamstown, VT! Pretty cool to see how nice people are from all over the world, and right here at home too!

The Arents in Corona, CA sent Alex an adorable card with a dog on the front :)

Connie & Jim W in Ticonderoga, NY sent Alex a card. Alex learned that this is right near Lake George and Lake Champlain. We LOVE Lake George and go there almost every year. Ticonderoga means between two lakes! We did not know that!

Alex received a card from Bob & Lynne D in Amarillo, TX with a whole letter filled with facts about the area! Alex thought it was amazing that helicopters are made there and that they have tornados!

Migue V sent Alex a card from Bloomington, IN! We learned that Indiana was once covered by a warm sea which made layers of limestone which have been used to make the Empire State Building, Pentagon, Lincoln Memorial and others. Italian immigrants carved the stone into beautiful shapes and designs and some of the limestone has FOSSILS, one of Alex’s favorite things!

Alex received a card from Karina in Newport Beach CA! Alex learned that Newport has the longest operating and only auto ferry in Southern California! Alex loved the picture on the postcard!

Courtney M in Milton, DE sent Alex a birthday card with a great fact sheet in it! The population is very similar to Williamstown and they build ships there!

Amy B & Tiffany G in Cohoes, NY sent Alex a birthday card!
Alex received a card from Valerie B in Erie Pennsylvania!

Charley in Hollywood, FL sent Alex a letter! Charley recognized Alex’s Permobil standing wheelchair right off as he works with kids in wheelchairs in Southern Florida. We were NOT surprised to learn that Florida does not pay for standing wheelchairs for kids that need them. We have private insurance and they denied this at first too. We did not give up, appealed the decision (which took over 100 hours of research and writing and had many, MANY pages of studies to back up the necessity for it, and WON. We now provide this appeal (redacted) and all supporting documentation to anyone who has been denied. It won’t help if it is an item that is outright excluded in a policy, but has helped some people. We could go on and on about how this chair has improved Alex’s life and potentially prevented additional physical problems :) Thanks for your letter Charley!

Alex received a card from Anna M in Bessemer, AL! Ana’s birthday was on Thanksgiving LAST year and since Alex’s is on Thanksgiving THIS year, she told him that everyone will be celebrating with him in the parade. Alex learned that Birmingham is home to the nation’s OLDEST baseball park, Rickwood Field, which opened in 1910!

Tommie & Tyra D and Grandma Nash sent Alex a card from Corona, CA! Alex learned that Corona is the Circle City because in the early 1900’s there was a race track right in the middle of town!

Alex received a package from Patty L in Los Angeles, CA! I went to law school with Patty! Inside the package was a Mickey Mouse card (Alex LOVES Mickey Mouse!) and a whole BOOK with little known facts about California! FUN!!

And speaking of fun, Alex received a card from Ka that might just be from another world! ;) It has a picture of Earth on the front and inside says that it is from a galaxy far, far away. We went to the website that was provided and learned that Alpha Centauri B is a planet 4.3 light years away and it is considered to be superhabitable, meaning it might have living things on it! Wouldn’t’ that be AMAZING if there was? Alex thinks so. To learn more about this world, visit www.gizmag.com/alpha-centauri-b-superhabitable-worlds/30571/

The states Alex has not received any cards from are AK, AZ, AR, CO, ID, IA, LA, MS, MO, NE, NV, NM, ND, OK, OR, RI, SC,UT, WV and WY! Spread the word! Thanks!!!!

Wednesday, November 5, 2014 7:34 PM CST

Time for an Alex update!!! As always, I will also be updating on http://caringbridgeclassic.org/vt/alex/ so everyone can join in the fun. When I sent the first Facebook message out asking for cards for Alex’s 13th birthday, I KNEW that my close friends would be sure to send him some. I thought he would get a dozen or so cards, and have fun getting mail, feeling loved, and charting maps. Little did I know that the love would come POURING in and brighten all of our days with the wonderful people touching Alex’s life and sharing theirs with him. The original post has been shared 1279 times! Alex has received 72 cards from 24 states and FIVE countries (USA, Germany, Ireland, Canada and Japan)! And it all started with YOU my friends.

Oh and it gets more amazing, this outreach to brighten the life of one little boy… I was contacted just moments ago by WCAX who said they would LOVE to do a story about this. Speechless!!

I was discussing how truly good people are with a friend recently. I thanked her for sending Alex a card and she said something that has stuck with me. “You're welcome” she said “but I owe the thanks to you for offering such a generous way to let people be awesome!” I am so very glad that all of you are enjoying the trip with Alex <3
Now, on to the cards!

Yesterday, Alex received a PIRATE card from Deb L in Barre, VT! Deb was my boss for YEARS while I was going through undergrad AND law school. The best boss ever, by the way! She told Alex that Barre is the Granite center of the WORLD!

Alex received a card postmarked in Burlington, VT with big letters on the flap that say, DO NOT OPEN ‘TIL NOV 27th :)

Today, Alex received a card from Michelle T and family in Rutland, VT. I graduated from high school with Michelle! When we were mapping it, we saw that Rutland is almost the same distance from us as Alex’s sister in St. Albans.



Alex received a card from Maddy G and family in Shirley, NY which is on Long Island. Alex thought it was really neat that they have a drawbridge at their local beach! We are going to look that up and see if there are pictures online. Their community was home to many of the men who signed the Declaration of Independence. Maddy and family surprised Alex with a gift card to Target!



Alex received a card from Meg D in Granford, NJ. Her town is called the “Venice” of Union County since they have a beautiful river running through it!



Alex received a card from Caroline B in Colchester, CT. She is a good friend of Jack Edwards! We love Jack, and he loves to catch a ride in Alex’s wheelchair from time to time :)

Alex received a card from Rob I in Wechawken, NJ. First of all, we all think that is an AMAZING name for a town. Second of all, the card had ALL of Alex’s favorite stuff in it! Even a great picture of Rob as BATMAN, one of Alex’s favorite characters, and Buzz Light Year and Robin too! There was even a cool map showing places that he has lived! Rob is friends with our buddy Chris Lamotte who made Alex’s user friendly spreadsheet!

Alex received a card from Ramona C in Montpelier, VT. She works at the DMV and gets to see our statehouse almost every day! She sent Alex a picture of the State House. It is very beautiful!

Alex received a package from our good friend Kelly K in Georgetown, Ontario CANADA!!!! He LOVED charting that one. Kelly and I, well, we are sisters in the heart. Her baby boy Kirkland would have also been 13 this year. And oh boy, I bet he had a hand in all this from above! Alex was diagnosed as an infant with Mitochondrial Disease, a diagnosis that experts cannot agree upon to this day. Kirkland also was diagnosed with the disease and became Alex’s guardian Angel in 2007. We were fortunate to be able to share in their journey. You can read more about the amazing Kirkie at http://www.mitomarch.ca/MeetKirklandKilbride0408.pdf Kirk and Kelly have taught us more than they could ever know.

Alex was SO excited to open his package! Kelly sent him Canada tattoos, stickers, a wonderful shirt that Alex wanted to put on right away, and a Canadian flag!







I called WCAX back and left a message! I will keep everyone posted on what I find out. Thank you all!!!

Previous updates can be found in the journal history tab at the top. Feel free to sign the guestbook!

Monday, November 3, 2014 5:24 PM CST

To date, Alex has received 62 cards from 24 states and FIVE countries (USA, Germany, Ireland, Canada and Japan)! The original facebook post has been shared an amazing 1211 times! We are tracking the progress both on facebook and at http://caringbridgeclassic.org/vt/alex/ so everyone can share in the fun!

Previously, Alex received two cards with money/gift card in them. I did not post that here, because I did not want people to think that we were requesting money, or anything else, other than cards, facts and lots of love  BUT, since he has received a couple more, I thought it rude of us not to mention the gifts. We will be working on thank you notes for these, yet another really good life lesson….except, the first $5 he received got separated from the card and I have no clue who gave it to him. I would really like him to give you a thank you note, so please feel free to private message me on facebook!!

ONTO the card fun!

Today, Alex received the following:

Kellie L & the Mason Alumni Relations Team sent Alex a card from Williamsburg, Virginia, home of Colonial Williamsburg, Busch Gardens and the College of William & Mary! They sent Alex a box with pompoms, a football AND a really neat sand cube. Alex thinks Allie Kittredge is going to be really jealous because it is her favorite color, yellow and Riley too because it is her favorite color, green. GO TRIBE!!!

Our wonderful mail person brought that box and all the mail right up to our door. I put it back there for Alex to find :)









Dan O sent Alex a card from Hartland, Vermont. The card is a super funny SpongeBob card sings Happy Birthday. Alex played it over and over! Dan is Spencer’s dad and has always had a soft spot for Alex and Alex has always loved him too. Dan sent Alex $20 and Alex said WOOO HOOO :)

Dan, Sarah, Jesse, Jacob, Joshua, Josiah and Jonathan B from Addison, VT sent Alex a card. They told Alex that they live on a dairy farm and milk 1200 cows. WOW, that is pretty amazing. They told us that their son Joshua just had his 6th open heart surgery and got lots of cards so they know how much it can mean to someone. Thankfully, Joshua is back at school. Alex said that he hopes he gets better and we will be thinking of him and the whole family! To Alex’s surprise, there was $5 in the card!

Lisa L sent Alex a card from Randolph, VT with dogs all over the outside. She said she LOVES dogs, and Alex does too!



Ronda, John, Ben, Maya and Pepper K sent Alex a card from Silver Spring, Maryland. Their mom passes the White House EVERY day on her way to work. That must be SO neat. They drew Alex a very sweet picture on his card!

Marigene & Howard P sent Alex a card from Garnett, KS wishing him the happiest birthday ever!

Jean W from Missoula, Montana sent Alex a card and told Alex that they have about 100,000 in the city which is right in the Rocky Mountains! We looked as some pictures on the ipad and they are beautiful!

Patrick and Rebecca A sent Alex a very funny card from Elizabethtown, KY. That is a small town near Louisville. Patrick is on active duty in the military and they have lived in 14 different places. Alex thought that was amazing since he has lived in the same house for all of his 13 (almost) years!

Leyda sent Alex a card from Hiroshima, JAPAN He was AMAZED!

Our good friend Chris Lamotte set up a spreadsheet so that Alex could enter his own cards into it to track the stats. Alex loves it! Thanks Chris!





You folks are really amazing and most certainly have made a difference to Alex. Thank you!

Saturday, November 1, 2014 5:23 PM CDT

The original post about cards for Alex’s birthday has 960 shares! I think we might make it to 1000, ASTOUNDING! What’s more, Alex’s face lights up every time we talk about his cards, his mapping or the mail! YOU are making a difference in his life, and for that I thank you! Previous updates can be found in the journal history tab at the top of the page.



To date, Alex has received 54 cards from 21 states and FOUR different countries (US, Germany, Ireland and Canada!) On Thursday, Alex received the following:

Angela (Angie) T sent Alex a card from Northfield, VT. Alex was Amazed that he shares a birthday with FOUR of Angie’s relatives! That is pretty neat!

Mary & Arnold C from Jay, VT sent Alex a card. We LOVE Jay and have been to the fabulous indoor waterpark there!

Jo-Ann (our fantastic mailman) from Williamstown, VT sent Alex a card and told him how fun it is to see his cards coming in every day! In the card were Solar System stickers that Alex loved! The outside of the card had really great decorations and Alex and I opened it veeeerrrrry carefully so we did not wreck it.

Heidi and Corie D from Fayetteville, NC sent Alex a card with a picture of a dog jumping through a sprinkler on the front  It made Alex laugh!

Janice H and family from Waycross, GA sent Alex a card with happy birthday wishes! Alex thought it was cool how close to Florida (and Mickey Mouse) Georgia is!

Mercy N from Raleigh, NC sent Alex a card and told Alex she was originally from Kenya in East Africa and used to be an exchange student in Vermont. We looked up Kenya on the globe and it is far, far away!

Katie and Gary (Nick, Jack & Vivi’s aunt and uncle) sent Alex a card from Pittsburgh, PA! We learned the Pitttburgh is called “Steel City” because of all the steel mills that used to be there and that there are almost 2,000 bridges in the area, mostly made of steel. WOW!

The Hammil and the Franconeri family sent Alex a card from Freeland, PA sent Alex a card. We really like the name Freeland!

Alex got a postcard from San Diego California! Boy that is a long way away! The card was not signed, but they did tell Alex that San Diego is the home of the football Chargers!

Tetyana and Danny B sent Alex a card from Boston, MA. The card plays “Celebrate” when you open it and Alex was bebopping to it. I wish I had video taped it, it was so cute! I went to law school with Tetyana <3 and she told Alex that she likes how he is always smiling. That made him smile even more!

On Friday, Alex received the following:



Robert and Debora P from East Montpelier, VT sent Alex a card. Their daughter Chelsea worked with Alex for one summer. We loved Chelsea and hope she is doing well!



Sandra, Tyler and Timothy W sent Alex a funny monkey card from Robinville, NH! Alex laughed! I went to law school with Sandra and NO I cannot believe it has been 7 years since graduation!

Lisa F and family sent Alex a card from Overland Park, KS! I went to highschool with Lisa F and goodness, that was more than a few years ago! Lisa told Alex that the state flower is the sunflower. Alex LOVES sunflowers and thought it was really neat that there was a sunflower on Lisa’s return address label too! Among other fun facts Lisa told us are that the Kansas state bird is the Western Meadowlark and Overland Park is the second largest city!



Amy F from Troy, AL sent Alex a cute monkey card that made Alex smile!

Tanya, Chester, Skylar, Maddison and Aiden send Alex a very sparkly card from Willsboro, NY! Among other facts that they share with Alex is that Willsboro has a population of 539 in 2014. That is even less than Williamstown! Alex loved the horse stamp on the flap of the card!

Bonnie and Chris C from Ransomville, NY gave Alex a card and told him that Ransomville is close to Niagara Falls! We hope to get there some day. They also have a great dirt track for racing!

Tracy D from sent Alex a card all the way from IRELAND!!! Tracy is a DJ there at 92.3 FM and sent Alex a picture!! http://tcrfm.ie/donal-oflynn-tracy-dunne-and-kieran-carbery-broadcast-from-the-celebrity-bainisteoir-reveal-day/ Since Alex now has cards from TWO very cool countries other than the US, we bought him a world map! Alex had great fun putting his dots on that one too!



Today, Alex received the following cards:



Kay and Mariah K sent Alex a card from Cambridge, VT with a singing, spinning gerbil. SO FUNNY!



Casey L and Dan H sent Alex a card from Essex, VT. They said their guinea pig Autumn says “Happy Birthday!
Andrea C from Dracut, MA sent Alex a card. She told us that the original inhabitants of Dracut were the Pennacook Indians!

Alex received a card from Seattle, WA with a great picture of Seattle on the front! We did not know that the worlds largest building is the Boeing assembly plant in Everett.

Tonona, Daniel, Amara and Rachael B. in Rapid City, SD sent Alex a card AND a postcard of Mount Rushmore. Mount Rushmore is in Rapid City and The Badlands there have had many Dinosaur fossil discoveries! Alex LOVES dinosaurs and thinks Mount Rushmore would be a GREAT place for a vacation!

Kelly K in Indian Orchard, MA sent Alex a card SUPERMAN card and told Alex he is a Superman in her book. I went to law school with Kelly, and we should all get together soon!

Darlene G sent Alex a cute card all the way from Olympia Washington!

Jodi C sent Alex a card from Pelam, NH that sings SHOUT while the exclamation mark is spinning! That made him laugh.

Lori G sent Alex a card from Mississauga, Ontario, Canada! He was really hoping for a card from Canada, YAAY, he got one. Lori told us that the greater Toronto area has a population of over 6,000,000 people. WOW, that is way bigger than Williamstown ;)

Thank you all for making Alex’s days brighter! This is not only going to be the best birthday EVER, but he is learning so much and truly it is heartwarming to hear from so many kind folks and read Alex the wonderful sentiments! Thank you all!

Wednesday, October 29, 2014 4:35 PM CDT

Alex LOVES his cards! The funny ones, the sweet ones, the monkey ones LOL, he loves them ALL! The original Facebook post has now been shared 781 times!! Alex’s website at http://caringbridgeclassic.org/vt/alex/ where we are updating so everyone can share in the fun has had 601 hits since we started. Alex has received 28 cards from 16 states and one foreign country! Alex wants to keep his cards right with him!



The cards that he got yesterday and today are as follows:
Zack, Carolee, Ember & Hazel S (Alex’s sister and family) from Saint Albans,VT sent a card that had Alex Roaring with laughter!

Cathy T from Swanton,VT told Alex that SWANton is famous for their 2 swans that live in the center of town. We have lived in Vermont our whole lives and never knew that!

Shelly B from Pleasureville, KY (what a fabulous name!) told Alex that Kentucky is known for its love of horses and the Kentucky Derby. She also mentioned that they have a cave system that has tours called the Mammoth Cave.
Gloria W from Marietta, GA sent Alex a sweet card, as did Jodi T from Lebanon, TN!

Steve, Katie, Jamie & Henry C from Smyrna , TN (a Nashville suburb) told Alex that Nashville is known as Music city USA!

Charlotte, Zachary (ages 3 and 5) from Cumming, GA made Alex the sweetest little handmade cards <3.

Christopher M from New London, CT sent Alex a card and told us that they are the home of the Whalers. Daddy had heard of them and told Alex all about them!

Nina S and her kitty Ava sent Alex a card from Shirley, MA, the most historic small town in the nation as well as a website with info about the town.

Brice and Wyatt W (my cousins children…does that make them Alex’s second cousins? I get confused!) from Louden, NH sent Alex a card and an open invite to New Hampshire Motor Speedway which we plan on taking them up on!

The Vogel Family from West Springfield, MA sent Alex a card and told us that their family is from Vermont too.
Alex got a card from the entire staff at Northwestern Orthopedics in St. Albans,VT! Alex loved the deer on the card and was impressed that the card was signed by NINE people and had Spiderman and Nija Turtle STICKERS on it :)



Phew! Alex is thinking about mail from the moment he gets up and is LOVING charting everything. He is thankful for each and every card he receives.



I will next update on Friday as Alex has a minor surgery scheduled for tomorrow. One thing for sure, looking forward to the mailbox will help put a smile on his face tomorrow! Previous updates can be accessed at the top of the page under the tab Read Journal History. Feel free to sign the guestbook. Thanks to all!

Monday, October 27, 2014 4:24 PM CDT

Alex was SO excited to get home from school today! He was zipping right along (his wheelchair goes 4.8 mph when he is seated!) and he RACED to the mailbox. I barely had time to snap a picture! He pulled out a whole bunch of mail, all for him!



Alex got a card from Margaret B (who I went to High School with!) in Olympia Washington. We learned that Olympia is the Capital city. The card had a picture of Mt. Rainier on it and Alex thought it was really cool that we could find Mt. Rainier on the map and also see what it looked like on the card! And Washington is really far from us, Alex said!



Alex got a card from Chris, Bernie, Nick, Jack Vivi from Chicago Ill. We learned they have great deep dish pizza and a sky deck that Alex wants to go on! Any volunteers to go with? Mommy is a little afraid of heights HAHA.

Alex got a very sweet card from Mona D in East Longmeadow, MA. And a card from Chris, Bernie, Nick, Jack and Vivi from Cincinnati Ohio- Home of presidents Wlliam Harrison, Rutherford Hays, Benjamin Harrison, William Taft, Ulysses Grant, James Garfield, William McKinley and Warren Harding. (Chris travels a LOT, and how awesome that she is mailing the cards from all these airports! <3 that girl!

Alex’s next card came from Eileen R in St. Paul MN which we learned is the Land of Ten Thousand Lakes. How neat!

The folks at the Williamstown Post Office caught wind of this project and Alex’s next card came from John (the postmaster) and the rest of the PO crew. Pretty exciting! We learned that the electric motor was invented by a man from Williamstown!

Alex got a package from Kim C in Rockland, ME that had lots of GREAT pictures in it! We learned that Rockland is the lobster capital of the WORLD. Alex wants to go there since he LOVES lobster!



Hmmmm, wonder why Alex has a globe out. Could be because he got a card from Erin R in BERLIN GERMANY! WOW, how cool is that!



Thanks for thinking of Alex!
The LeFevre’s

Saturday, October 25, 2014 1:42 PM CDT

Ohhhh, we are having fun in our house!! Yesterday, Alex got mail from Isabelle and Sarah in Hoboken, NJ. Did you know that Hoboken is the birth place of baseball AND the home of Frank Sinatra? Maybe you did, but ALEX didn’t, and now he does! We have geography, we have history, and all in a way that is FUN! Love it.
Today, Alex got a card from Mary Anne and Tom M. in Auburn, NY. We saw how close that is to us and looked at the Finger Lakes on the map. Alex also got a card from Sharon P. at Chicagoland Eskie Rescue. This is a fantastic organization and they rescue American Eskimo dogs (Alex has TWO Eskie’s and maybe one day we will be lucky enough to be able to rescue one). http://www.chicagolandeskierescue.com/ We learned about the state bird (Cardinal), that Des Plaines had the first McDonalds, and that Chicago dyes the Chicago River GREEN for St. Patrick’s day. Alex was AMAZED at this and we are going to look up pictures!
Alex also got a letter from Jericho, Vermont, the home of Snowflake Bentley! Since Alex might get a card or two from Vermont, we put up a Vermont map so Alex can see all the towns. Before we are done, we might be map central (fingers crossed!). Thanks for checking up on Alex’s birthday card project!

So THAT is where Auburn, NY is 

Alex with his new Vermont map!
Thanks for thinking of Alex!
The LeFevre’s

Monday, October 20, 2014 12:58 AM CDT

Alex got mail!!! :) He was pretty excited and was all "hey, why am I getting mail? "WOW, THREE!" His very first postcard was from his buddy Jack in Hartford, CT and he squealed because he just loves Jack (and Vivi too!). His second postcard was from MY BFF Chris, and came from Detroit, MI. Alex loved hearing about Henry Ford and the Model T! Alex's third card was a fab birthday card from the Dutta family in Portland, ME. We had a ton of fun charting these on his map and seeing how far they are from Alex's house. Alex wants to know "Hey, how did they know it is gonna be my birthday?" Mom just smiled ;)





Thank you all for bringing joy to our boy and feel free to leave a message in the guestbook if you get a chance!


Alex with his new map showing me where we are! He still has no clue he might be getting some letters!









Friends, I have a favor to ask. Alex is turning 13 this year. In years past, he has had lots of friends to a big birthday party....and he loved it. At 13, well, other kids 'grow out' of that sort of thing....and even if we did it, the party stuff, while still appropriate for Alex, would not really be fun for his fellow 13 year olds. Alas, I am not trying to be depressing, and he will still have a party BUT, and here is where you could come in... could you send him a card on his birthday? In it, can you put WHERE you are located so we can pin it on a map and get in a little geography at the same time (hehe!) Maybe even a fun fact about your town or state. His birthday is November 27, so there is lots of time! Thank you tons!

Alex LeFevre
16 Howe Street
Williamstown, Vermont 05679

We will be updating this page about this project :)

MaryBeth & Alex

Saturday, June 20, 2009 2:33 PM CDT

Things are great!

Many changes have come into Alex's life in the past few years. He welcomed a new brother-in-law, Zack in 2009,
a new niece, Ember Rose, in 2010,
and a new sister, Riley Quinn in 2010.

How he loves his girls, as you will see in the coming pictures :)

Alex has continued to amaze us with his progress, particularly speech.

He has a DV 5 augmentative speech device for school, but most everyone can understand what he is saying now, and he is saying more and more!

We won an appeal for a stand-up wheelchair and it has given Alex the most amazing independence. He can do everything himself with NO help, stand up, sit down, raise his legs etc. An amazing machine for an amazing kid.

Below are my favorite pictures of the past year.

Alex, Riley and Ember Memorial Day



Alex and Riley on Memorial Day



Alex’s smiling face. . . he has such a wonderful spirit



Look how special Alex and Riley are to each other . . . melts my heart



Alex at 6 flags, one of his FAVORITE places



Alex and Riley in the pool, another one of his favorite places



Alex, Riley and Ember and me in the pool



Alex and Riley snuggling



Carolee, Zack and Ember camping



Alex enjoying the ocean



Alex smooching on the best niece in the world- Ember Rose



Alex first day of school in his stand-up wheelchair



Family picture



Scott, Spencer and Alex



My 4 kids; Carolee, Spencer, Alex and Riley- a bit of an age span :)



As always, thank you for checking in on Alex and for all of the prayers! He has made amazing progress! Have a great fall!

Love, MaryBeth & Alex

Saturday, December 20, 2008 4:08 PM CST

The other night I was gazing at Alex as he slept and thinking how beautiful he is and how lucky I am to have him in my life. As I looked upon my boy, I realized that he has lost his little boy face. Gone is that toddler roundness and the little button nose. I almost bawled until I thought of how blessed we are that Alex is SEVEN and healthy and happy.



Alex’s school picture.





Speaking of birthdays, Alex had an amazing birthday party that he is still talking about! We had a birthday party at our house with 12 of Alex’s friends. After pizza and presents, we drove them all to take a train ride on the North Pole Express. This is a trip that is like the Polar Express. The kids wear their PJ’s on the heated train. There was hot chocolate and cookies and caroling and SANTA. We even saw the hobo! Then Santa gave each of us a bell. If you have seen the movie Polar Express, you know just what I am talking about. All of the kids were really well behaved and had a nice time. I think it will become a yearly tradition.



















I cannot believe it but I am done with my wrapping. I have never, ever been done this early. I am so used to having finals in December and power-shopping and wrapping LOL. Last year, poor Carolee had to help me wrap since Scott had a broken arm. Things are certainly looking brighter for us all this year! I have a job that I really like. I am home more than I have been home in years. Scott has a secure job. Things are very bright for us indeed.



Carolee and Zack are getting married in October. Alex will be their ring bearer. He was not interested in it at first, but they got him a ring bearer book that tells all about what the ring bearer does and how important it is. He is really looking forward to it now! That sissy, she knows just what to do! The save the date cards just came in today and they are perfect! This is going to be a really exciting year!



My Spencer went to early admission day at Johnson State College and GOT ACCEPTED!!! We are so excited! Now, two of my babies will be going to Johnson. Spencer was SO nervous on the day of his interview. After he got accepted, we had to run over to the bookstore and buy him a Johnson sweatshirt, just like we did when Carolee got accepted there. Two kids in college. . . yup, things are bright!



Before I began to write this update, I clicked on the “read journal history” tab. I can barely believe it, but I have been updating this website for Alex for four years this month! Take a peek back at some of the pictures and you will see what I mean about what a big boy Alex is. He has worked so hard to get to where he is. He has been playing video games. Can you believe it? He has gotten his left hand to work better and better. Righty is still a huge challenge, but do not underestimate this boy! And his speech. . . just amazing. We are so very blessed.

Thank YOU for checking in on Alex and for praying for him. Thanks for your words of comfort and cheer on days when I was not feeling so blessed. It is because of our family and friends standing beside us that we have gotten to this point.

From our house to yours, have a wonderful Christmas!



Love, MaryBeth & Alex

Wednesday, October 15, 2008 6:45 PM CDT

Alex is doing wonderfully well! He just lost one of his top teeth, and as you can see, looks like a jack-o-lantern!



We took Alex’s best friend Ben with us to 6 flags and they had an absolute blast. It is so wonderful to see Alex interact with other kids. Usually Alex is really quiet around a group, but around Ben he was singing at the top of his lungs. Scott and I were all smiles.







Alex, Carolee and I took our yearly trek to Adams Apple Orchard in Burlington. The apples were HUGE. Alex had fun picking apples and eating maple cotton candy. Best of all, he had fun rolling down the hill!




Original Video - More videos at TinyPic


Original Video - More videos at TinyPic


Original Video - More videos at TinyPic



Things have been really busy for us. We had Gerry's service which was beautiful and was well attended. I started a new job and Scott is working nights. I have not had as much computer time, which is why this update has been so long in coming. Things should be settled down now though so that I can update regularly again. I FINALLY have a job with a reasonable commute!

Alex has an upcoming appointment in Dartmouth. He has a liver function test this week and hopefully the results will be back for them to review with us by his appointment date.

Some really, really big news is that Alex learned how to drink through a straw!! This is absolutely life changing. Amazing is what Alex is. His perseverance and positive attitude are astonishing and we are so thankful for this wonderful boy of ours.

The other day, he finally said the words I have dreaded for so long. . . "Mom, what is wrong with me?" But of course NOTHING is wrong with Alex. God, in his greatness gave us the perfect son. To even have him next to us on earth is a miracle that I marvel over every day. To see the things Alex can do and the words he can say despite the injury that almost took his life gives me feelings that I can not even describe. Of course, an almost 7 year old isn't going to want to hear any of that mom gush, so I told him that nothing was wrong with him, but that he had a boo boo on his brain when he was born and that makes it harder for him to do some things, but that he is so amazing in how hard he tries. He was sad as I was telling him about his boo boo, but then he really liked all the praise I was heaping on him. Every word was true. My wonderful jack-o-lantern smile boy.

As always, thank you so much for checking in on Alex and praying for him. Happy Fall!

Saturday, August 2, 2008 8:41 PM CDT

Alex's Grammy L passed away on July 31. Although she was 84, it still came as a shock and we did not have much time to prepare, as if you really can. Scott is feeling pretty lost. I can’t even imagine what it must feel like to lose your Mom. There is so much more to say, but right now I am too tired to do it . . . She was a wonderful Mother, Mother in-law and grandmother and will be greatly missed.

Geraldine LeFevre (Farrar) age 18

Gerry with Carolee, Spencer and Alex.

Alex had Botox the week before last and it went so-so. He sounded a little "wheezy" when he came out of the O.R., or so the nurse said, so they did not call us right away. Consequently, when we got to recovery Alex was crying. I let the nurse know right off that I was not happy. Alex goes through enough without having to wake up alone. The nurse's reasons for not calling us changed a couple of times as I was drilling her for information. I was not impressed.



Dr. Nimec had to use all of the Botox in Alex's hips and there just was not enough for all his needs. With Botox, the amount you can use is based on weight. If Alex does not have his hips done, it is very likely that he will have to have hip surgery further down the road due to the constant pull of his muscles on the hip joints. There was not enough Botox left for Alex's calf muscles, which also really need it. Now Alex is doing serial casting to try to loosen the calf muscles. Those casts weigh a ton! Alex never complains. He is just the most amazing kid.

We went to six flags last weekend and I wrapped the casts in towels, then in plastic, then in tape. Alex ran through the sprinklers.



Despite all my preparation, those casts got wet anyway! You should have seen us with the blow dryer on the cold setting drying those casts LOL.

Thank you for all the prayers.

Love, MaryBeth & Alex

Sunday, July 13, 2008 11:23 AM CDT

Alex had an EEG at Dartmouth last week and the results show that he is having seizures that are undetectable to us. He has seizures as he is drifting off to sleep and in the early stages of sleep. You can't see them by watching him. Just as I thanked our lucky stars that the need for an increase in medication was found prior to a major seizure, he had one. It lasted so long, I was really scared. My poor little guy. He has not had another major one since then though, so the increase in meds is hopefully working. He will be having labs drawn in a few weeks to check his lamictal blood level again.

Alex has gained FOUR pounds. He really needed to. He also grew an inch. This is likely the reason for the need for increased meds.

We spent the day at Hampton Beach yesterday. It was an absolutely glorious day. Alex took his walker right into the ocean! It was so fantastic for him to be in the waves without someone holding on to him. He did it all by himself and boy didn’t he love it! Here are some pictures and clips of video.

The kids got pictures from one of those little booths. So cute!












And here is a little video of the fun!


Original Video - More videos at TinyPic

Alex has botox coming up. We will keep you posted. As always, thanks for checking in and please sign the guestbook if you can.

MaryBeth & Alex

Sunday, June 22, 2008 8:34 PM CDT

The summer is whizzing by! Alex had a recent Boston appointment for a checkup and things are looking good. He is ready for more Botox and is scheduled for Botox/phenol injections in July. Dr. Nimec was also quite clear that she wants him on Baclofen. Alex's neurologist wants him on this as well. There are just so many darned side effects and Alex's liver has to process all these things we are throwing in his body. It worries us. When Alex goes in for the Botox, we are having his liver tested. If all comes out well, we will start the Baclofen. As we were talking to Dr. Nimec, she told us that she feels Alex is a candidate for the Lokomat. This is a robot that helps people learn how to walk with the proper gait pattern. It has given some kids amazing results. As of 2 years ago, Spaulding was the only hospital in New England with this technology. I ran a search looking for other NE hospitals with it, but could find none. It is so exciting that Alex is going to get to do this. Dr. Nimec is going to write him a prescription for it and we will need to take Alex to Boston once every two weeks. We are SO lucky that Dr. Nimec is so cutting edge! Below is a picture of another boy in the Lokomat and a site for information.

http://www.ucpresearch.org/fact-sheets/07-2007-robotics.php



Alex has been doing REALLY well with his Ultraflex arm brace. He really likes doing it and says that he is a big boy that can do it himself. When he is in the brace, he can move his own arm and wrist without a lot of stiffness. We are hopeful that it will start to carry over to times he does not have it on. It is a little premature to expect that yet :) It is really exciting that Alex gets to work with this device.

Today we went to visit Trish and Joel at their farm. Alex got to see baby chicks and pigs and we had the most delicious strawberry shortcake.

Driving to Trish's house



Look how excited he is to see the chicken.





Then Alex got to pick strawberries. . . YUM



Carolee hooked us up with two new caregivers for Alex. Both graduated the year before she did and both are absolutely wonderful. Alex asks when they are coming all the time. He is in heaven. :)

Alex and Heather



Alex and Carrie



Scott graduated from the PN program at Vermont Technical College this weekend. We are very proud of him. Now he just needs to pass the NCLEX and he will be a licensed practical nurse. GO SCOTT!



We hope that everyone is having a great summer! Thank you for stopping in and checking on Alex. 60,000 visitors so far! Can you believe it? Thank you for those who signed the guestbook around 60,000, and thank you to those who sign regularly. We love to hear from everyone.

Much love,

MaryBeth & Alex

Thursday, May 15, 2008 8:04 PM CDT

Then you better start swimmin'
Or you'll sink like a stone
For the times they are a-changin'.

Oh Alex's times are a-changin' alright. He has had some major developments. First, he went to hinged dafos. This is huge. It takes more leg strength to hold himself up as the hard plastic is not doing as much work for him. He LOVES his new dafos. He thinks it is so cool that he can move his ankles, especially since it lets him squat easier.



The next development is his new arm brace. Alex looks like the bionic man with it on! It gives him a really great stretch in his right arm. We are waiting for the electrical stimulation portion of it to come in. Alex wants to wear it all the time just because it is cool. We are hopeful that we can assist that right arm to wake up.

Bionic arm :)





Alex and Sissy blowing bubbles.



Finally, Alex had a bunch of genetic testing done looking for any indication of mitochondrial disease. They took 4 vials of blood and the poor pumpkin puked all over the place. White as a ghost he was. Anyway, we were told that the blood testing would probably come back with some sort of showing, such as that he was predisposed to type 2 diabetes etc. because they basically test for EVERYTHING under the sun. Well, here are the results.

Genomic testing show "Normal Male"

Once I got done cheering, I thought to myself "how did a member of MY family get labeled NORMAL?!" :) We have no plans for further testing no matter how much we are pushed. Unless a mitochondrial disease cure is found, I am at peace with the decision to pursue no further diagnosis.

We are just so lucky to have Alex in our lives. Thank you for keeping him in your prayers.

Love, MaryBeth & Alex

P.S. I would LOVE to know who visitor 60,000 is. Let me know. Can you believe Alex has had 60,000 visitors? WOW.

Tuesday, April 1, 2008 7:25 PM CDT

I don't usually update this soon, but I wanted to post about Alex’s awesome weekend!

On Saturday, we took part in the Parent to Parent walkathon at St. Michaels college. This is an indoor event (thank goodness since it was March in Vermont!) and had tons of activities for Alex. He did face painting, spin art, beanbag toss and got lots of exercise walking around the track. Alex's team was made up of myself, our good friends Trish and Tiff, Alex’s Nanny and Bampa, his cousins Meadow and Amelia, Carolee, Spencer, and of course, Alex. Alex’s team raised over $250 for Parent to Parent!!

Ring toss prize





Cupcake decorating



And they are off!





Performers





Strolling around



Alex got one bead for each lap around the track. What a fun idea!




On Sunday, Alex did something that I have wanted him to experience for a couple years. He went SKIING!!! He absolutely loved it, just like I knew he would. My little roller coaster fanatic discovered the winter version of 6-flags! Thank you to Will and Mary of Vermont Adaptive Ski and Sports for showing Alex the wonders of skiing. It was quite a show to see two kiddos coming down the mountain at once! People were amazed. I made it for only two runs and then my legs felt like they were burning off. I half hoped they would at that point! Thank you Mary for snapping pics after I bailed. I was able to walk the next day, barely!

Next year we will start earlier so that Alex can spend more days on the mountain. He can’t wait. Alex was so tired that after we left he only woke up for supper and then slept right through to the next day. He was one happy boy though, bragging to all his friends! Here are some shots that I have to share.

Alex and Will



SO cool!







Alex, Will & Mary



It is so awesome is it that organizations like this exist. Alex got to experience something he otherwise could have only dreamed about. VT Adaptive Ski and Sport also has hiking a canoeing and kayaking. It is going to be one VERY busy summer :)

As always, thanks so much for keeping Alex in your thoughts and prayers. Don’t forget to sign the guestbook. Alex loves to hear about who comes to visit!

Love, MaryBeth & Alex

Saturday, March 29, 2008 6:57 AM CDT

Alex lost another lost tooth. This child just HAS to do everything different than Carolee and Spencer. They lost the bottom two, then the top two. Alex has lost three, all on the bottom. He was really excited about this one because the tooth fairy got to come again. We discussed the possibility of the tooth fairy and the sock fairy meeting. The sock fairy arrives every night and takes one of Alex's socks off his feet. Usually she hides it somewhere in the bed, but SOMETIMES she takes them with her. We have not figured out why she likes dirty socks yet :)

I took Alex to see Eric Carl¡¦s Very Hungry Caterpillar puppet show. He loved it. It was all done in the dark with black lights and fluorescent paint. It was a great show and it was sold out. After the show, the cast took questions and demonstrated how they performed certain parts of the show. We would go again, although we would leave WAY earlier since Burlington has very few handicapped spaces and it takes forever to find any space at all.

Carolee took Alex to see Horton Hears a Who. He loved that movie, but most of all he loved spending time with his Sissy. They have also gone bowling a couple of times.



Alex had a major seizure a few weeks ago. I totally jinxed us when I mentioned in my last post how he had not had any. It made me think of how very fortunate we are that his seizures are controllable and that his "major" seizure is not nearly as bad as many of his friend's regular ones. He just had a little growth spurt and he needed an increase in his meds. The doctor increased it as soon as we called and he has not had one since then.

A week after that, Alex had a great dr. visit. They corrected the weight snafu from his last appointment and he is on the same growth curve that he has been (about 19th percent for weight and 15th for height) so we are really happy. They increased Alex's prescription for Artane and we have seen increased speech ability. It is so beautiful to hear his voice. We are so very thankful for the gift of Alex.



Alex had a fantastic Easter. He found every egg that the tricky Easter Bunny left!





Alex absolutely loves to stand at the couch and catch his own balance. As you will see in the videos, he is doing a bit more than that now!







We are doing the Parent to Parent walkathon today, so I will update with pictures soon. Tomorrow, we have something REALLY special. I can¡¦t wait to tell you all about it. ƒº Have a great weekend.

Love, MaryBeth and Alex

Wednesday, February 13, 2008 4:44 PM CST

Alex's procedure went really well and he does so much better once he has botox. He was bouncing around a few hours later. He did get teary eyed as we were driving there, but was fine once things were underway. We just love Dr. Nimic. She is so fabulous and we are lucky to have found her. Dr. Filiano mentioned having the botox done at Dartmouth instead of Boston since they have recently started the program there. Thanks, but no thanks! We know a good match when we see it.



Great news! Scott gets to stay in the nursing program!! Yet ANOTHER weight off our shoulders. . . phew! They just decided the other day. I swear, half my hair is grey just worrying about that one. Thanks for all the positive energy that you sent our way!



Alex is doing very well in school. He just had an IEP meeting and it is time for the 3 year evaluation. His sense of humor really shines through since his speech is improving so much. The other day, we were listening to oldies on the radio and Carolee was singing "take the long way home. . ." and Alex said "Sissy, you ARE home. What are you thinking of?" It was SO funny.



We are ordering a couple new pieces of equipment for Alex. He has grown out of his chair at home and needs a new one. It is no wonder since he has had it since he was a year or so old LOL. I just kept adjusting it, but now Alex’s legs are just so long! The prices of those things are really disgraceful. I realize that you pay for the engineering, but PLEASE. $2500-$3500 for a chair that goes up and down and has lateral supports is one of the many reasons healthcare costs are in the state they are. Alright, alright, I will stop now. Anyway, he also needs a new potty. I got one years ago at kmart for $20. He needs one just slightly bigger because of his long legs and NOW we are talking over $1000. See what I mean . . . ooops, I was going to stop LOL.



Scott and I were just remarking last night that Alex has had NO seizure activity in a few months (knocking on wood, crossing fingers and toes and praying hard that it continues). He has had restful sleep all through the night and is such a happy and smart little boy. You should see him cruising through the grocery store in his walker. He really cruises along and almost always brings a smile to peoples faces (unless he is running into them lol).



I will leave you with some pictures of Alex and of his pups. Moon and Koda are an endless supply of joy to the whole family. It is so much fun to see them play together. Both know how to sit and how to lie down. We are working hard at "stay" but they just get so excited :)

















Thanks for stopping in and for your continued prayers for Alex. His daily progress is nothing short of a miracle and we thank God for him every single day.

MaryBeth

Saturday, January 19, 2008 7:48 AM CST

I have blessings to share and a few prayer requests.

We FINALLY received the mitochondrial blood tests back from Boston and Alex has no known mutation of mitochondrial disease. As previously discussed, this does not completely rule out mito, but combined with his lack of symptoms etc. it makes it much less likely. Of course we are ecstatic, but it does not in any way diminish our desire to help eradicate this horrible disease. We need more definitive testing and we need a CURE. . .

Alex lost a second tooth on the bottom. He loves it that the tooth fairy comes to his house :) The first day after he lost the second tooth was a challenge. He ended up crying in the morning because he could not chew his food. It was just horrible. Because of the stroke, Alex has Apraxia and really can’t move his food around his mouth with his tongue. Because of that, he chews almost entirely with his front teeth. It is such a huge miracle that he does not have to be tube fed, as most with similar stroke severity do. I was just praying that the tooth loss would not cause him to lose weight. The next day the sensitivity was gone and he did just fine with his food, thank God. We are just cutting up his food extra tiny and giving him lots of soft snacks. The school is on strict instructions to do the same. We are praying for continued success.

Alex goes for Botox in Boston on Thursday. We would ask that you pray for a successful procedure and outcome. We will continue to do the mitochondrial precaution with the anesthesia, just in case. We are so lucky to have such a wonderful advance in medicine for kids with spasticity. We will let everyone know how the procedure goes.

We got a new van!! There is one huge worry gone. We absolutely love it and so does Alex. It is blue, which is his favorite color. It is brand new. This was such a huge blessing that we no longer have to worry about.

Finally, we would ask for prayers for Scott’s situation. He still has 6 more weeks that he cannot lift with his broken arm. The powers that be in his nursing program are considering making him take a medical leave. This would be a horrible thing for all of us. If he is made to take a medical leave, he will lose his federal funding for the program, so even if he went back, he would have to work full time while doing so. In addition, that move would force him to get a full time job immediately because his unemployment would be cut off. He can’t do that with a broken arm. He would not be able to get disability (as in short term) because he has no employer. It would be catastrophic to us. He really CAN do everything in the nursing program but lift. Please pray that he gets to stay. He will make a fantastic nurse.

Thanks for checking in on Alex. Please sign the guestbook so that we can let him know that you were here! Below are a few pictures of Spencer and Alex playing one of Alex’s new Christmas games.

Sunday, December 30, 2007 7:03 AM CST

Alex is doing well. He lost his first tooth yesterday! He was so excited.

A few weeks ago Scott rolled our minivan and broke his arm when he hit black ice. The van is totaled. Scott almost lost his spot in his nursing class because of the inability to do clinicals (hands on patient work). It appears that they are willing to work with him, thank God. That would be a major blow to our plans. We are so blessed that he was not more severely injured and that no one else was in the van with him. So far, he is healing well, but he is looking at a total of 15 weeks of recuperation. He broke his humerus bone (upper arm) and they don’t cast that. He has been in a sling to help align the bones so it can heal better. We are attempting to get a new van because it is almost impossible to take Alex’s equipment anywhere in a car. You really have to shove his walker and almost take the whole thing apart to get it into a car. I am not sure if we can get a loan though, since I only started my job two weeks ago.

So Christmas was a barrel of laughs. I did all the shopping myself and most of the wrapping. Carolee helped me with wrapping, but boy did I feel guilty about that. The child is not supposed to wrap . . . even if she IS 19 :) She was happy to help though. I never did quite find that Christmas spirit that I usually have. Oh well, there is always next year. It was fun to watch Alex open his presents. Now HE had Christmas spirit. He loved all of his presents. So did Carolee and Spencer.



HAPPY NEW YEAR!!

Love, MaryBeth & Alex

Monday, December 3, 2007 4:43 PM CST

Alex’s buddy Kirkland is an angel.



Kirk fought a very long battle and he was only 6. I met Kirk and his Mom Kelly through Caringbridge and she has kept an amazing journal of their families journey with mitochondrial disease. Kirk's website is here He was a one of a kind kid who inspired so many to give money for mito research and to live each day to the fullest. We are going to miss you Kirkie.

Ok, what I really want to do is scream from the rooftops. . . ENOUGH already, we NEED a cure. Then I want to swear until everyone’s ears are blue. . . and then. . . I want to clutch Alex so close to me and run away. To a place where we have never heard of mitochondrial disease and innocent beautiful kids losing their lives to it. The fear for Alex . . . and for me is in the pit of my stomach and the marrow of my bones. Sure, TODAY he is symptom free. . . but this disease is such a mystery that no one can tell me about tomorrow. Eventually the tears stop and I take a deep breath and carry on. After all, what other choice are we given?

I will leave you on a more upbeat note. Alex learned how to drink out of a cup all by himself! Below are two short little snippets of him doing it. You can see his pup Koda in the background. My wonderful little boy told me “I don’t need ANYBODYS help.” That makes me cry too.





If you could please send a prayer up for Kirk and his family, we would surely appreciate it. Thank you so much for checking on, and praying for, Alex. You have no idea how much it means to us.

Love, MaryBeth & Alex

Wednesday, November 28, 2007 2:23 PM CST

Thanks so much for all the wonderful birthday messages in Alex’s guestbook. He loved them! He had a wonderful birthday. Alex’s Nanny and Bampa came up on Saturday and we had a great dinner and cake He actually had two little parties, one with my Mom and Dad and a pizza party with his friends at an indoor pool.

I can’t believe Alex is 6! The time just raced by. We are so lucky that he is in our lives. He has changed every single one of us for the better, and I am so thankful for him.

Great news! We have not seen any more seizure activity since my last post. What a relief. Thank you for all the prayers, they are clearly working.

Here are some pictures of the birthday boy!











As always, thank you for thinking of and praying for Alex.

Love, MaryBeth & Alex

Sunday, November 18, 2007 9:20 AM CST

Alex has had a couple really big seizures this weekend. One yesterday lasted about a minute. While that may not seem like much to many seizure warriors, Alex usually has many more that don’t manifest themselves outwardly, so it is highly likely that those are going on as well. He is exhausted. When we were shopping yesterday, he actually asked to be carried back to the van rather than use his walker. He was pale as parchment paper all day. The good news is that he slept for 13 hours last night and he did not have a major seizure. We can tell that because he always vomits after a bad one. We would truly appreciate some prayers regarding this issue.

As far as Alex's recent appointments . . .we are back to "possible Mitochondrial disease." Dr. Filiano agrees with Dr. Anselm that Alex's presentation is far from typical, but says that there is really not much else we can do to rule out Mitochondrial disease. There were some elevated blood levels that indicated Mito and which cannot be explained away, but none now. Basically, it is hard to get rid of the diagnosis without some definitive testing method, of which there is none. We need to resign ourselves to not knowing completely and work to raise money for better testing and more research into this horrible disease. To simplify it, there are two different ways to "have" mito. It can be your primary diagnosis, OR it can be your secondary diagnosis. If it is your secondary diagnosis, than the dysfunction in the mitochondria are caused by whatever else you have wrong with you. Perhaps like pregnancy induced diabetes (gestational). For whatever reason, being pregnant causes some women to become diabetic. Once the pregnancy is done, most are no longer diabetic. Remove the primary issue and the second issue resolves itself. With Alex’s mito, the primary diagnosis (stroke) may have caused mito until the damage from the stroke healed.

Of note is that they found Alex to be underweight. I believe that the LNA weighed him incorrectly. He can not stand independently, so she had him kneeling on the scale with his feet touching the ground. Obviously, she was a real bright one. We get him weighing a full 5 lbs more than she did. I did not think it was that big a deal until the end of the appointment when Dr. F asked us to see a nutritionist. That is never a bad idea, so we are going, but the FIRST thing I want is a corrected weight and if it was a mistake, to have “poor growth” removed from his chart.

Dr. Filiano wants us to give Alex fish oil as it helps with brain function. He also wants to try him on a drug that may help Alex control his body movement better (balance, oral muscle control etc.). It is called Trihexyphenidyl hydrochloride (Brand name Artane). Of course, there is a list of possible side effects as long as my arm, so we will be starting out slowly. If anyone has experience with this drug, shoot me an email. It is commonly used for those with Parkinson's disease.

We got to look at Alex's most recent MRI and what an amazing technology that is. I will tell you that it scared the heck out of me though. Alex has so much scar tissue in his brain that it is amazing that he is so functional. Dr. Filiano showed us where the main damage was and what the brain should look like/function like in that area. I cannot even describe what a miracle our Alex is. If that stroke was an INCH further to the front he would likely be severely cognitively impaired. It makes me want to weep just to think of it. We are so fortunate that we have such a wonderful bubbly, smart young man.

Alex's birthday is rapidly approaching! How is it that my baby is going to turn 6? Where did the time go? He recently was sent a birthday box from all of his friends at Eli's Angels. He had so much fun opening it! Here he is with his new birthday quilt.



Alex got to visit with Santa already this year. He told him he has been a VERY good boy. Here are some pictures.





Alex is having a pool birthday party next weekend. I will make sure to post pictures. As always, thanks for thinking of Alex! Please sign the guestbook while you are here.

Sunday, November 4, 2007 6:02 AM CST

Wonderful news! I passed the Massachusetts bar exam. I found out this past Friday. What a huge relief! It seems surreal that I passed both Vermont and Massachusetts. This is not the outcome that I predicted :)

Here are my boys carving their pumpkins. They had a lot of fun.









Halloween was absolutely lovely. The weather was perfect and Alex had so much fun. We were trucking down Main st. and he was saying "that lights on, that lights on" "my bucket is not full yet" so cute. He was saying "Happy Halloween" very clearly too!



Alex loved being Spider Man, but hated the Spider Man mask because it kept shifting on his face. He went trick or treating with it off. We just told everyone that he trusted them enough to reveal his identity. They got a kick out of it.



When we got home, we dumped out all of Alex's candy and he was in total awe that there was so much. There really wasn't, it just looked that way to an almost 6 year old. He was like WOW. My big boy, the FIRST thing he tried to do with his candy is SHARE it with his brother. What a kid.

Alex's appointment with Dr. Filiano is this Tuesday. If you could be thinking of him then, that would mean a lot to us. We will be getting Dr. F's take on the second opinion. This coming week, I have a second interview at a firm only 35 minutes from home. If you could send good vibes my way, I would appreciate it too. Jobs like that in VT are pretty hard to find. Thanks for checking in on Alex and don’t forget to sign the guestbook.

Love, MaryBeth & Alex

Tuesday, October 23, 2007 7:35 PM CDT

Busy, Busy, Busy. That pretty much sums up how things have been. I do want to start off by saying that we received the "visit notes" from Dr. Anselm regarding the mitochondrial disease second opinion, but the DNA sequence tests have not come back yet. The visit notes just parrot what she told us while we were there and little that we did not already know or suspect, for instance;

Most Mitochondrial disorders don't manifest at birth, and the one that does has chronic high lactate levels; Alex does not have chronic high lactate levels. Alex has no symptoms consistent with a Mitochondrial disorder.

Of interest though was her statement that the detection of mitochondrial dysfunction in Alex's skin biopsy could have been a result of the stroke and organ failure that followed. I had suspected that it could be a result of the stroke, but I never thought of him as having "organ failure." While he was in the NICU, he had reduced urine output and they restricted his fluids for a time and then his kidneys began to work properly. It is interesting that the results could have been skewed by that.

She also stated that she does not recommend muscle biopsy in kids that have reduced physical ability (like Alex due to his stroke) because under-use of the muscles can skew the results of a muscle biopsy and so can botox!

So. . . we are still waiting for the test results. The MRI films indicate no progression of brain damage whatsoever, which is wonderful. As always, I will update when we know anything more.

Our family was asked to attend and speak at the 2007 Make A Wish of Vermont Walk for Wishes. What a fantastic event! It was very emotional. There was a candlelight ceremony and that is where we spoke about what Alex's wish meant to him. Afterwards, Alex polished up the dance floor!





SO; since then, we have gone to 6 flags a couple times, seen Lori Berkner, gone to a Mitochondrial Disease walk, the foliage train and gone to see Sesame Street live. It is no wonder I am exhausted all of the time! Thankfully, we are doing NOTHING this weekend!!

Alex got to take a friend with him to 6 flags and it was so cute. His friend is in the 6th grade but had never been to an amusement park. I took him on the loop coaster (the boomerang) to break him in :)











He was so sad that his friend could not ride next to him. Look how pathetic he can look!



Alex absolutely LOVED the Lori Berkner show. He danced for almost the whole thing. After the show, he got a special surprise. HE GOT TO MEET THE BAND!! Lori gave him TWO kisses.

He was pretty quiet during the whole backstage part, and I wondered if he was really exited. When I was putting him in his car seat to go home, he said in an awed whisper "I got to meet Lori Berkner!" It was adorable. He blushes every time he tells someone about those two kisses lol.



The foliage train was wonderful as usual. Alex loved it (and so did Spencer our train buff).



Here are two of Alex at 6 flags last Saturday.





Sunday was Sesame Street. Alex had a really good seat right next to the stage. He got to high five all the characters when they went by. He loved it!



Alex has a couple appointments coming up in early November. One is with his Neurologist and we are anxious to find out his take on Dr. Anselm’s second opinion. We really don’t know how to react. The second opinion is really not based on any more evidence than the original diagnosis, so we don’t really trust it. Oh how we WANT to though.

Alex also has an appointment with Dr. Nimic to see if he is ready for more Botox. I am sure that he is.

The other night, Carolee and I were sitting and chatting and Alex was chatting along with us. During the conversation I stopped, and counted. Alex had just said a SIXTEEN word sentence to his sister, and we understood every word! What a miracle. He is one amazing kid! He speaks more, and clearer, every day.

As always, thank you for dropping in and checking on Alex. Your prayers are much appreciated. Please sign the guestbook while you are here.

Love, Alex & MaryBeth

P.S. I forgot to say that Koda is the PERFECT addition to our house. He and Moon are best buds and Alex absolutely loves their antics. He is a really wonderful dog.

Wednesday, September 19, 2007 11:59 AM CDT

I PASSED THE VERMONT BAR EXAM!!! Ok, just thought I would get that off my chest :) I will not hear about the Massachusetts Bar Exam until November.

We met Amy at the airport on Saturday and met KODA!! What an absolutely fabulous puppy (not that I am prejudiced). He has a very gentle disposition but at the same time has not taken any lip from Moon at all. They are getting along wonderfully well. Our bed is overflowing and that is just how we like it!

We got to show Amy a bit of Boston and we were stopped by literally droves of people who wanted to touch Koda. He did not mind one bit, and we certainly loved showing him off. It rained at first, but then it cleared up and we had a great time at Quincy Market. Hopefully Amy and her husband will come back for a visit soon! Here are some pictures.













This was Koda's first night. It was a snuggle fest!



While we were at Quincy Market, Alex made us tell everyone who came to pet Koda that he was Alex's dog. It was so funny. We would say "Alex wants you to know that this is his dog" and Alex would shout out "YAH" with a big grin. Alex adores him.

On Sunday we took the pups and went Apple picking. Koda was pretty tired from the day before, so we carried him a lot. Here is Alex picking apples.





Koda in the shade.



Carolee and Zack with Koda and Moon.



Here is Alex riding the pony. Doesn't he look like a pro? His upper body strength has come so far since he started Hippo therapy.



Zack and Koda



Koda was not too interested in the pumpkins.



The dogs each have their own bowl that I filled up with water. They shared one, then went and shared the other one till they were both empty. It was so funny!



Alex has some exciting events coming up. In October he is going to see a Sesame Street Live show and also he will be seeing Laurie Berkner live. She is one of the singers on Noggin. He absolutely adores her and sings at the top of his lungs whenever she is on. It should be a great time at both.

Thanks for checking in! Have a great week and don’t forget to sign the guestbook.

MaryBeth & Alex

Tuesday, September 11, 2007 6:59 PM CDT

Hi everyone!

We hope that you had a fantastic labor day weekend! We certainly did. We spent the weekend camping in Lake George NY with my parents (Alex’s Nanny and Bampa). The weather could not have been better. We went to The Great Escape while we were there. Scott and I had forgotten how they are not very handicapped friendly there. We had a bit of a rough start to the day because of it, but the rest of the day was wonderful. Of course, I have PICTURES :)

Here is Alex and his Nanny and Sylvester.



Alex and Spencer loved the swings.





Nan and Alex.



For us, this next ride was a tearjerker. We thought that perhaps Alex would never be able to go on a ride like the motorcycles. I cinched the belt on so tight that I don’t know how the poor kid could breathe. He was so excited to go on all by himself. Well that lasted for about 5 seconds LOL. When he got off the ride he said it was BORING! Ha.



Here is my Mom and dad and the tiger that my dad won when he sunk an almost impossible hole in one! He was Alex’s hero.



I tried getting this shot of Carolee 5 different times. Each time, Zack stuck his tongue out. HA, payback time. Betcha didn’t think I would put it on LOL.




Al and tweety




Alex had great fun in the water here too. We later got him a pair of crocs and they fit right over his dafos. That way, we don’t have to bring a pair of extra shoes!





I called last week, and I called again yesterday and Alex’s mitochondrial blood test is still not back. It is so amazing to me that you can receive the bill before the results! I will keep calling and post the results as soon as they are in.

Now, for some really BIG news! We are going to have a new addition in our house! This Saturday we are picking up our new PUPPY. We are all just overjoyed and we really lucked out that we got him.

He is the most beautiful little American Eskimo pup. Yes, that is the same breed as our Jake, but this pup is not meant to be a replacement. He will have his own very special place in our hearts. He comes from a great breeder. . . in IOWA :) Here is their website and it has pictures of our pup on it. Qannik Eskies He is “purple boy.” There are more pictures below, of course. The pup has a champion mom and a champion dad and we are going to try to show him. Alex absolutely loves watching dog shows on TV and I am pretty sure that he will love watching them in person even better.

The owner of Qannik Eskies, Amy, has never shipped a pup before, so she is coming with him! How awesome is that. That way, he does not need to be scared all by himself. We are counting down the days! So here are the promised pictures.



Our pup is furthest to the right in this adorable picture.



Here he is just a few days ago. I can’t wait to see him!!





Alex and I went out puppy shopping and came home with a ton of loot for the pup. We are not positive, but we think that Alex has picked the name “Coda” for him. Of course the field of names was limited by what Alex can easily pronounce. I will take pictures of when we get him and post them. We are meeting Amy and the pup at the airport.

Thanks for stopping by and please sign the guestbook while you are here! Have a great week.

Love, MaryBeth & Alex

Tuesday, August 28, 2007 8:08 PM CDT

Alex is doing wonderfully. We went to 6 flags yet again. Alex insisted on being in his walker from the moment we arrived. Here he is running to the entrance.



Isn’t he a cool dude?



He walked all over that park. He did not get out of his walker except to go on rides from 10-4 that day! He slept well on the way home. He got to play in the sprinklers again while we were at 6 flags and it was so much fun to watch him have independent fun!

As I was standing there watching him, some stranger came up to me and said that she worked with disabled adults and “good for you for bringing him out in public, there is such a stigmatism against them” yada yada. Well stuff like THAT just ticks me off to no end. Good for me for bringing him out in public? He is our SON and it isn’t the 1950’s anymore! Another example. . . we were in line at KFC (trans fat free by the way :))and right in mid-sentence of my order the cashier says “so what is his diagnosis?” “Stroke” I say, wanting to pelt her with sporks, and she says “oh, I just LOOOOVE, all disabled children” at the top of her voice. I no longer wanted to pelt her with the sporks, I wanted to impale her with them. Evil? Yep, but I cannot believe the extent that people don’t mind their own business. I certainly would never, ever ask a stranger about their medical condition. If it was only once in awhile. . . but MAN, it is several times each time we go out. It starts to wear on my nerve (yup, after the bar I only have one left!) after awhile.

OK, enough griping (sorry). We had a fantastic ice cream social. It was HOT and sunny, the perfect ice cream weather.

Just a topping or two.



Afterward, the pool was a popular place to be.


Here is Alex with his best friend Patrick and his PCA Matt.



Alex and Patrick



This is Tom and Brandy’s son Luke in the pool



The boys playing in the sandbox.



Carolee is back at college and Spencer and Alex started school yesterday. Here are some pictures.





We are still waiting for the results of Alex’s Mito blood test. Should be another week or so. Then Alex has an appointment in November with his neurologist. Other than that, things have been fairly quiet. His lamictal level came back at midpoint and his seizure activity is GONE! WOOOO HOOOO!

My job in Boston is going really well. I am blending right in and my country bumpkin ness is not showing :) I go for walks every day at lunch through the streets of Boston and I still can’t believe that I work there. It is a very beautiful city. The drive has not killed me. . . yet :)

Thanks for your prayers for Alex. They WORK! Have a great week. Please sign the guestbook!

Love, MaryBeth & Alex

Thursday, August 16, 2007 7:09 PM CDT

Things are going so well with Alex! Today, he had his hearing checked. For once it was a test that was "just routine" rather than because Alex is Alex :) Guess who has PERFECT hearing? We are so blessed.

So Lynn brought up a great question in the guestbook that I thought I would address. Why is the lack of a definitive diagnosis so important? She is absolutely right, if Alex has mitochondrial disease, we are doing everything that we can for him. There is no cure. . . no real treatment to stave off that beast. BUT, what if he doesn't have it? (tune out now if you have heard this story before LOL)

Real life situation-We went to a couple specialists at Dartmouth when Alex was really little. He had just started to sit up on his own for short periods of time. We were ecstatic. (I carried around a stool with us wherever we went for MONTHS showing off this huge accomplishment.) So we were at the appointment and Alex was exhausted (due to his earlier sleep deprived EEG) and when I tried to show the "specialists" that he could sit up, he wouldn't. Basically they put in his report that he couldn't. They went on to say in the report that this was consistent with low energy from mitochondrial disease and further they recommended AGAINST Alex getting a new, more challenging walker because he would never be able to use it for anything more than very short distances because of the mitochondrial disease diagnosis.

We had to fight for the walker (fortunately not hard because there were others that believed in Alex i.e. Trish and Kim) but we of course fired the doctors. The point is, no child should be judged just based on a diagnosis like that. I am afraid that the diagnosis will haunt him in that same way. Every new doctor that we meet is shocked when they see Alex in person because he blows their socks off. He doesn’t "look" like a mito kid or have any of the symptoms (besides that first huge stroke). Their expectations are lowered just based on the diagnosis.

(Tune Back In!) Add to that the fact that there are some treatments that I would like to pursue that are pretty much foreclosed to a child with a mitochondrial disease diagnosis. Take HBOT for example. Now I am not saying that I believe in it, but I would like to learn more about it. It certainly does not hurt a normal kid, but a MITO kid is a different story. If you saturate a body with oxygen when there is a defect in the oxygen transport chain, you can cause all sorts of problems. I know, some might be shaking their heads about HBOT, but acupuncture used to share the same reputation (unproven bunk) but not anymore. Anyway, I am not saying I would do it, just that it would be good to have the option to.

Finally, Scott and I are not sure that we are done having children. Alex was not supposed to be our last, the "plan" was to have two more (Alex and 1 other) but we put that on hold. Now it is breaking our hearts to see him alone in the backseat, not to mention that he is a more than a little spoiled. It would sure be wonderful to rule out a genetic disorder like Mito.

So there you have it. Is any of that VITAL? Probably not. We can fight for what Alex needs and stick with conventional treatment. Not sure what we will do about the last one though!

Well, true to form, I have some pictures to share. More smores! Take note of the length of Alex's stick!











Here is one of Alex's dog Moon. Isn’t she a cutey? Sadly, our other dog Jake went to live with the angels a while back. I should have mentioned it sooner, but it is still so fresh and . . . raw. He had a rare form of cancer. Oh how we all loved him. . . Now we have just little Moon, but we hope to get her a companion sometime soon.



Thank you for all the prayers and for listening to me ramble :) If you have a moment, please sign the guestbook!

Love, MaryBeth & Alex

Thursday, August 9, 2007 7:58 PM CDT

I am glad that I did not fire off a journal entry right after Alex’s appointment because I needed some time to reflect on it. Basically we are in the same position that we were in before he went . . . no one has a clue whether he has mitochondrial disease. I was lucky that I had talked to a family that had already gone to this doctor and they gave me a heads up about how the doctor diagnoses, or I would have ended up severely disappointed (thanks Paul!!).

The doctor took the history and then said that based on it she did not really think Alex had mito. How helpful is that?!? Not at all. Then she went on to say (after questioning) that a muscle biopsy would probably not really be helpful because it only shows known mitochondrial mutations which would likely turn up in the blood anyway. Also, she feels that the Botox and increased muscle tone from the stroke would probably skew the results.

I feel so conflicted. The diagnosis is based on a test that everyone agrees is unreliable (although dr. Anselm also said that muscle biopsies are very unreliable unless you turn out to have a known mutation) but I refuse to stop giving Alex the supplements (which she suggested) just based on clinical presentation. What if he is one of the kids that they work well for and that is what is keeping him healthy? It is just not worth taking that chance.

She did mention that she had not had time to review Alex’s latest MRI and that there had been some questionable results regarding progression that she would be reviewing before drafting her opinion letter. Dr. Filiano had already told us that he felt that there was no progression and that the pictures were likely just taken from a different angle (or something like that).

Anyway, after our incredulous looks, she at least agreed to give Alex this mito blood test that was not available when he was younger. . . with the warning that it is UNRELIABLE. URGH!!!! You just can’t win. . . but. . . on the other hand I do KNOW just how blessed we are. So many families are fighting for a diagnosis and their children are so ill. Alex is not (knock wood and send up a prayer).

We did get a tiny bit of hopeful news if she is correct. She said that skin is never reliable for oxygen transport chain defects which is what Alex’s skin was tested for. This points to a mistake, although it is really likely that we will never know for sure. This disease is just so hard to pinpoint, which is why we are going to continue fighting for a cure no matter what.

Anyway, on to more fun news. We went to six flags last weekend and Alex had the best time that he has ever had. He RAN through the sprinklers and had such fun. I will share a couple of videos and pictures.





Al and dad



flying



octopus



Sylvester



Here he is riding the new Thomas the Train ride.



Alex and Wags the dog



Here is Alex on his trampoline. He only needs a little help! Below is also a video of him on it.





Thank you for keeping Alex in your thoughts! If you have a second, please sign the guestbook.
MaryBeth & Alex

Thursday, August 2, 2007 7:13 AM CDT

We were just in Boston yesterday and met Alex's new orthopedic surgeon for the first time. He was very, very impressed with how well Alex is doing! He said that Alex's hip x-rays could not be better and that he could tell that Alex is a weight bearing kid! He was really impressed to hear that Alex chooses the walker over the wheelchair every time. I LOVE those kinds of appointments :) He also feels that Alex does not need tendon lengthening or anything of the sort right now. We are to just keep doing what we are doing and go back every six months or so to make sure that all is well. Evidently this is a really important time for Alex because he is growing so fast and bones grow long faster than the muscles and tendons can catch up. We need to basically force (ouch) the tendons and muscles to do it because they won’t on their own as much as they should.

While in Boston I got all set up for my new job. I start on Monday. It was really cool to show Scott and Alex the building that I will be working in. I got fingerprinted and my picture taken, so I should be all set. You should have seen us, walking around Boston in awe. I can hardly believe that it is all coming true. I now have a room just a few minutes outside of Boston where I will stay a couple nights a week. The schedule will be remarkably like my school schedule. Once Spencer gets closer to graduating high school, we will consider our options. I really like the Salem NH area, just a half hour to 45 minutes from Boston. We have a few more years to worry about that though!

Alex had been having seizures quite frequently. It took us a while to determine what they were because, as usual, they did not present as "typical" seizures (if there even is such a thing). Each night, Alex snuggles with me on the couch. We read a few books and then he drifts off to sleep while I snuggle him. What he was doing is waking up out of a deep sleep, lifting his head with a blank stare, and vomiting (always all over me). We thought he was eating too much at dinner or he had overexerted during the day and/or become overheated so we tried to control those factors to no avail. Finally it dawned on me that it might be a seizure (duh). Fortunately the neuro is pretty responsive and they upped Alex’s meds immediately. He has only had one such episode in the month or so since and he was having them a few times a week, so I am confident that it was seizures. We now know what to look for, although with Alex it will probably present differently next time just to keep us guessing!

Here is Alex in his sandbox. He loves making sand castles.



We went to six flags last weekend for the very first time this summer. I feel like I dragged everyone down with my study schedule, but at least its over. We were happy to find that there are LOTS of new rides that Alex can go on. They have a whole new wiggles section and parents can go on all of the rides with the kids (which is HUGE for Alex). Also, they have a new Thomas the Train section where you can RIDE on Thomas. That was a big hit. I think we are going back this weekend too!

We also went to Hampton beach again this past Tuesday. We went with my friend Chris and her husband Bernie and their son Nick. Nick and Spencer were fast buddies, which was great. It was so fun to be able to sit and just relax. Chris just graduated from UCONN law and she got a cherry job in Hartford. We are both stressing about the bar exam, but we wont find out for MONTHS. That hardly seems fair. Anyway, Chris brought the wine (in a box, of course) and it was certainly relaxing! I can think of no better way to spend a day! Alex loved the beach of course, and Mommy and he sat in the waves and buried his legs. He thought it was such fun when the water came in and unburied them. I brought both cameras but only took 3 pictures the whole day! Hmmmm, could it have been the wine?

Chris and Bernie (she is going to pulverize me for putting this on!)



Alex playing



Today, Carolee and I are going to the spa. A 90 minute massage is just what I need to be back among the living after that horrible test. Oh, facials and pedicures too. . . good thing I have a new job lol.

I will be updating a lot more frequently now that I am allowed to have a life again. Next week we will be going on Tuesday to the Mito specialist in Boston (Dr. Anselm) to talk about whether Alex's diagnosis is accurate. Butterflies over that one. I will be around signing guest books tomorrow. Thanks so much for keeping Alex in your thoughts and prayers. Don’t forget to sign the guestbook if you get a chance!

Love, MaryBeth and Alex

Thursday, June 28, 2007 6:57 PM CDT

We have been granted a reprieve. This is the SECOND time that this has happened. On Botox day, Alex’s dr. said that he was at the surgery or casting point. When he went back two weeks later, the Botox and stretches were enough to change her mind for the time being! HOORAY!!

Alex is having a wonderful summer. He is in a new program that he absolutely loves. Sort of like a day camp right at the school. He has several buddies that he pals around with and he does not ever want to come home. What a wonderful thing. We are hoping that he can just continue there during the school year as they have after school care. As anyone with a special kid knows, finding childcare is a HUGE challenge and finding a good fit is a miracle.

A few appointments coming up in August. . . Alex has one to see the orthopedic surgeon in Boston. If/when he does need surgery; this is probably the people we will go to. He is going so they can get a baseline on Alex and keep an eye on him.

Also Alex has an appointment with a mitochondrial specialist for a second opinion. I barely dare to utter those words (or write that line as the case may be LOL). This is not at MY insistence. This was actually suggested to me by the neurologist that gave Alex the diagnosis (based on the stroke, elevated lactic acid levels after the stroke, and a skin biopsy). Basically, he said that he would have expected some other manifestation of the disease by now (regression, loss of abilities) and because that has not happened he questions the diagnosis. I just don’t know. From the very first moment that Alex received that diagnosis I have been waiting for the other shoe to drop. I have seen Alex’s friends, SEVERAL of them, go into slow downward spirals and die. I have watched helplessly as other friends with this horrible disease have suffered and lost abilities and I have, at times, expected Alex to begin showing the same symptoms. To even have the possibility that it might not be true is. . . breathtaking.

At first, I was against the second opinion and the probable muscle biopsy that it will entail. It was only after a couple of Alex’s friends found out that their diagnoses were not correct that I began to rethink it. Alex’s buddy Kirk turned out to have a different but related disease, although, unfortunately not one with a cure. I just began thinking “what if” Alex has something else that is TREATABLE, and “what if” . . . oh gosh, what if he has NOTHING else? Anyway, the appointment was made months ago and it is finally getting close.

I leave you with some pictures of the beach. We went one sunny day a few weeks ago and it was glorious. Alex, had such fun.











Thank you for keeping Alex in your prayers. Please drop us a line in the guestbook to let us know you stopped by.

Love, Alex & MaryBeth

Saturday, June 2, 2007 8:35 AM CDT

Wednesday, June 6, 2007 UPDATE

Alex's botox went great, he woke up even more quickly and bright eyed than usual. He was such a good boy. When he woke up we had a Diego balloon and a new ball waiting for him :)

We did get some bummer news though. The dr. feels that it is time to either serial cast Alex or do muscle lengthening surgery :( Alex goes back in two weeks and we will get full details and information on our choices then. Unfortunately, I will not be able to go because I have to study for the bar, but Scott will have a(long!) list of questions to ask.

We have an appointment with an orthopedic surgeon in Boston for the beginning of August. Alex's Dr. will be able to work closely with him in the future, which is why we are sticking with Boston for both of them.

Thanks for checking in and have a great week!

Love, MaryBeth & Alex

Our new PCA, Matt, has turned out to be a fantastic match for Alex. Both love to be outdoors and Alex is getting a tremendous amount of time in his walker outside. His strength and stamina have both had a marked improvement since Matt started working with him. Matt is a nursing student at Norwich. Alex just adores him and looks forward to him coming.

Alex has spent so much time running in the driveway that I put on his sneakers the other day and found a HUGE hole in the toe. His big toe was sticking right out! I did what any other red-necked American does. . . I got out the duct tape LOL. Alex thought it was hugely funny to have duct tape wrapped around his sneaker. Then I absolutely could NOT send him to school like that, so he has been going in his dress shoes. Poor kid. Hopefully no one has picked on him. Alex’s new dafos and sneakers are scheduled to arrive sometime next week. With all this running around, I think we are going to get him a second pair of shoes.

The other night Alex and I were playing and I noticed a really large bruise right above his knee. It looked really painful and he did not want me to touch it. As the night went on, it seemed to get bigger and I started to panic a bit. I put an icepack on it for awhile. It was one mean looking bruise and no one could figure out how he did it. The next day I was playing with Alex in the driveway and saw that every time Alex made a turn in his walker his leg hit the walker in the exact spot where the bruise was. He did not like it one bit of course, since it hurt. The reason this happened is because his walker is too small for him and it is time for him to go into his new one. Well that one was at the PT’s office so I padded Alex’s leg so he could still run around. I used a small towel and. . . you guessed it. . . duct taped it around his leg. You should have seen him, it was hilarious. Here comes Alex running up the driveway with a duct taped shoe and a duct taped leg LOL. Poor little boy! Funny thing, the leg padding helped him so much he looked up at me and said “thanks mom!”

Alex has his new walker now and his leg does not hit at all. I was worried about stamina since the new one is so much bigger and heavier than the old. No problem for Alex! He has been running around so much, it does not seem to be a problem at all!

I can’t even explain how well Alex is talking. Complete sentences, words we didn’t even know he knew just popping out of his mouth all the time. Such a huge blessing. We all understand him, Matt understands him, and we don’t have to ask him to repeat nearly as much as we used to. He tells us what he is thinking and feeling, not just what he wants. His sense of humor is so much more apparent now that he is so verbal. Scott and I marvel at the miracle every day.

Here he is running through sprinkler



Last Sunday, my nieces were baptized and I was honored to be one of their Godmothers. Here is a picture of them with their proud parents.



We got a new fire pit and Alex LOVES making smores. Don’t worry, Carolee had a good hold on him. Both Carolee and Spencer are really protective and do a great job keeping Alex safe.




Marshmallow face



Over the past couple weeks, Alex's eyes have been really red. I kept waiting for gunk, thinking it might be the beginning of an eye infection. The redness would start to go away one day only to return full force the next. We took him to his dr. to see if it might be allergies and sure enough, she thinks it is. We got some eyedrops and they seem to be helping except Alex HATES having them put in. It is so weird that you can develop allergies all of a sudden like that! Hopefully that is ALL he gets, not the stuffed up sinuses so many people deal with.

I got some really, really great news last week. I GOT the federal job in Boston. It is the one that I wanted and a fantastic opportunity. So currently, I am looking for a room to rent in the Boston area so that I can stay down there a couple times a week. That would be way better than driving back and forth every day (3 hours each way) and will be extremely similar to what I have been doing during law school, so no big changes for Alex. The job starts right after I take the bar exam, so I have a little time. We are all really excited.

Alex has a botox appointment in Boston on June 5. If you could keep him in your thoughts and prayers that day, we would really appreciate it. Anesthesia and a mito kid is always nerve wracking. Thanks so much for dropping by, and don’t forget to sign the guestbook!

Love, MaryBeth & Alex

Monday, May 21, 2007 8:53 AM CDT

So it finally happened. After a long, loooong road, with my family there to cheer me on as they have from the beginning, I graduated from law school. I don't even know how to describe it. There was of course happiness, satisfaction and pride, but also sorrow as I said goodbye to so many people that I have become friends with over the past four years. It seems that we all will scatter like leaves on the wind now. Mostly I kept those thoughts at bay and just enjoyed the moment and being surrounded by family and friends. Here are a few pictures.

Here we are at the Dean's tea the night before graduation.



Here is a family shot at graduation. Alex was great as usual :)



Scott and I



Mom and Dad and I



YES! There is a REAL diploma in there!!



The next day we went to the graduation of my friend Chris at the University of Connecticut School of Law. She was one of the speakers and part of her speech was about how inspired she was by ALEX! I dissolved in a puddle of tears it was so sweet. She did a fantastic job, I am so proud of her!

As for the Al man, he survived graduation very well. He was a really good boy throughout the whole thing.

Alex has an appointment tomorrow to be fitted for new dafos and to get new orthopedic shoes. You should see the ones he has now. . . he wore the bottoms right out!

Alex also has an appointment on June 5 for more botox. He is definitely ready and we can't wait for that right arm to loosen up a bit. Alex also has an appointment for a second opinion regarding the mitochondrial disease diagnosis. This was at his neurologist's suggestion. He will be seeing Dr. Anselm in Boston, but he could not get in until AUGUST. I am not sure if we are headed towards a muscle biopsy, but we will see what she says.

Here is a picture of Alex enjoying the warm(er) weather. Of course, we have had nothing but RAIN lately, but hopefully the sun will shine again soon!



Thank you for visiting and for praying for Alex. Have a great week!

MaryBeth

Sunday, April 15, 2007 2:04 PM CDT

We hope everyone had a HAPPY EASTER! I can't believe how far behind I have been on updates! For those who have not seen it yet, I created a montage of Alex's life. You can view it by clicking on "play" below. You do not have to sign up for anything or become a member in order to view it. The second song is a poem written by Mattie Stepanek, a child who died of mitochondrial disease. It is sung by Billy Gilman.

Make photo slide shows at www.OneTrueMedia.com

We have had a whirlwind couple of weeks. We went to see Diego at the Boston Opera House and we had the best seats in the house! We were in the third row and Alex had the perfect view of the show. He was absolutely enthralled!





They gave all the kids masks that they had to hold up at certain times in the show. Here is Alex as baby jaguar.











Then we spent a weekend at the indoor waterpark in Lake George NY. It was Scooby Doo mystery weekend, so we followed clues to find Scooby doo and did lots of fun activities.











Here is Alex running with all the rest of the kids to find Scooby Doo.









The water park was great and Alex loved the lazy river :)

Easter was a lot of fun.










We went to Alex's Nanny and Bampa's for Easter dinner and we saw Alex's new cousins Meadow and Amelia.







I also wanted to let everyone know that the state has decided to CHARGE our old PCA. I just found out a few days ago. I will post any developments.



The craziness scale is about to increase dramatically around here. I have finals in just a few short weeks and graduation in mid may. Scott and Carolee both have finals coming up and Spencer is playing baseball. There are a TON of events and activities between now and graduation. . . I can't believe that I am finally going to be DONE! As always, thanks for stopping in and praying for Alex. All you have to do is look at him to see how much those prayers work!

Love, Alex & MaryBeth

PS. Holy smoke! I just saw how close to 50,000 visitors Alex is! Please sign the guestbook to let us know what number YOU are, especially if you are number 50,000!!!

Saturday, March 24, 2007 3:21 PM CDT

April 6, 2007

Please check out the Montage that I made of Alex's life.

Make video montages at onetruemedia.com

Hello everybody! Alex is doing really well, although he has the sniffles today. Here are some pictures taken right after a recent snow storm.





We have been busy still trying to find a replacement personal care attendant. As anyone who has ever done that can tell you, it is NOT easy. There are a whole lot of weirdo’s out there. . . like the person who showed up the other day for an interview. Scott had her sit down for a minute while he came upstairs to get me. He went back down to give her an application to start filling out and she was wandering throughout the house. When she saw him, she went back into the kitchen quickly and sat back down. He stepped into the living-room to check on Carolee and Alex and when he went back towards the kitchen she was leaving. She saw him and said “I’ve got to go” and left! How weird is that? Scott showed me on the floor where her wet footprints led all the way through the house to the living room doorway where she must have peeked in on Alex and Carolee. I have no idea what spooked her, but good riddance.

In another vein, many of you were so supportive when we lost our old PCA due to her theft of our belongings. I would love to be able to give an update, but as of right now, I have not heard whether the state is going to charge her. . . but I DID find out something that can be reported to families by the agency so that this will not happen again. The PCA, Rebeckah Dupree, had her nursing assistant license indefinitely suspended by the state of Vermont because of. . . . FRAUD. Unfortunately, this information was not available when I hired her (I checked). The decision was only made 9/14/05. And she had told us that she had just let her license lapse because she was pursuing a different career. . . HA. The decision can be found at http://vtprofessionals.org/opr1/searchdiscipline.htm by just scrolling to the Nursing Assistant section. It contains full documents. If you ever need to hire a PCA, your state should also have information available like this on the secretary of states web page. Unfortunately, it only covers occupations licensed by the state, so PCA misconduct would not be on it, but it might be helpful to check anyway.

Back to the most important subject. . . Alex! The other day, he pointed to a frame that was turned around on the table and said “who is in that picture?” Wow. His words, especially in long sentences, are sometimes really hard to decipher but Alex is SO patient with us until we get it. Then, as he practices particular words over and over, he gets better and better at them. He is just the most amazing little . . . scuse me . . . BIG boy. He hates to be called little, or Mommy’s baby! He will say, “I am NOT a baby . . . I am a BIG boy!”

Pam Carmen sent him a wonderful book of knock knock jokes which he absolutely loves. We tried to get him on video saying one of them, but each time he turned it into potty humor and cracked up. Then, of course, we ALL cracked up which encouraged him to keep it up.



Here is Alex snuggling with me. This is how he goes to sleep every night.



He just loves lolly pops!



Scott got some really fantastic news last week. He has been accepted into the LPN program at Vermont Technical College. Alex says WAY TO GO DADDY! We are really proud. It is a VERY competitive program. We know that Scott is going to do fantastic.

Yesterday, I went to a second interview with a federal agency in Boston. It is looking VERY promising at this point. I actually interviewed with the director of the New England branch of the agency and it went very well. It could be over a month before I know for sure, but I will post when I find out. Do I have a clue how it would work with me working in Boston and living in VT? Um, no, but we will figure it out LOL, we always do! PSSSSST, only 44 days until I am officially done with law school! WOOOOO HOOOOOO, not that I am counting

Tomorrow Alex is going to see Diego at the Opera House in Boston and he is so psyched! We have been counting down the days.

We got a new swing for Alex since his old one was getting too small for him. Today was the first time that it was warm enough to try it out and he had a blast. Of course, I took pictures





Thank you so much for keeping Alex in your thoughts and prayers. We really appreciate it. Please say hello in the guestbook too. Thanks!

Love,

Sunday, February 25, 2007 11:57 AM CST

Alex had his very first dentist visit last week. I know, we are a little late getting started. I was able to find an office that specializes in pediatric dentistry and in disabled children in particular. We got GREAT news. Alex’s bite is perfect. Alex’s teeth spacing is perfect. His tooth grinding is not causing problems at this point. We left the office really happy. He goes back in 6 months for a cleaning. They did not do a cleaning this time as they are trying to get him used to the dentist gradually. He did really well and only startled a little when the chair went back. He loved being able to pick out a toy and a sticker at the end!

I had the flu last week. Fortunately, no one else in the house has caught it. I have not been that sick in years. I am over the worst of it and hopefully on the mend. Alex has a little head cold, but is getting over that as well.

Look what I received in the mail the other day! You just might know the kiddo in the picture :)



A few months ago, a request for pictures for this event was made on the Parent to Parent bb. I, of course, was only too happy to volunteer Mr. Alex’s picture. How sweet that they used it. . . and such a worth cause. We are, of course, planning on walking in the event. Anyone who wants to join our team, or donate to our team, please let me know.

Carolee is home from school for winter break. Alex is ecstatic and does not want to let her out of his sight! Here he is this morning on her bed playing her guitar.



Moon is a crazy dog and makes Alex laugh so much. Carolee had Alex standing in a chair this morning and up came Moon.





Alex received a very special bear from Heartbeats For Mito. It was so sweet that I just had to take a picture!



You can check out the heartbeats for Mito site at http://www.heartbeatsformito.org/

The increase in seizure medication has really been helping Alex in every way. He is sleeping through the night most nights now, so we think that seizure activity is at a minimum. In addition, he is not groping for words. He is doing really well with his speech. He has become the ultimate fan of the knock knock joke! The only problem is, I only know a few! Anyone that has any short, funny knock knock jokes, please share! Alex would appreciate it.

Here is a video of Alex jumping on his trampoline and singing :)



We have a couple upcoming fun events. Next month, we are going to see Diego Live in Boston. We were able to get some tickets that are only a few rows from the front. I know that Alex is going to love it! We also are going to the indoor water park in Lake George NY for a few days. That is going to be a blast too.

Thank you so much for stopping by and checking on Alex! Please leave us a message in the guestbook so that we know who has dropped by. Have a great week!

Love, Alex and MaryBeth

Tuesday, February 6, 2007 6:40 PM CST

Poor Scott. He just could not get Alex to sleep for his EEG. Daddy is DADDY and Alex was much more interested in wrestling and poking him in the eye than he was in sleeping! They did get enough information to see that the waves were abnormal. That, in addition to Alex’s recent groping for words and low blood level has us on an upward dosage of the meds. I think this is a really good thing and just what we would have wanted any EEG to show us. They are going to try yet again to get him in therapeutic range.

We also finally took them up on their offer of a second opinion. Dartmouth is sending Alex’s records on to Boston. I am not sure if this is leading to a muscle biopsy but we shall see.

We ran an add in the paper for a new PCA and have had 6 responses so far. This is fantastic. We are going to break up the hours that Alex is allocated to make at least 2 positions so that we won’t be without an aide again. HA, you never know what life is going to throw your way, but, at least that is the plan.

Things around here have been pretty wonderful despite the cold. Carolee and Zack took Alex out in the snow to play the other day and Alex did NOT want to come in! It was really nice. Also, Alex got to spend some time with his buddy Trish, which made him really happy.





A pretty funny story . . . the other morning, Scott, Alex and I were snugging in bed and Alex reached up his little fisted hand and tapped it on Scott’s forehead while saying “knock, Knock, Knock . . . Nooooobody Home.” I just about split a gut. We laughed so hard and now Alex keeps doing it to people. Scott swears I put him up to it, but I DIDN’T. Little wiseguy came up with it all on his own.


Our dog Jake is doing pretty well. The specialist said that he has anywhere between a week and six months left. . . not very helpful but then again they don’t have a crystal ball. We tend to think it will be sooner rather than later because the neck lumps are really spreading, but for now he seems comfortable, active, and content. There is really nothing we can do as surgery has a 60 percent mortality rate (in addition to its $5000 price tag). We have been really blessed to have such a wonderful dog in our lives.

While Carolee was home for the weekend, she and Alex also made cookies. They had them all nicely arranged on the baking sheet and ready to go in the oven when Alex reached out, scooped one up and shoved the whole thing in his mouth! What a ham!



Thank you so much for your kind messages in the guestbook and your emails regarding the PCA situation. It really helped me through the anger and the hurt. In the long run, I think we are really better off. Obviously she was disturbed. I will keep you posted on whether they decide to press charges.

Monday, January 29, 2007 10:30 AM CST

Alex is doing wonderfully well, however I am absolutely heartsick. Yesterday, we caught Alex’s personal care attendant stealing from us. She took my ipod video (which is worth about $600 with all the stuff I have downloaded to it). I only realized that it was missing because I had just bought speakers for it because Alex enjoys watching it but hates the earphones. I loaded a bunch of Diego podcasts onto it for him. When it was not where Scott left it, he remembered that she had gone out to her car, and had other strange behavior. The ipod was barely visible stuffed under the back of the front seat and her doors were locked. When we asked her if she had seen it she came up with this whole story as to why she stole it, saying that she was trying to get fired so that it would not hurt so much not coming back. She then ran out to her car, opened the door and threw the ipod onto the blacktop.

When the police got there she told him that she was not really trying to steal it, she was going to give it back. (Her car was blocked in which is why she didn’t leave) She said that she just wanted to get fired so that she could have Sunday’s off to go to church! HE BOUGHT IT, despite the fact that we informed him that she had asked us last week for Sunday mornings off and we had said that was fine (evidenced by the fact that yesterday was Sunday and she came in at 1 pm.)

If she is not charged, she will be absolutely free to care for other disabled children and adults (as well as the elderly). There will be no record of her theft at all. Not only do I feel personally violated by this theft by someone who has been working in our house for a YEAR, but I am fearful for other families who will encounter her should she continue working in this field. I just don’t know what to do now. I feel like I should write to the officers superior about his conduct (no matter what we said, he said her story was consistent and believable especially “given how upset she is.” And basically that it was not a crime as long as she did not intend to take it. WHAT!?!? What do you call having it in your locked car?? Well, it was visible, he said, which is consistent with wanting to get caught. The ipod was barely visible, and only a small corner of the brand new blue case was visible. I am so disgusted.

So I called her this morning to get our car seat back (she drove off with it) and she says “your not supposed to call me” Like I am the one who did wrong. Obviously the officer made her feel like she would not be charged. Disgraceful. Of course, we are now in a huge bind regarding care for Alex. . . Enough about that. Please just pray that she does not do this to another family.

In other news, we have sadly found out that our dog Jake has cancer and it is terminal. Jake is just the best dog, we have even used him lots of times in therapy. Scott is taking him to a specialist today to find out how long he has.

I am sorry that this entry is so depressing. If you could say a prayer for Alex tomorrow for his sleep deprived EEG, we would appreciate it. I am unable to go because I have an appointment in Washington DC. Please throw up a prayer for me as well. I have to fly back in a puddle jumper (a whopping 9 rows of seats) and I am already afraid to fly. I will let you know how the EEG goes. Thanks.

MaryBeth & Alex

Sunday, January 7, 2007 8:06 PM CST

UPDATE Wednesday, January 17

Alex's fever broke late Monday night. By Tuesday afternoon he was running a fever again. The vomiting stopped on Monday though. Last night, he seemed to be sleeping better and the fever broke again. He went to school this morning, but this afternoon he is really wiped out. Thank you for your prayers. Alex seems to be on the mend, but I think it might take some time.

MaryBeth

UPDATE Monday, January 15

Alex has the stomach flu. It is the real deal, not just an upset stomach. This is the third day of it. He could really use your prayers right now. The first night, he vomited every hour (including his seizure meds) and was up the whole night. He was sick all that day, but slept throughout the next night.

He seemed to be feeling a little better when he got up yesterday, but then began vomiting again (of course, his seizure meds). Scott gave him another dose a little later in the day which he managed to keep down. Now he is running a fever of 102 which we are trying to fight with motrin.

Thank you!

MaryBeth & Alex

Christmas was such a blur! Today is the first day since mid-December that I could just take a deep breath and relax. I had final exams until December 21st and then did almost ALL my Christmas shopping on the Friday before Christmas :) It was more than a little crazy. I still have not even sent out Christmas cards. At the rate I am going, they will be Easter cards :)

Alex is doing really well. We got GREAT news right after Christmas. Alex will not need serial casting right now! He had some new night casts made with much more dorsiflextion. The credit for the improvement in Alex's leg goes directly to his daddy who could not bear the thought of Alex having to hobble around in his walker in a cast. Scott spent a lot of time stretching Alex and it really paid off!

A few weeks before Christmas, Alex got a new puppy. She is a West Highland Terrier and Alex named her Moon. He is very entertained by her antics, but he watches her from a distance because she is very rambunctious. She is a little bit of a nibbler too (a vast understatement!) so someone always has a tight hold of her when she is around Alex. She will grow out of it, and be trained out of it I am sure. She will be a really good companion for Alex when she calms down a bit. She is adorable.



We had our pictures taken right after Christmas. Traditionally we have them done before but not this year. The benefit of being so late was that it was a nice quiet session with no screaming kids in the waiting room. In fact, we were the ONLY ones there! Of course we were suckers and got the CD. Here are a few.







Alex has a sleep deprived EEG on January 30th and we could surely use prayers for an uneventful test. I am reasonably sure that Alex is still seizing at night. His startles have picked up a bit too. His Lamictal level, which was just done a few weeks ago, came back extremely low again. I bet we are going to be ramping the meds up again and hopefully they will help.

Alex's speech is progressing by leaps and bounds. It is the most amazing thing to be able to understand your child. He talks ALL the time now. His clarity is really improving too. Hopefully the Lamictal will help yet again. He has always (knock on wood) had an improvement in speech when his Lamictal levels are increased into the therapeutic range. According to his neurologist, this is because his seizures are in the area of the brain where speech is produced, so there is a kind of interference when his meds are not right.

Over the last few days, I have been copying all of our videotapes to DVD. What a trip down memory lane. It has certainly given me a new appreciation on how far Alex has come, but it is funny, I don't really remember Alex being as "bad" as it seems he was. By that I mean that it is really noticeable watching the tapes just how much trouble that he had with his hands/arms right from birth. It is kind of painful to watch. At the time though, we were just concerned with helping him improve and cheering him on. I guess we were sort of looking at him through rose colored glasses all along. We still are :) but some small part of me wonders what others see looking in. Is it the brilliant little boy full of promise that they see? Or is it the little boy who needs lots of help?

And of course the Mom worry comes out. Have my "rose colored glasses" made me miss something that we could be doing to help Alex? Is it really a way to bury my head in the sand and not face the reality of the situation? I just don't know.

In the month of December, four of the members of Eli's Angels lost their battle with mitochondrial disease. I cannot even imagine what the parents of these children are going through. In addition, our dear friend Kirkland is struggling and his Mom and Dad know that his time on earth is very limited. If you could stop by his page and say a prayer for him and his family, we would really appreciate it. Alex’s buddy Kirk’s page

Thank you so much for checking on Alex and for keeping him in your prayers. I know it makes a difference and we really appreciate it. If you have a moment, please sign the guestbook so Alex knows that you were here. Have a wonderful week.

Love, Alex and MaryBeth

Saturday, December 2, 2006 6:58 AM CST

I finally finished this journal entry!! I hope that you did not have trouble loading it on your computer. I don't usually have them so long or with so many pictures, but it would be a shame to break the entry about Alex's trip into parts! Please feel free to sign Alex's guestbook. This page is usually updated every week or so. I will be leaving this entry up until after January 1st though. If you would like to be sent an email notifying you when Alex's page is updated, you can sign up right above this journal entry. Thanks for keeping Alex in your thoughts and prayers! I hope you can see from the pictures what joy this trip brought Alex!



The stretch limousine came to pick up Alex (and us!) on Saturday at our house. We had everything packed on time (for a change) and away we went to Burlington where we stayed at the Double Tree hotel. There we had a nice relaxing dinner and then soaked in the Jacuzzi and had a dip in the pool.



















Alex was running in the halls in his walker and got a really good workout. Those halls go on forever! We were up before the crack of dawn to catch our 4:30 am shuttle to Burlington Airport. We made it on time yet again! Our flight took off right on time. Alex slept for most of the flight. I was pretty white knuckled at takeoff and landing. I must admit that flying is not my favorite thing to do. That is totally weird for a roller coaster junkie to admit. We landed in NY and had an hour and 45 minute layover. We took off to our final destination, ORLANDO, and yeehaw, I got to takeoff and land again :) Alex was wide awake for the second leg of our journey and he LOVED looking out the window and loved flying in general.



Someone from Give Kids The World (GKTW) met us with a big sign that said Give Kids The World Welcomes Alexander LeFevre! It was very cool and exciting. She showed us where our baggage claim area was and helped us get our rental car. The next thing you know, we were on the road to GKTW!



WOW, WOW, WOW! What a place!! Even after visiting their website and seeing the pictures on there we were unprepared at how grand GKTW is. You could spend all your time HERE and not be bored. The people are just marvelous and there are so many smiles. It is amazing how quickly you fit right in too. After all, we all have a lot in common. The Star treatment for Alex started the moment we arrived! In fact, he got his own star. It is like a mirror and we will put his name on it. It goes up on the ceiling in the castle of miracles where it will join over 50,000 other stars from previous Wish Kids.



Alex went on the carousel, had an ice-cream sundae, rode a train and a train tram and checked out lots of cool things at the Castle of miracles. Of course, I have a picture or two to share!





























In all, I have over 400 pictures of Alex's trip! Of course, I will only be posting the very best here :)

At Give Kids the World (GKTW) we were given a big packet of information at orientation. In the packet was three parkhopper passes to any Walt Disney World park, two parkhopper passes to any Universal Studios park, one pass to Sea World and information on about 10 other area attractions (i.e. Bush Gardens, Gator land etc.) that they would be more than happy to get you free tickets for if you asked. We were a little overwhelmed with all the choices. Since we had 5 days, we decided to stick with the Disney Parks and Universal Studios.



We chose to go to Universal Studios for the first full day. As we were walking over to breakfast Alex spotted some horses, a barn and a ring. He, of course, wanted to take a ride. It was so cool to just be able to say yes and have him hop right on! The people were great and Alex told them about "his" horse Holly. He is such a great little rider :) Afterward, they gave him a hat to keep and let us take his picture with their guitar. Such a cutie!








Universal Studios treated Alex like gold from the moment he arrived. We were kind of unsure how it worked. We were told that our "Make a Wish" shirts might get us some benefits and we were told the same thing about Alex's "Give Kids the World" button. We were unprepared for what was to come though. The first thing we did was to go to the back of the line for one of the rides. The next thing we knew, we had a Universal employee next to us saying "oh no, this little guy is not to wait in any lines today" and then we were escorted to the very FRONT of the line. We just all looked at each other with big eyes. It was so sweet when Carolee and Spencer thanked Alex for being so special that we all got to the front of the line.




The same was true for every single character line that we saw. We did not even have to identify ourselves; the shirts did it for us. Even more amazing, when there were more than one character in a row (like Curious George standing next to Scooby) the Universal employee would just automatically take Alex to the next character even though there was a separate line for each. He had such a wonderful time! The characters recognized his shirt too and every single one of them took extra time with Alex. They were soft and gentle with him and you could see the joy shining right out of his eyes. It was amazing.








Shrek spent SO much extra time with Alex that he taught Alex how to pick his nose! It would have grossed us out if we were not laughing so hard. . . the ogre!






Spongebob had his very own store and his very own photographer. Lots of individual rides have their own photographer and you can buy the picture. It was here that we learned that for Make a Wish kids, ALL PICTURES at Universal are FREE. We were like, "you are kidding, right?" but they were not.








Alex just loved all of the rides and all of the characters at Universal. It was an absolutely amazing first day of Alex's wish!



The next day we saw Barney and friends at Give Kids the World right after breakfast. It was fantastic! They even gave Alex miniature stuffed Barney and Baby Bop figures.







Then, we hopped onto the carousel and Barney and Baby Bop hopped on too!





Then we went to Animal Kingdom for 1/2 of the day and MGM studios for the other 1/2.

Here is Alex all ready for Animal Kingdom





The Disney parks were ALSO front of the line access! It was amazing. One of the busiest weeks of the year and we did not miss anything that we wanted to go on! There were only 3 rides that we went on the entire week that Alex could not go on and we just broke into pairs and he did not even suspect :) One of those was Expedition Everest at Animal Kingdom. What a BLAST!



Alex also loved the safari! He loved seeing all the animals up close. We also went to see Finding Nemo live. It was an amazing show.















We had a character lunch at Universal Studios. The stars were JoJo and Goliath, as well as the characters from Little Einstein. Alex loved it that they came right up to our table. They treated him extra special. Leo (the guy with the red hair) actually went away for a minute and then came back with a sorcerer Mickey just for Alex! It was so sweet. Here are some pictures.



Jo Jo and Goliath





Leo



Right after we left, we went next door and there was SORCERER MICKEY! He was really happy to see himself in Alex’s arms!





Mickey and Mickey and Alex



Then, we saw a bunch of other characters. Alex was in heaven!







We spotted Donald and Daisy duck with a HUGE line of kids to see them. Alex got to see them right away and it was absolutely amazing. Donald plopped right down on the ground and smoothed out part of his feathers for Alex to sit. He and Daisy then just started playing with Alex for a really long time. I wish you could have seen his reaction. The photographer was snapping away and the whole family (except Alex) was in tears. The photographer actually thanked us, with tears in her eyes, for allowing her to be a part of Alex’s day.













Earlier, I told you about all the stars on the castle of miracles ceiling. Each one represents a child whose wish to Disney came true at Give Kids the World. This is just a TINY portion of the ceiling which stretches through several rooms.







NON-DISNEY NOTE Alex had a Boston trip on December 5 for Botox. The trip went well, but we found out that he will have to undergo serial casting right after Christmas for his right leg. This can be pretty painful and we had hoped to avoid it. Please add him to your prayers.



The next day, we went to Universal Studios Islands of Adventure. Suddenly, a COLD snap hit Florida! There was actually snow one night just a little north of where we were. We ran out and picked up sweatshirts and we were fine. I think it was actually a little better for Alex that way because he tires more easily in the heat. As you can see from the pictures, we decided that being identified with our shirts was a really good thing, so we washed them at our villa each night. Fortunately, the villas at GKTW have a washer, dryer and detergent too! I just stopped and picked up a bleach pen for Alex’s shirt (that boy’s shirts seem to ALWAYS attract chocolate!) and we were good to go! We did buy Alex a couple hats while we were there.







Universal has a whole Dr. Suess section. It is so awesome. All the drawings in the books are life sized. There is even a Cat in The Hat ride which we went on twice!









I could not resist taking these pictures of the kids on the amazing carousel.









There was even a little roller coaster there that Alex LOVED. They took one look at his shirt and asked if he wanted to ride TWICE. He looks a little grumpy in the picture, but that is because the ride was ending and he was saying “more, more!”









One of the shows that we saw while at Universal was Barney. It was a really nice show with singing and dancing, just like the show on tv. We got front row seats for it thanks to Alex and MAW. The show was all done and we started to get up to leave when one of the Universal workers came up to us and said, “please wait here for just a few moments and you will get a special surprise.” We sat back down and everyone else filed out. One of the workers waved to us to come over and out came BARNEY again, but this time just for Alex!! It was so very sweet. Out came the teary eyes again, but I still managed to focus the camera :)









Next, we saw the Grinch. I think his heart got even bigger after meeting Alex!





We spotted Spider Man doing pictures with lots of people and Alex got all excited to see him. As usual, we were ushered to the front of the very long line. Although Alex is not smiling in this picture, there is a reason why. Look at his hand. He is concentrating very, very hard on copying Spider Man’s hand, and he is doing a really good job!





Spider Man was one of the places where they have a photographer set up to take pictures. Again, amazingly all of our pictures were FREE thanks to our MAW shirts and our GKTW buttons. I was waiting for our picture to be printed when Scott tapped me on the shoulder and asked me if the picture was almost done. I asked him why and he pointed to the Universal Employee standing next to him and said “this nice lady right here asked if we would like to see ALL of the superheros!” I looked at her and said “NO WAY!” and she said “yes way, come with me!” Turns out, the Universal employee had approached Scott and asked him if Alex would like to see all the superheroes. I am sure that it was because of our shirts! She led us to this little alcove were we waited for about 2 minutes. Next thing you know we were hearing loud zooming and revving and all the superheroes were racing towards us with their four wheelers. Then, they hopped off the four wheelers and start talking and playing with Alex. It was so amazingly cool. Alex was in shock that he got to see all of them at once!







We were really sorry to say goodbye to Universal. They were so very good to Alex during his wish, it far exceeded his wildest dreams.



While we were at Universal Studios, I got an awesome crystal that has 3 d pictures of the kids inside it. The picture does not do it justice, but I just had to share. It says “Universal Studios Wish Trip 2006”





We had a magical Thanksgiving day! Alex’s wish was to see Jo Jo and Mickey and boy did his wish come true! We saw Mickey at least 5 times while we were at the Disney parks. Also, Give Kids the World arranged for us to have a meeting with Mickey and Minnie on Thanksgiving morning. . . the perfect way to start the day. They had a photographer on hand to take pictures too! They also had volunteers to take pictures and video using our camera. I just can’t say enough about how wonderful GKTW is!









When we were done visiting with Mickey and Minnie, we went outside where we were happy to find Wendy, Pluto and goofy waiting to play!





No morning would be complete without a carousel ride! Here is Alex riding on the Zebra that he named “Ah”.





We went to breakfast and Alex got a BIG surprise! All the staff prepared him a Mickey shaped pancake with a candle on it for his Birthday. They all gathered around and everyone sang him happy birthday! He was in absolute heaven with all the attention! He then blew out his own candle and everyone clapped and cheered!







After breakfast, we were off to the Magic Kingdom. We were sure that nothing could top our morning :) HA!



When we got to the Magic Kingdom, a photographer took our picture near the castle. After she took our picture, she was talking to us and she pulled something out of her pocket. She explained that she had a very special pin just for Alex. It is a Tinkerbell pin and it is not sold anywhere, it can only be given to you by a cast member. It is actually TWO identical pins, and she told us that one is to keep and one is to give away to pass on the Magic. This could happen either in the park, or once you got home. It was VERY special and Alex loved it.



We went on Pirates of the Caribbean TWICE because Alex loved it so much. He was not so sure what to think when Captain Hook made an appearance.





We spent so much time with Captain Hook that we missed Alladin and Jasmine right next door. We got there right as they were leaving. The Disney employee who was there said “wait a minute please” and then she went and got them to come back out, just for Alex!







When we went to get on Pirates of the Caribbean, we had a Disney employee take us right to a secret back entrance which brought us to the front of the line. We were chatting with the girl and she was very sweet to Alex. She mentioned how cold it was and we told her that we must have brought the weather down with us from Vermont. When we got off the ride, she was waiting for us. She said “there you are! I am so glad I caught you. Since you brought us down the cold weather, I thought that I would keep you warm with this coupon for hot chocolate!” She gave us a coupon for 5 free hot chocolates! :)

Alex absolutely loved the magic carpet ride. He wanted to go higher, and higher and fly off into the sky. It was so sweet. The girls who ran the ride let Alex ride TWICE in a row!











It’s a Small World was a huge hit with Alex. He was enthralled with all of the different scenes! He kept pointing and saying “Look! Look!”



We stayed for the fireworks and saw Tinkerbell fly down from the castle! It was the perfect ending to our Thanksgiving day.

The next day, GKTW surprised Alex with a birthday cake. It was so nice of them (and our Wish Granters for arranging it!).



Then, we were off to the Magic Kingdom again for our final day of adventures!









We watched the parade and it was so much fun! We had front row seats in a special section. The Disney worker who was monitoring access to the handicapped section was really sweet. She gave Alex a coupon for free popcorn!





While we were watching the parade, some of the characters came right up to Alex. Stitch actually came up and LICKED him :)



Later that night we went to dinner at one of the fast food places in The Magic Kingdom called “Cosmic Ray’s”. As we were standing in line, we were approached by a Disney employee who told us that we had been chosen to be the family of the day! They got our food for us and brought us to a special table that had sparkles all over it and a big sign that said “family of the day”! Then they gave us a certificate. It was all so sweet. Do you think it might have been because of our shirts? :)



I went to pick up all of our Disney pictures at the photography store on Main street. I decided to get the CD of all of them, since there were so many! While we were waiting for the CD to be burned, Alex was charming the guy who was waiting on us. The next thing you know, he said to Alex “you really made me smile” as he was reaching into his pocket . . . you guessed it, he pulled out ANOTHER special Tinkerbell pin! What are the odds? Alex was so happy yet again. It was very special. We are still looking for recipients for the two pins that Alex is supposed to give away :)







On our way out of the park, we took the train. The conductor allowed Alex to be the assistant conductor and wear his hat. Alex was really psyched!





Alex could not have possibly asked for a more wonderful wish. We were surrounded in magic from the very moment that we found out Alex’s wish would be granted. While we were there, we were able to concentrate just on Alex and the precious kid he is, and all the fun. You have no idea how much we appreciate that.

Now, I just have to share a little story with you that gives me happy goosebumps every time I think of it. My mom was telling her boss all about our trip and how Make a Wish had done such a wonderful thing for us. Her boss is the owner of Imperial Printing in West Lebanon NH. A few minutes after she told him about it, he came back over to her and said “you know, your grandson is the second child I know that has received a wish from Make a Wish. I have decided that this Christmas, rather than sending a gift to each of our best customers, I will send them a card with a note in it telling them how much we donated to Make-A-Wish in their name.” Wow.



Love, Alex, MaryBeth, Scott, Carolee & Spencer

Sunday, November 12, 2006 7:31 PM CST

TO ALEX!!

Alex had an amazing, wonderful birthday party today. He was surrounded by so many friends and everyone had a fantastic time! I am completely wiped so I am going to just load up a bunch of pictures ;) I hope you enjoy them! I do want to share with you though that Alex blew out each and every candle on his cake, ALL BY HIMSELF. It took him 4 blows, but he DID it. Mommy almost cried.

We will be leaving for Alex’s Make A Wish trip in SEVEN days. Alex’s wish granters are coming here Tuesday night to give us all the details. I will post an update then and just add it to the top of this post. I hope everyone has a great week!

Love, MaryBeth & Alex (the birthday boy!)


























































And I have to add one of my beautiful sister in law Stacie who is being blessed with TWINS!

Sunday, October 29, 2006 7:05 AM CST

Alex is psyched. There is not a bigger Diego fan in the whole world, and just this month Diego birthday party favors went on sale. I snapped that stuff up quicker than you can blink and the invitations all went out yesterday. We are hoping for a really good turnout, like last year. I have always been a sucker for birthday parties and they are a great icebreaker between Alex and his peers. I also just saw that Diego LIVE is making the rounds. If anyone knows what the presale code is, I would be very grateful for it!



Guess what Alex is going to be for Halloween . . . DIEGO of course :)



Alex's new walker is here! It seems huge compared to the old one! His whole team is working on getting Alex to use the walker without the sling seat and with only a belly strap. He is doing excellent with that. Scott had him in it with just the strap for over two hours on Friday and he did fantastic! This is a really big deal because it can lead to Alex being able to transition in and out of the walker by HIMSELF. I can't even imagine what a difference in his life that will make. Of course, using just the strap could also lead to him falling down which he could not do before, but if we don’t take the chance. . . you know how that goes.



He sure looks like a big boy in his new walker!











We went to see Sesame Street Live, Elmo Makes Music. We had pretty good seats and Alex had a blast. He was really into it.









I would love to get tickets to Mary Poppins and spend a night in NYC but I don’t know if that will be possible this year. November is already getting full and so is December! Alex's birthday party is scheduled for November 12, then there is Alex’s WISH TRIP coming right up and then I have final exams from December 11-22. Crazy days.

Here is Alex picking some of the carrots that we planted last spring. He loved being able to pick them and then have them for dinner. Someday we will have a BIG garden, we hope.









Today, we are going to 6 flags for the last time this year. I can't wait to get Alex on the little coaster he loves so much! It is sad that the summer is over, it seemed to go so quickly, but we sure are looking forward to Alex's wish trip!



Alex has been talking so much it is just incredible. We were able to record his OWN VOICE into his wrist talker, so it is really him saying what he tells it to. That sounds kind of funny because if he can say the words, why does he need the talker? The reality is that he can not say the words if he is distracted or pressured, so he just can’t get them out in a social situation, other than at home. This makes the dynavox and wrist talker his primary means of communication at school. It is very cool that he is clear enough to record his own voice though. He is really proud of that. The wrist talker says "I can do it" "that’s mine" "excuse me" and "hello".



We have an upcoming appointment at Shriners. It is an intake appointment which means it will last for at least 4 hours. I am sure that I will update before then (November 30) but please say a couple extra prayers that they will have some thoughts to supplement Alex's current program. This is basically for an overview of what Alex is doing and Additional things they might think will help.

Please have a very happy and safe Halloween! If you have a moment, please sign the guestbook and sign your name on Alex’s friend map right above this entry. Thank you!



We had a TON of fun at 6 flags. The weather was much better than predicted and other than being a little chilly later on, it was beautiful. Here is Alex with some of the characters all dressed up for Halloween!









And here is Alex on some of the rides.









The most amazing thing happened while we were at 6 flags. . . Alex rode TWO rides ALL BY HIMSELF!! This was the very first time that he did this! His independent sitting skills have come so far. We decided to let him ride the train since it had a good, tight seatbelt and no bumps. What an accomplishment!







The only problem was that the train went around TWICE and Alex started getting a little nervous on the second go round.





He was definitely ready to get off, but that did not stop him from going on yet ANOTHER ride all by himself!





And here is a little video of him doing it!



It was a fantastic end to the summer!

Saturday, September 30, 2006 5:12 PM CDT

There is so much to share that I barely know where to begin. That will teach me to go so long between entries!

When Alex was small, he started seeing an ophthalmologist. Apparently, one of the major symptoms of Mito can be deterioration of the optic nerve. On top of that possibility, he had strabismus in both eyes. I hate to call it lazy eye, the common name for it, because it is just so misleading. Anyway, it was severe enough that they would have patched his eye if he had one that was "good" and one that was not. With both eyes having issues, they just watched it and we went back every six months. As with so many things with Alex, the doctors really did not have a prognosis.

We have been given yet another miracle. Alex's most recent visit showed virtually no strabismus. In addition, this child who we thought for a while might have major vision issues has PERFECT VISION. His optic nerve is HEALTHY with no signs of deterioration. We are so blessed. According to his ophthalmologist, Alex should only be checked once per year and after age 7 he can be checked by a regular optometrist!! This is huge, especially since the ophthalmologist is leaving Dartmouth which will leave only one other in the state of NH specializing in pediatrics. We will likely follow her to Boston for the last 2 visits.

I am sorry to say that we will also be losing Alex's beloved OT, Trish. She took a job in a clinical setting. I can't even tell you how important having Trish in our lives has been. She has been my sounding board, Alex's champion, and helped me keep my sanity on more than one occasion. Not to mention the fact that she gave me my very first special needs catalog. . . and the rest, as they say, is history. Don't get the joke? You should come look at my house! They call it the rehab house =) She has oft said that she should get a cut from the companies.

Seriously, I think Alex was about 4 months old when Trish first visited us. I was a mom without a clue. At that time, I really thought that someone would just wave a magic wand and all would be right in Alex's world. Trish helped me most when I started realizing that there was no magic wand, only elbow grease and hard work. She was one of Alex's very first signs, and one of his first loves. She went above and beyond. The following are just a couple of Trish pictures that I have culled from the archives. We love you Trish!









And here is a little video :)



Trish, we wish you the very best. You will ALWAYS be a very important member in Alex’s team!

All is moving forward with Alex's wish trip. It is my understanding that the plane tickets are all ordered. Alex is having great fun counting down the days with his stickers and calendar. We talk about Disney ALL the time. Our reservations at Give Kids The World are all set. We are so looking forward to it!

One of the reasons that I have not updated is that we recently took a trip to Long Island Sound. Last year, we formed Alex's team and walked in the Mito-What? Walk in Longmeadow, Mass. Alex's team won second prize for the most donations. We won a 4 night stay in the Admiral's quarters at Heron Harbor Suites in Southold NY. Heron Harbor Site This was just the nicest prize that we could have possibly won. The rooms were exquisite. We had a two bedroom, two bathroom suite with a full kitchen and another pull out bed in the living room. Every time we left, Alex would ask when we were going back to the "new home." The area down there is so beautiful. We toured Pindar, a large local vineyard, and came home with several bottles of wine. We spent some time at the ocean, of course, and Alex just loved it.

A huge thank you for the owners of Heron Harbor Suites for donating such a wonderful prize. Our stay was fantastic and thank you for making us feel right at home! Here are some pictures of our trip.




















Farm stand







Dino museum


Last weekend we went apple picking. We went back to Adams Apple Orchard in Burlington where they have the handicapped section. Alex had an absolute blast . . . even more fun than last year, if that is humanly possible. The trees were just packed with apples, and plenty were down low for Alex.







Today we went on a scenic train ride from Bellow’s Falls Vermont to Chester Vermont and back. It was a beautiful day and we had a fantastic time!













If you have a second, please sign Alex’s guestbook. We cherish every message. We hope that everyone has a great week!

Love, MaryBeth & Alex

Please pray for our friend Joseph who had eye surgery this past week. He is having a rough and painful recovery. Josephs Page

Thursday, September 7, 2006 8:55 PM CDT

ALEX’S WISH IS GOING TO BE GRANTED BY MAKE A WISH OF VERMONT!!


Here he is getting balloons and Mickey to let him know that he will get his wish to go to DISNEY WORLD to see Mickey!






Here is Alex and two of his wish granters






They brought him a JoJo cake!



Cake






Stickers to count the days till the trip!





We are all REALLY excited. Spencer has been riling Alex up all night shouting “where are we going” and Alex shouts back “DISNEY” LOL. Thanks for stopping by!

You are invited to join us as part of "ALEX'S TEAM in the 6th annual MITO WHAT? walk in Longmeadow, Massachusetts!!


SUNDAY, OCTOBER 8, 2006
Registration: 9:30 a.m.
Warm up: 10:45 a.m.
Race: 11:00 a.m

Last year we raised over $2,600. This year, our goal is $3,000. We know that this is going to be difficult to achieve since Scott lost his job and his co-workers were major sponsors, but with your help, we can do it! For more information on the walk, visit Mitowhat


To be reminded of how much we need a cure for this disease, visit Heartbeatsformito
(can you find Alex?).

Please shoot me an email if you are interested in walking or donating! Thank you!

If you have a chance, please sign the guestbook. Also, if you would like to be one of the first to know when Alex’s site is updated, please sign up in the box right above this entry. Have a great week!

Sunday, August 27, 2006 12:48 AM CDT

What a wonderful summer this has been! Busy, but wonderful. Alex came through botox with flying colors. It started working the very next day. He is just such an amazing little boy. It was great to watch him wake up after the day after botox and see him stretch both hands way up over his head :) He is using the right hand again too.

We were lucky enough to be invited by Make a Wish to an airshow in Burlington. We all had a great time. We had special seats just for us and MAW bussed us to and from the airshow where we watched the Thunderbirds. We also got to meet some of the pilots afterwards, and then go and see some planes up close and personal.

Here is Alex with both hands up.



Alex, Scott and CHAMP



Here is Alex receiving a very special pin just for Make-A-Wish kids which was given by a representative of the commanding officer of the Thunderbirds.



Here is Alex being a goof ball with pin



Carolee and Spencer received pins as well.



We bought Alex a Thunderbirds hat.



Parachute



The following are short video clips of parts of the show. Just click on them and it should work. Look at this, one of the planes is upside down.



Here they are in their signature formation, the same as on Alex’s pin.



Here, the planes flip.


Here is one of the pilots we met after the show.



Up close to plane



Plane



Everything else is going well too. Carolee left for college on Friday. Alex was really sad to leave her there. Here is a picture of Carolee and Alex at the huge rock in the middle of campus. One of the orientation events that Carolee signed up for is to repaint the rock.


Here she is in her TINY dorm room.



She was happy she got there first so she could get bottom bunk!



Now that my orientation is over (I was orientation committee co-chair) I am hoping that things calm down enough for me to sign guestbooks. School starts for me on Monday. I can barely believe that I am in my final year of law school.

Don’t forget. . .

You are invited to join us as part of "ALEX'S TEAM in the 6th annual MITO WHAT? walk in Longmeadow, Massachusetts!!


SUNDAY, OCTOBER 8, 2006
Registration: 9:30 a.m.
Warm up: 10:45 a.m.
Race: 11:00 a.m

Last year we raised over $2,600. This year, our goal is $3,000. We know that this is going to be difficult to achieve since Scott lost his job and his co-workers were major sponsors, but with your help, we can do it! For more information on the walk, visit Mitowhat


To be reminded of how much we need a cure for this disease, visit Heartbeatsformito
(can you find Alex?).

Please shoot me an email if you are interested in walking or donating! Thank you!

If you have a chance, please sign the guestbook. Also, if you would like to be one of the first to know when Alex’s site is updated, please sign up in the box right above this entry. Have a great week!

Love, Alex and MaryBeth

Sunday, August 6, 2006 7:16 PM CDT

Summer is just flying by. We spent yesterday at six flags and Alex got to go on 11 rides. He went on the kiddie roller coaster 4 different times and he laughed with joy each time. I have to tell you that for a kiddie roller coaster, this thing is pretty intense! We sat in the very last seat each time and got whipped around pretty good. Alex kept saying “MORE, MORE!” It was so cute. . . probably why he got to go on 4 times :)

His speech is absolutely amazing. “Where are we going?” “Where are we?” “What is that?” We are so blessed that Alex can now ask us things. I think of him stuck in a silent world, with no way to tell us what he wants or what he wants to know, and I just shudder. Last night we were on our way back from six flags and Alex was watching blues clues on TV and he said “EWWW Steve, Joe’s better!” It was so funny. Many of you with little kids will understand that right off, but for those of you that don’t, Steve is the old host of blues clues and Joe is the new one.

Alex’s Dafos are in. They fit him MUCH better. They are green with blue Velcro. This time, Alex got sneakers made especially to fit dafos. I was VERY pleasantly surprised at how much like name brand sneakers these are. They even have lights in the sole that come on when you put your foot down. Alex LOVES them. The shoes are called Answer 2. If you want to see how cool they look, click here Shoes
There are even pink ones for girls! We are really happy with them.

Alex will be having botox on Thursday, so we would really appreciate your prayers. Anesthesia etc. is always scary, no matter how many times you have been through it.

Alex has been swimming like a fish all summer. Here are a couple of shots of him in the pool. This ring has been absolutely great. It is just the right size so he feels secure. He swims all over in it. I just ordered him a swim belt like the one he uses at swim therapy too.





Here he is riding Holly BACKWARDS. I just thought that Alex’s expression was really funny in this one!



We just found out the details of the Mito What? Walk this year.

You are invited to join us as part of "ALEX'S TEAM in the 6th annual MITO WHAT? walk in Longmeadow, Massachusetts!!


SUNDAY, OCTOBER 8, 2006
Registration: 9:30 a.m.
Warm up: 10:45 a.m.
Race: 11:00 a.m

Last year we raised over $2,600. This year, our goal is $3,000. We know that this is going to be difficult to achieve since Scott lost his job and his co-workers were major sponsors, but with your help, we can do it! For more information on the walk, visit Mitowhat


To be reminded of how much we need a cure for this disease, visit Heartbeatsformito
(can you find Alex?).

Please shoot me an email if you are interested in walking or donating! Thank you!

If you have a chance, please sign the guestbook. Also, if you would like to be one of the first to know when Alex’s site is updated, please sign up in the box right above this entry. Have a great week!

Love, Alex and MaryBeth

Sunday, July 9, 2006 5:17 PM CDT

Thursday, July 13

We got to meet Alex’s wish granters tonight! They made Alex, and all of us, feel really special. I wanted to share some pictures that I took. I could not decide which of the next two to post, so I will just post them both :)

Karen, Annie & Pam





Alex shared his wish by using his Dynavox and boy was it sweet. And he wished (drumroll please!) to go see Mickey Mouse and JoJo from JoJo’s circus! He was a little shy at first, but he warmed up very quickly, especially when he got to play with the Scooby Doo basketball that Karen, Annie & Pam brought him. He was playing all shy and Pam said “so Alex, do you like presents?” and boy did his head pop up fast! They also brought him a Diago video which he wanted to watch the minute that they left. They also made Carolee and Spencer feel very special. Here is Spencer with his C.D. and he got Red Sox Uno too.



Here is Carolee with her necklace. It is very cute and just her style. She also got a paint set.



As you can see here, Alex warmed up pretty quickly. Here he is snuggling with Annie! Does he look like he is in heaven with THREE girls giving him lots of attention or what?



I will keep everyone posted when we find out whether Alex’s wish will be granted :) Have a great weekend!

Alex & MaryBeth


Thank you for being patient with me. So much has happened in the past few weeks that I don't even know where to start. Alex is doing just wonderful, which is just amazing!

We were very, very excited to learn that Make-A-Wish has decided to allow Alex a wish!! Alex’s doctor sent them the information saying that Alex is eligible and the wish granters are coming to our house, possibly THIS Thursday!! It is very exciting and we will keep you posted!

Many of you prayed for Alex’s first personal care attendant, Jessica, when she was having trouble with her pregnancy. She had miscarried twice and it looked like she was losing this pregnancy too. Well, Jessica delivered a beautiful and healthy baby GIRL!! She named her Alexis. Thank you all from the bottom of our hearts for your prayers. They worked wonders for Jessica and her little family!



Many of you have also prayed for my friend Tracey who was diagnosed with stage 4 lung cancer over a year ago. Recently it was determined that she also has two tumors in her brain. Tracey is feeling really good, and she is fighting cancer with amazing strength and determination. Yesterday, I had the privilege of walking 10K in the "Prouty" with Tracey and her son Allan and Alex. This is a HUGE one day event which raised over 1.2 MILLION dollars for cancer research. Please, keep those prayers pouring over Tracey and her family, and I promise to keep you updated on how she is doing.

Prouty start.



Tracey and I at the finish



Tracey and Allan at the finish.



Tracey and Allan



Alex just got casted for new DAFOs. They should be done in 3-4 weeks. His little toes are going right over the old ones. I have never taken pictures of Alex being casted, so I thought it would be neat to do it this time.

Here is Alex with his “socks” on.



The caster draws where all bony protrusions are to help the molders get the DAFOs right.


Cuteness



Here is the actual casting.



The saw is really loud (you can see I am covering Alex’s ears) but Alex was not scared at all. He is an old pro!





We had a really great time on the 3rd of July at Suzy's house on lake Champlain. It was a day of good company, good food and fireworks. Here is Scott's mom Geri and cousin Rita.



Here is one of Alex playing with his cousins



Alex and Zack and Sissy snuggling



Sadly, Rita's (see above) husband Don passed away this week after a long illness.

Some web angels have made Alex a quilt of love :) You can see it by clicking Quilt of Love It is really quite special and we thank them from the bottom of our heart for their hard work!

Next week we will be heading to Boston to see if Alex is ready for more botox. Fortunately, we got our insurance back despite Scott’s job loss!! It is an incredibly long story, but we will have private insurance for the next 18 months at least. Yet another blessing.

As always, thank you so much for praying for Alex. His progress is absolutely amazing and we know why.

Love, MaryBeth & Alex

Monday, June 19, 2006 8:19 PM CDT

What a weekend! I can’t believe that my baby is now a high school graduate. She keeps holding up her diploma and saying “Mom, look what I’ve got!” I am so proud, I could pop.

We got wonderful weather on Friday night for the graduation and the party. The graduation was a bit hot, but not too bad. I may have been hot just because I could not sit down for a second before it started. Nervous energy I guess. It is not every day that your little girl graduates.

Alex and Spencer gave Carolee her diploma and she gave them each a flower. I took a little video of it so that I could share it with you. I took the video in two parts because I was afraid that it would be too big to upload. When Alex and Spencer started walking up, people started clapping for them! This did not happen for any other diploma presenter. I swear, there was not a dry eye in the house. Well, see for yourself.





Wow, I teared up just watching it again. She made use extremely proud when she got THREE scholarships. They were announced for the first time at graduation, and I swear, I deafened the poor people in front of me with my screaming and hollering. LOL.

Here is a picture of my graduate :)



Carolee and Spencer (Spencer has a rose on because he was an usher)


My future valedictorian



Carolee’s cake. The picture on the left is her preschool graduation.



We went to Six Flags on Sunday and finally activated our season pass. We were really happy to see that they have more rides that Alex can do. He did eight, right off the bat. He kept saying “MORE, MORE” after every one.

Alex and Daddy with Bugs



Copter



Video of Alex and Scott on bumblebee.



Last, but not least, here is a video of Alex on his slide. He was having a blast.



Thank you for all of your kind thoughts and prayers. They are making such a difference in all of our lives. Have a great week!

Love, MaryBeth & Alex

Tuesday, June 6, 2006 8:24 PM CDT

I have a good excuse for not posting in over a week. . . I swear! Actually, I have several ;) Things around here have been absolutely crazy, but in a good way praise God! We were so blessed in May that our feet are still in the clouds. In addition to those things mentioned in previous entries, I GOT A SUMMER INTERNSHIP! Paid even :) I started on Monday and things seem to be going really well. I am working for Blue Cross and Blue Shield of Vermont in their legal department. It is a new area of law for me since I have mostly done litigation in the past, but who knows where it could lead. It is a whole 15 minutes from my house. My heart is breaking not having to make the 3 hour (each way!) commute to school this summer, but I will get over it!

Now on to Mr. Alex; He is absolutely amazing. He is talking more and more every day. Today, he looked at my feet and said "Mom, green shoes" just as clear as day. We had been walking through fresh cut grass. He COMMENTS on everything. "Mom, look, mooooon" "Alex helping." I truly didn't notice how much he didn’t comment, till he started to. The difference is amazing and he is SO proud of himself.

Here are a few shots of Alex in his pool. He loves the water.





We got a new porch swing and Alex insists on being in it every day. So does Jake :)



Alex has also had a great time running through the water! So much summer fun!






Here is a short video of Alex running through the sprinkler (actually it is Mom spraying the hose in the air)



If you want to see some of the other videos in our collection just click the link below. We have some really fantastic ones even though they are all short.

http://smacs.zippyvideos.com/gallery.z

Carolee had her last band concert ever the other night. I teared up half way through it, thinking about it. I can’t believe she graduates this year. When we were at the concert, Alex insisted on standing up and holding on to the chair in front of us. He must have done that for 45 minutes! He has gotten so strong, it is truly a miracle!



I hope you don't mind me sharing a few pictures of my beautiful daughter Carolee all dressed up for the prom.



Carolee and Zack.



I just can't believe how old she is (which makes ME older than DIRT!) She graduates on June 16th. Our school is so small, it only has 43 kids graduating. Each senior gets to choose who they want to give them their diploma. Carolee chose Spencer and Alex. I got them matching shirts, ties, shoes, and pants. Spencer will hold on to Alex's gait belt to help him walk across the stage. I am tearing up just thinking of it. I am going to bawl, I just know it.

Thank you so much for continuing to visit Alex and especially for praying for him. He is an amazing kid and we are incredibly blessed. If you could take a second and sign his guestbook, we would appreciate it. Alex has 146 friends on his map!! His map is a little above this entry. If you have not added yourself as a friend, please do. 146 is A LOT of friends, but he can always use one more :)

Love, MaryBeth & Alex

I will be doing the Prouty walk in honor of my friend Tracey and all kids with cancer. The Prouty is Norris Cotton Cancer Center's (out of Dartmouth) largest fundraiser. All monies support world class research, state of the art equipment, and innovative clinical trials that affect patient treatments all over the world. If you would like to sponsor me, the following link is set up by the fundraiser. All check donations should be sent to them via their instructions. We appreciate every single tax deductible penny.

MaryBeths Prouty Donation Page

Friday, May 26, 2006 12:35 AM CDT

FANTASTIC NEWS!! We got Alex’s MRI/MRS results back today and we could not have asked for a better result! Not only is there no indication of disease progression/new lesions/atrophy, the results actually showed that Alex’s brain is working more efficiently at a cellular level than it was at his last test when he was 6 months old. Apparently, his brain cells contain more N.A.A. than they did at the last test, which indicates that his brain is “healthier” than it was. Not that it was bad at the last test, it is just BETTER now :)



Interestingly, we did find out that Alex’s calcium and vitamin D are low, so we will begin supplementing those. If anyone knows of an over the counter supplement that would work for a 4 year old (either liquid or chewable) let me know.

In addition to the above wonderful results, the test also showed no lactic acid peak in the brain. A lactic acid peak (which Alex had in his first MRI/MRS at birth) indicates cellular dysfunction i.e. possible mitochondrial disease. There was also no lactic acid peak at the 6 month MRI (which, by the way, I had forgotten he ever had!) so the continuation of those good results is a huge blessing.

I must tell you how much we appreciate all of your prayers. They truly mean the world to us and we know that they have benefited Alex in ways beyond our comprehension. Thank you.

Now on to other news! Alex is doing some pretty amazing things. We had his front walker wheels locked in the forward position, rather than allowing them to swivel, to make it easier for him. He has now had them unlocked for a couple of weeks and is doing AMAZINGLY well. At first, he was all over the place, kind of like a little drunken sailor, weaving out of control, but after a couple of days he was able to control his body and keep the walker steady! It is a huge accomplishment.

I can’t believe how much that I took for granted before Alex was born. Each milestone for our other two children was celebrated, but it was just assumed that the next one would come. With Alex, I am now aware of just how many muscles are involved to sit, to rise from that position, to stand, to grasp a crayon, to feed yourself. I am so amazed when he masters his body to do one of those things. To balance himself and his walker on swivel wheels is a huge accomplishment as is feeding himself the majority of his meals. We are so blessed.

At Alex's last PT appointment, Sarah actually had Alex in his walker with NO HARNESS. The wheels were not locked and he was kicking a ball. This is HUGE. Alex has come so far. If you look at the picture at the top of this page, his arm is velcroed in to one side of the walker because he could not hold on well. Now that is gone and he holds on very well. You can also see, the sling seat/harness that helps make sure he does not fall. With some work, maybe that will be gone as well :)

For those of you who have prayed for my friend Tracey who has stage 4 lung cancer, those prayers have been answered. Her insurance APPROVED the PET scan that allowed her to be considered for the study. She was ACCEPTED into the study and has already begun the protocol. Please pray that it works and that her body is freed of the cancer beast.

Thank you so much for your thoughts, prayers and supportive guestbook entries. We truly appreciate it. Also, right above this journal is a place to enter your email if you would like to receive notification when Alex’s page gets updated. Right above that is a link to Alex’s map. You can put your pin in his map so that he can see where all of his friends are. Thank you!

Love, Alex & MaryBeth

Thursday, May 18, 2006 4:33 PM CDT

Thank you for the prayers! Alex’s MRI went very well, although he took a LONG time to wake up which is pretty standard for him. Because of the mitochondrial disease, Alex cannot have gas for anesthesia and therefore he must have an IV. Evidently, gas has lead to some deaths for mito patients. Because Alex must have an IV, they give him a sedative orally to make the IV placement less traumatic for him. This makes it harder for him to wake up than most “gassed” kids. :) It took well over an hour, but he was just fine. They did another lamictal level on him and fortunately they did the blood draw while he was under so he did not have to endure yet another poke.

Here is Alex a few minutes ago playing on his computer.



We do not have the results yet, but were told that the doctor would call us tonight. This means that I will start hounding them in the morning and will hear from the dr sometime early next week, LOL. Isn’t that always the way it goes? I will post results here as soon as we get them. I will admit that I am really nervous. Any atrophy indicates that the mitochondrial diagnosis is correct, not to mention having many more negative implications. I am praying so hard that this test just shows that the status quo has been maintained.

Here is Alex’s school pictures that we just got back on Wednesday. Isn’t he cute? I don’t know why they take them twice a year now, they never did when Carolee and Spencer were little, but you know this sucker will buy anything with Alex’s picture on it!



Thank you so much for checking on Alex and for praying for him. It means a great deal to us. If you get a chance, please sign his guestbook. We love to read him all the entries. Right above this journal is a place to enter your email if you would like to receive notification when Alex’s page gets updated. Thank you!

Love, MaryBeth & Alex

EXCITING NEWS!! Many of you have been praying for Scott's job situation since his company closed after he had been working there for 21 years. Thank you for all of those prayers. We were just notified that the TAA benefits (training benefits for those who lost their jobs due to overseas competition) which were originally DENIED have now been APPROVED on appeal! That means that Scott will have college paid for for the next two years and will be able to collect unemployment during that entire time. This is the answer to a prayer!! It is so wonderful not to have this incredible stressor in my final year of law school! We are very excited.

Monday, May 15, 2006 1:01 PM CDT

Right above this entry is a “notify list” box. If you enter your email address in the box, you will be notified via email every time I update Alex’s site. Quite a few people have already signed up :) and I would love to see your email added to the list!



I got breakfast in bed yesterday morning! Alex was happy to share my blueberry pancakes, bacon & eggs, so I guess you can say that we BOTH got breakfast in bed! He loved it, and so did I. Carolee bought me some gardening tools, seeds, and a gift certificate with her very own money. That was pretty cool :) Spencer and Alex got me a gift certificate as well. I will be all set for annuals. I just love flowers.



Alex is doing wonderfully well. We have both had a summer cold for the last few days, but both of us are feeling much better. Alex is saying so many things now. He is truly amazing. Some of the clearest are . . . “right now, right now,” “go AWAY brabra,” “hurry up,” “I love you,” “ewwwww,” “stinky poo poo head,” plus lots and lots of words. A few days ago, he was shaking his cup saying “EMPTY”. So amazing. Of course, most of these are not the greatest, but very typical 4 year old lol. I am not even going to mention how much we have to watch OUR mouths now. With the little parrot around, anything is fair game!



Alex is feeding himself 50-75% of each meal now and he is SO proud of himself. We are pretty proud too. We do a lot more laundry now though :) He will not wear a bib, and I can’t blame him. We just change shirts.



Please pray for Alex on Thursday. He has an MRI scheduled for first thing in the morning. We are praying for no atrophy and no lesions and nothing else weird. We want the exact same brain (just bigger) as the MRI showed at his last MRI which was shortly after Alex was born. Of course, Alex will be anesthetized, so there is that worry too. Please pray for a successful, stress free procedure. The stress free part might be stretching it a bit, I think it might not be possible :)



Here is Alex being a Cool dude in our van.



Look at him, he can eat his bunny all by himself! Can you believe we still have Easter candy at our house?



He can make a mess too!



Daddy covered Alex in stuffed animals and he thought it was funny.



I will hopefully be having breakfast on Wednesday with my friend Tracey. I will add an update then. Thank you to all who continue to pray for her.



Alex just loved being the card-send kid for Angels On Earth (AOE). They have made his last two weeks VERY special. In addition to the cards that he got last time I updated, he also got all of these!



Is it any wonder why he gets so happy when we say that he has mail? Thank you very much to those Angels on Earth for being. . . Angels :)



Love, MaryBeth & Alex

Friday, April 28, 2006 6:59 PM CDT

Hello! Thanks for visiting us. I discovered an interesting new feature that I added to this website. Right above this entry is a “notify list” box. If you enter your email address in the box, you will be notified via email every time I update. I have already signed up for a few that I have seen on other sites and I have not received any spam, which is the only thing I was afraid of. You can be removed at any time by just letting me know. I hope this is helpful!

We have had a fantastic couple of weeks although Alex got another tummy bug. This one only lasted 24 hours, thank God. Here are some pictures of Alex’s Easter morning egg hunt.

We went to Nanny and Bampa’s for dinner. Here are Alex and Uncle Geoffrie being silly. . . er . . . I mean COOL with their thumbs up!

After dinner, we went outside and blew bubbles with Alex’s new bubble blower. Look closely, it blows bubbles INSIDE of the bubbles. He had such fun. I wish you could see more of his face, it shows such joy.

Amazingly, Alex has been feeding himself more and more. The other night he fed himself his entire dinner of spaghetti! He was quite a mess, but VERY proud of himself. Here he is being silly.

Then he ate breakfast almost all by himself. He is really giving his arm quite a workout. This is such a huge milestone for him!

Here is my little guy playing on his computer. Look at how long his hair is! You can see that I cut it last night in the next pictures.



We need to thank some very special friends of ours. The great people over at the Angels on Earth website picked ALEX to be their card-send kid of the week. He got TWO cards today. He got SOOO excited when I told him that he had mail! Here he is opening one of his cards.

Here he is and you can see how happy he is! The minute he opened the horse one he said “HOLLY!” That is the horse that he rides at hippo therapy! He also loved the little teddy bear with the flower. Thank you so much to the Webers and Tina & Lance. You made my little boys day!

Alex’s blood work came back with an extremely low lamictal level, which I expected. I only had to “discuss” the issue with Dr. F’s assistant for a little while before we determined an increase schedule. He will get it checked again when he goes for his MRI on May 18th. I bet he has to have a further increase. He is talking up a storm now and SINGING. So much is understandable now. I tell you; sometimes the tears just flow when I think about how blessed we are. I have wanted to put a video of him singing on here, but the only problem is that he sings best when someone is singing WITH him. I have been trying to spare you all the pain of hearing one of us sing

A good friend of mine, Tracey Clark, was diagnosed a year ago with stage 4 lung cancer. She was not “supposed” to make it a year, but she has. This week she found out that for the second time her chemotherapy course has failed. Her cancer is growing and has spread to her other lung. She may be able to get into a clinical trial, her best option at this point, but in order to do so she needs her insurance to approve a PET scan which costs somewhere between 8-10 thousand. Please pray for Tracey and that her insurance approves this quickly. She is just the most amazing woman. Despite all this “stuff” she has continued working and studying the law. She plans on taking the bar exam next year a little before me (she is a tad competitive!). We appreciate the heaven storm that we know happens every time we ask all of our friends for prayers! Thanks so much for checking up on Alex!

Love, MaryBeth & Alex

Saturday, April 15, 2006 3:29 PM CDT

Where has the time gone? The last time I checked in, Alex was just getting over being sick. Thankfully, he stayed well after that post and has been feeling like his old happy self. He has been doing really well in all of his therapies and we are very happy with his progress. Here is a video of him playing soccer in the driveway with his aid Rebeckah.





Last night we went to KFC and Alex was SO proud that he was feeding himself his chicken strips. He kept saying "mama, mama" and pointing to his mouth, and then he would turn to Scott with an open mouth so Scott could see that there was something in it. It was so cute. This morning Alex was feeding himself cereal with the talking bowl that Nanny and Bampa bought him for Christmas. It is shaped like a dog and BARKS every time the spoon goes into it. Talk about positive reinforcement!

Last weekend Scott and I actually had a chance to go away. We went to the Barristers Ball which is put on by the student bar association at my law school. We stayed overnight at the Marriott right next door to where the ball was. We had a wonderful time. Because I go to school so far away, Scott had never met many of my school friends. This was a great chance for him to meet many of them. My mom and dad watched the kids for the weekend. I swear, we need a moving van to pack all of Alex's stuff up! Things went just fine though and it was a nice, relaxing weekend.

Here is a video of Alex making baskets at Nanny and Bampa's.



Here is Alex playing in the sand with his trucks!





Last night Alex had blood drawn for a lamictal level. He was not impressed. They had to poke him twice. I was not impressed either. They are allowed two pokes. If they don't get what they need, we come back another day. My kid is not a pincushion! Obviously, if there were an emergency it would be different, but I don't want Alex to develop a huge fear of blood draws. I was also a little disconcerted because I had to argue with the nurse in Dr. Filiano's office about the blood drawing.



Back when Alex had his EEG, Dr. Filiano increased his meds. He wanted a level done after the increase, then again when he has his MRI. I never got a letter for an MRI appointment so I called to remind them that one needed to be set up. I also asked for a lab slip so that Alex could do the first blood draw. Well Dr. F's assistant did not think it was necessary. She said that they only check the level to make sure that the level is not too high and Alex's was really low. She said we could just check it at the MRI. I had to go through the whole thing about seizure activity and that Alex was to have another increase if the level is still low blah blah blah. I am not dealing with him being under medicated any more! We have to get the levels up so that Alex can have restful sleep instead of seizures. He is sleeping MUCH better since the increase, but he is still waking up occasionally.

This woman has never impressed me. Half the time she does not know what she is talking about and I have to bite my tongue. I LOVE dr. F, which is why we keep going there, but I dread appointments with her or just dealing with her.



Anyway, enough whining. Alex has an MRI scheduled for May 18th. We will be asking for prayers for that procedure as it gets closer. Alex has not had an MRI since his initial hospital stay at birth. I am nervous and I hate it that he has to be put under anesthesia yet again.

I almost forgot to tell you about Alex's new wrist talker. If anyone has a child with serious speech issues this new device works FANTASTIC. It is a great supplement to a more complex system, like the Dynavox. Here is a video of him showing it off.





I would like to send out a HUGE thank you to Ann Eide for sending Alex happy mail! Here he is playing with the new powertouch game that Ann sent for him. This was just one of many special things! Thanks Ann!



Ann started a wonderful website for kids who have mitochondrial disease. Alex has his picture there. It can be found here. Heartbeats for Mito

Another HUGE thank you goes out to Alex’s friend Pam. She sent him happy Easter mail :) He loved everything, especially the new game for the computer and the dinosaur fizzy egg. Thanks Pam!!

We hope that everyone has a wonderful weekend.



Love, MaryBeth & Alex

Tuesday, March 28, 2006 6:24 AM CST

I know it is a little early, but I am in a SPRING mood! I am celebrating Alex feeling better.

Alex was really ill with a stomach bug. My poor little baby was vomiting for days. Three times, he vomited his seizure meds. Twice we gave them again after waiting a bit. Thankfully he kept them down the second times.



The first time that Alex threw up, he was sleeping on my chest while I was reclining on the couch. There was no warning, and he began throwing up while he was sleeping. That freaked me out more than anything. Later that night, Scott heard him coughing and ran in to check on him. He had been placed in his bed on his tummy but had rolled onto his back. Scott flipped him over and he vomited all over. The coughs were him choking on what was coming up. I got a little tiny glimpse of what many families deal with on a daily basis, the overwhelming fear of aspiration.



He felt good enough on Thursday to go to school and kept everything down for a whole day. Then Friday, it started up again! The weekend went very well and he was in good enough spirits to go horseback riding. He is still not eating as well as he was, but hopefully he is on the mend!



OK, enough about vomit! The botox is working really well. We have Alex doing so many new exercises to strengthen his arms and get to know the muscles in his hands. Here are some of the new things that he is doing.



No, not juggling like this bunny lol, although his OT Trish may one day have him there! This is one of Alex reaching up while in his creepster crawler. This uses a lot of shoulder/back muscles that usually are not used.





Same muscles used in this video where Alex is hitting the ball. Any of the smaller pictures like this are videos. Just click on them and they should play.





Alex is getting Mommy while in his creepster. His legs are not touching the floor, so he has to use just his hands to pull himself along. He thinks it is a blast!





Alex being a brat on his parallel bars. He can sign lolly pop!



Here is Alex finishing up on his parallel bars. He can say lolly pop too!



Nothing like a little treat for such a hard worker!





It was warm enough to get Alex’s power chair out the other day and boy did he have a blast!



If you want to see more videos that we have uploaded of Alex in the past, just go to http://smacs.zippyvideos.com/gallery.z and you can veiw them at your leisure.

I am hoping to be signing guestbooks within the next couple days. With the end of my semester drawing near (only 4 more weeks!) the work is piling on. Papers due and presentations due, everyone being sick, and applying for every job in sight . . . please know that we check up on all of our CB friends regularly, I just don’t always sign in.



Spring is in the air here and it is supposed to be sunny and in the 50’s this week! I can’t wait to get Alex out on his bike and on the trampoline and everything else that summer brings with it! I am ready to see some FLOWERS



We hope that you have a fantastic week! Thank you for praying for Alex!

Sunday, March 19, 2006 9:37 AM CST

The botox has already had some wonderful effects on Alex. His arm is so much less tense. He no longer has to have his arm velcroed on to his walker; he can grip and release all by himself! If he can maintain this, we are one step closer to getting rid of the sling seat in the walker!

Alex is now having OT twice a week to try to take advantage of the effects of the botox. He has many new exercises and the creepster crawler and parallel bars are getting a workout.



We have increased Alex’s lamictal and he has had a couple of nights where he slept right through the night! We never knew that this was related to seizure activity. With the increased lamictal came an increase in verbalization again.

I can’t tell you how amazing it is to hear Alex talk. The other day, we were sitting on the couch and he said “eye brow” plain as day while pointing to my eye brow. Of all the things to say LOL. Yesterday, he had me in tears. I said “I love you more” and he said “love YOU more” back and forth and back and forth. It was so sweet. I always played those types of little games with Carolee and Spencer, and boy am I blessed to be able to play them with Alex too!

Yesterday, Carolee had her one act play. It was FANTASTIC, but Scott had to take Alex out. There was this one part where a guy throws a chair and Alex just freaked out. Poor kid. We did not think it would be a problem because we saw the dress rehearsal on Thursday and Alex was fine with it. Not this time though! Carolee made us all proud and came home with the best actress award.

Can you believe that Alex’s map has 108 friends it and 54 photos. The photos scroll across the screen above this entry. We just LOVE to see where all of our friends are and I would encourage anyone to get a frappr map so we can sign yours! If you have not put your pin in Alex’s map, we hope you do. Adding pictures is easy too, so feel free to do that as well. We love hearing from you in our guestbook, and thank your from the bottom of our hearts for praying for Alex.

Love MaryBeth & Alex

Sunday, March 5, 2006 10:35 AM CST

UPDATE THURSDAY March 9 3:32

Alex came through the procedure with flying colors!!! He did not even scream when he was waking up from anesthesia, which is great. Now it will just be a couple days (4-7) before the botox starts to work. Alex will start having OT twice a week now, to try to get the full benefit out of the botox. We will have him doing push-ups in his new creepster crawler in no time :)

This has been such a busy and emotionally exhausting week. I don't know how some of our friends do it. Our friend Joseph has multiple appointments almost every week. My hat is OFF to his Mommy. I feel like sleeping right now, but I have class tonight.

I got offered a job today by the Social Security administration and I had to turn it down. They wanted me to start March 20 and I am in school until May 1. It was a position that I really wanted/needed too, so I am really disapointed. Well, at least this tells me that I can get one, right?

Thanks for checking on Alex!! As soon as I have a date for his MRI, I will post it. Have a great weekend!

Love, MaryBeth & Alex

UPDATE TUESDAY March 7 7:59 PM

First, I want to thank each and every one of you for praying for Alex today. There was a moment at the hospital where I truly felt your prayers wash over us, and it was very comforting.

Right now, I am feeling a bit battered after such a long day at the hospital. Alex was so good when they were putting the electrodes on his head. I was so proud of what a good boy he was. After a few quiet stories and some singing by mommy, he finally snuggled close to me and drifted off to sleep. The person administering the test let him sleep "a little longer" than the test called for, since he was already asleep.

My jaw just about hit the floor when our neurologist told us that Alex had a seizure during the EEG. Actually, my jaw didn't hit the floor, but my heart sure did. Alex did not just have one seizure though, he had two. The first one lasted ten seconds and the second one lasted two and a half minutes. . . the most disturbing thing about this is that the entire time my baby was asleep, I was gazing into his face which was serene and untroubled. The tester noted "no outward manifestation of seizure activity." Obviously she knew, and that is the real reason she let him sleep longer.

So, we want to thank you for your prayers again. Exactly what we wanted to happen, happened. Alex manifested what he was going through DURING THE TEST so that he can be treated for it. Other than the two seizures, the EEG actually looked better than his previous one. This means that while his neuro would have likely increased his meds some, he probably would not increase as much as he needs to, so we are blessed that the seizures reared their ugly head. My poor baby :(

Anyway, we also had a long discussion about mitochondrial disease. Dr. Filiano said, "skin biopsies are notoriously unrealiable and we should all keep in mind that the mitochondrial disease is a tentative diagnosis. Alex is actually doing better in a lot of respects and that is not what we would expect from a mitochondrial disease diagnosis, particularly complex 5 so as time goes on, you may want to think about a muscle biopsy to know for sure."

We then got into a discussion about muscle biopsies and how Dr. Filiano really recommends that we get a second opinion.

I would give my very life to make it so that Alex does not have a mitochondrial disease, so would Scott. A massive stroke is enough for any little boy without adding mito into the mix. Let me tell you though, we are NOT getting our hopes up. We don't even want a muscle biopsy, or even a second opinion right now. We are thankful beyond words just for today and the wonderful progress that Alex has made. We are especially thankful for you, who pray for Alex, worry about him and check up on him.

So, the plan is to increase lamictal at night starting with a 5 mg increase this week, then a 5 mg increase next. Then, we get a blood level done and an MRI. The MRI is just to make sure that there is no apparent disease of the brain from Mito. I am not going to say that I don't think there is, because I already jinxed myself by saying I did not think there were seizures. NO ATROPHY, that is what we will be praying for. I will update again after botox on Thursday.

Love MaryBeth & Alex

Sunday, March 5, 2006

This week is going to be a busy one. We ask for your prayers please, for the testing and procedures that Alex will undergo this week. On Tuesday, February 7, Alex has a sleep deprived EEG. These are never fun. Please pray that the test is an accurate depiction of what is going on with Alex. I don’t think that there is any increased seizure activity, but if there is, I pray the doctor finds it so that he can increase Alex’s lamictal dose accordingly.

Fortunately, we have an appointment with Alex’s neurologist, Dr. Filiano, shortly after the EEG so we won't have to wait for results. We will know that day. We will likely stop in to the NICU for a moment to say hello and to have Alex's picture put up on what I call the "wall of hope." When Alex was in the NICU for 14 days at birth, we would look at the wall of NICU "graduate" pictures every day and see just how many kiddo's made it home. It was so comforting to know that others had walked the same journey that we were and had made it home. They have a camera at the desk and take the "graduate's" picture and hang it up.



On Thursday, we will be at Boston Children's Hospital where Alex will have the long awaited Botox and phenol injections. Alex has to have special precautions taken with the anesthesia due to the Mito diagnosis, and we are always very nervous about the recovery room stuff. This time, Dr. Nimec is really going to concentrate on Alex's right arm, and the rest will likely go into the hamstrings and hip area.



Scott and I built the Creepster Crawler so that Alex can get some arm exercise to strengthen his arms after the Botox. We just finished it yesterday. All told, it cost less than $100 to make and is extremely sturdy. To purchase one is between 5 and 6 hundred dollars. I was a little worried before we made it that the PVC would not be sturdy enough but it does not even bow at all when he is in it. Alex was playing around in it yesterday and he loves it!







Alex has a girlfriend and he gets all goofy every time that she is near! Her name is Catherine, and she has a water therapy appointment right after Alex's. She gets pretty goofy and giggly too! Catherine's mom took this adorable picture of Alex, Catherine and Sarah.



Seeing Catherine's progress has been inspirational to us. She has issues similar to Alex, but is less affected. When we first met her, she was not walking and then we saw her slowly but surely progress to a walker and a DANCER!!! She stunned her family by doing every move at her recital. I wish we could have seen it!





We would like to pass along the following from Angel Katelyn's site. Both Carolee and I were first time blood donors in honor of Katelyn. I think it is time to roll up our sleeve again!



Thank you all for praying for Alex. I will be doing an update on Tuesday after we get the results of the EEG and again on Friday after the Botox. I hope you all have a great week! Don’t forget to sign the guestbook.

Love, MaryBeth & Alex

Tuesday, February 28, 2006 9:35 AM CST

We had a wonderful, busy weekend in Boston! Alex had so much fun. He used his Dynavox to tell the kids in his class all about it yesterday at show and tell. His teacher said he did a really good job. I think we are all still tired though. This morning, he had a little meltdown when we got to school. He calmed down pretty quickly though. There are a whole bunch of pictures and videos that I want to share with you!

Here is Alex, all snuggled up at the hotel.



Alex and Spencer at the aquarium





Alex, captaining his own boat





Alex at the Children’s museum









Playing in the bubbles.





Vidoe of Alex and Spencer playing in the bubbles





Our construction worker





The ball area was one of Alex’s favorites!



Ball video



Al and Mom at the ball ramp



Second ball ramp video





Alex and Spencer, looking up at the turtle.



Turtle video







Water ramp video





We hope that your week is fantastic! Please take a moment and sign our guestbook, we treasure every entry!

Alex has some appointments coming right up. On March 7 he has a sleep deprived EEG. We always LOVE those (not). On March 9, he has botox and phenol injections. If you could say some prayers for Alex, we would appreciate it!

Love MaryBeth & Alex

Sunday, February 19, 2006 2:38 PM CST

Alex is such a little turkey. Mommy said “smile” but he gave her a raspberry instead!



On Wednesday, Alex got to see Dora the Explorer live! He had so much fun. We had great seats. Alex is not in the following video, but you can see how high energy the show was.





Here are Dora and her pals trying to find the treasure that the pirate piggies stole.



Alex is waving his Dora flag even after the show.



Next weekend is going to be a ton of fun too. We are going to Boston for the whole weekend! I have an American Bar Association Law Student division convention on Saturday. While I am there, Alex & Daddy and Spencer will be at the aquarium. I bet Alex is going to love it! I get out at 4:30 and plan on spending some quality time with my boys. . . shopping! Our hotel is right next to a mall :D Then, on Sunday, we are going to the Boston Childrens Museum. I bet I have lots and lots of pictures next week :D

Now for Alex’s latest achievement!!!! We are so psyched to tell you that Alex learned how to blow out a candle. This shows how much better his oral motor control is, and goes right along with his ability to say more words and become more understandable.



This second one just shows how much more quickly he can do it after a couple of practice runs





Here Alex is playing with the new toy that he got for Valentines day. He can do it all by himself!



Speaking of Valentines day, Alex got some really special mail that week. Thank you Kari for Alex’s Valentine, especially for the whistling straw. With Alex’s new blow ability, we are trying really hard to get that straw to whistle. It is a great exercise disguised as fun Kirk, thank you for Alex’s Valentine. He loved it. Joseph, thank you for Alex’s valentine and for the adorable love bug We love all of our Caringbridge friends!




Alex is working hard to try to climb up his stairs. Fortunately they are nice and soft. We hope that someday he can do it all by himself.





Please pray for our good friend Joseph. He has surgery on Monday, February 20. This little guy has been through so much already. If we could all storm heaven with prayers, I would truly appreciate it. His Mommy says “We went and had Joseph's Renal Sonogram done to find out that Joseph has Cysts and a lot of extra fluid in the Kidneys. On Monday the 20th he is going to be having 3 different surgeries. First the ENT will put in the tubes. Then the Uriologist will have to go and get the excess fluid out of the kidney.” And this is just a tiny sample of what this adorable kid has gone through. You can visit him at http://www2.caringbridge.org/fl/joseph/ and tell them Alex sent you

Here we are sprinkling magic fairy dust on Joseph and sending GOOD vibes his way!





Thank you to everyone who checks in on Alex and who prays for him. We appreciate each and every one of you. Hey, since you made it all the way to the bottom of this journal entry, feel free to click on the “guestbook” link and leave some happy thoughts!

Love, Alex & MaryBeth

Saturday, February 11, 2006 6:59 PM CST

Exciting news! Alex got a new stroller. It is SO much easier than his kidkart. It actually folds like an umbrella stroller (but heavier). No more two pieces!! YAY. Alex loves it and wanted to show it to Sissy and Brother as soon as he got up, which is why he is in his pjs in the picture! Mommy and Daddy love it too, and we feel really spoiled.





Here is Alex on his parallel bars that Scott made. I can’t wait till he gets botox as I think that he will do much better with the right arm loosened up. It is really holding him back right now. One more month. He tries SO hard though.





And here is a video of him using them.





This picture was just too precious not to post. Here is Sissy and Alex snuggling.



Alex loves his “Thinking Chair.” OK, love is a little strong, but he does tolerate it well. It helps to stretch his leg muscles out. We named it the “thinking chair” after Blue’s Clues.





Here he is playing with some of his toys.





Alex is doing really well. We are so blessed that he continues to progress. He continues to delight us with his sense of humor and intelligence. Every Monday, it is his turn to do show and tell at preschool and boy does he love that. He brings in a toy and then tells all of the kids about it with his Dynavox. It still amazes me how those kids just accepted Alex’s Dynavox with barely even a question. We really could learn a lesson from them.

Alex wants to send a BIG to Jessica. Thank you all for your continued prayers for her and her baby. They found out a little while ago that they are having a GIRL! I can’t wait to buy her something to wear. There are just so many more cute clothes for girls! Thanks to everyone’s prayers, Jessica’s pregnancy is now going very well.

Alex also wants to wish a to Trish. He said that she is the best OT in the whole world! I happen to agree!





Here is snoopy bringing you a valentine from Alex and I!





Alex now has NINETY friends on his map. How cool is that???!!! If you have not entered your name or picture, please do so and then we can see who some of our friends are! Also, if you have a second, please sign Alex’s guestbook. We cherish every message.

We hope that everyone has a VERY happy valentines day surrounded by those that you love.

Love MaryBeth & Alex

Saturday, January 28, 2006 2:32 PM CST

Be prepared! I went a little nuts with the camera this week. I have several videos in this post. If you see a picture that is smaller than the others, click on it and you can see Alex’s videos. They are only 10-20 seconds in length.



Have I told you lately what a pure joy it is to have Alex in our lives? He has been such a rascal over this last week and he is SUCH a 4 year old! As I was on my hands and knees this morning, unsuccessfully scrubbing scribbles off our wall, I thought “PRAISE GOD” that Alex can get on his knees, pick up that pen and scribble on my walls! LOL I bet you were thinking I was going to say something else!



And you will see why my heart is so warm and fuzzy if you watch this video of Alex saying “I love you Mommy”


Poor Alex has had the camera shoved in his face so often that no matter what he is doing, he stops and says “CHEESE” I can’t tell you how much this cracks me up! In the next video, he is working on balance and watching his train, till he sees the camera! LOL



Here is one of Alex Swimming! He has floaties on, and a swim belt. His ankles are weighted though, so he does not float onto his face. Won’t we get curious glances when we do this at six flags this summer!


In my last post, I told you how great it is that Alex can sit up for such a long time. Well, here he is!!


And just look at how much his face lights up about it. He is one proud boy!


Here is one that brings tears to my eyes. Alex has been doing this for quite awhile now, but it was one of those things that we just never knew if he would be able to do. It was one of THOSE monumental occasions when he first did it. I never get tired of watching him :) He is so amazing. And listen to him say "Cheese" right after he turns and sees me! LOL


HE DID IT!


I TOLD you that I had gone crazy with the camera this week, but Scott did too. Here is Alex and Holly in a great shot that Scott took.


And here is Alex riding backwards!


Alex’s OT Trish came over yesterday and we played a really fun game with dice. First, you write the numbers 1-6 on a piece of paper (1 for each player) and then each person rolls the dice and crosses off whatever he/she rolled. Whoever crosses off all the numbers first wins. Every-time someone rolled, Alex would help by counting the dots on the die and then showing them the appropriate number to cross off. It is a GREAT game for learning counting and number recognition. We had an absolute blast. Only one problem, ALEX CHEATS!!!! He had crossed off every number but 5 and we let him roll like 6 times extra and he kept getting 1 and 6. Well the last time, he got a 6 and counted the dots “1, 2, 3, 4, 5” and holds up his 5 fingers and says “FIVE!” The little cheater! hahahahahahaha. We said NOOOOO as we were hysterically cracking up and he starts cracking up and I had tears running down my face. Alex is just so amazing, and wonderful, and smart . . . and I am the luckiest Mom in the world!



If you have not signed our map, please feel free to do so. It is right above this entry. Also, please leave us a message in our guestbook. We treasure them. Have a great week!

Love, MaryBeth & Alex

Wednesday, January 18, 2006 8:08 AM CST

Well, the cold has hit us up here in Vermont. We went from a balmy 40 degrees the other day to a bone chilling 14 degrees yesterday and sleet and freezing rain this morning. Alex is all signed up for the Vermont adaptive ski program, and now I just have to pick a weekend to go. It will need to be a little warmer than 14 degrees though!

Alex is doing very well! His therapies are going great, and he seems to be making steady progress. The other night, he sat straight legged on the floor for over an hour! It was not that long ago that the goal was a few minutes. Hippo therapy is really helping to strengthen his upper body, as is PT. Alex can also sit Indian style for long periods of time. His balance skills are just so much better, it is amazing!



Here is a picture of Alex and Sissy listening to her ipod. Doesn’t he just think he is a big boy! Yes, the volume was LOW.



We are gearing up to increase OT as soon as Alex has his Botox in March. I am going to design, and Scott is going to build, a “creepster crawler” out of PVC pipe so that Alex can exercise his arms. His right arm has increased tone and is really holding him back at the moment. Fighting the tone just makes everything harder for him and this is a focus of the Botox this time around. If we can just get that arm to loosen up. . . it is amazing the domino effect one gain like that can have!

My school has started back up with a vengeance, as you can tell by the fact that I have not had time to sign guest-books this week! My judicial externship is just the shot of adrenaline that I needed though. It is SO amazing!

Scott is signed up for 2 classes this semester. He is excited to at least have a direction to go in, despite the circumstances. Unfortunately, we found out yesterday that TAA was not approved. To find out what that is, click the journal history tab and go back a couple entries. We are very disappointed.

On to good news! We have had several successful meetings for Alex’s Individualized Education Plan and it looks like everyone is on the same page with what Alex needs. At least this is one less thing to worry about!

I hope that you noticed our scrolling pictures right above this journal entry. There are lots of our friends there! If your picture (or your children’s picture) is missing, feel free to add it!

We are keeping all of our Caringbridge friends in our prayers. Sorry that it has been a few days since I signed guest-books. Please know that I do check on everyone regularly and will be back to signing on Friday.

A few weeks ago, I asked for prayers for Alex’s friend (and first PCA) Jessica because she has been having a rough pregnancy. Well I am happy to report that she has had no issues since I requested prayers and she is now a healthy 16 weeks pregnant! We are VERY excited and I am sure that all the prayers had something to do with this! Thank you for your continued prayers.

Please pray for our friend Collin and his family as he is having a really hard time right now. Pray for no progression of his disease. His entire family is just amazing and little Collin is a true fighter. He deserves a break. If his Mom gives me permission, I will add his link here later.

Thank you for all the prayers and for checking in on Alex. He is a lucky little boy to have so many friends!

Love, Alex & MaryBeth

Sunday, January 8, 2006 6:46 PM CST

Last week was rough. My mother always says that bad luck/news comes in threes and we got all three last week. That means, if her superstition holds true, there should be NO MORE bad news! LOL we can hope. We thank you from the bottom of our hearts for your sweet messages and e-mails. They truly lifted us up.

We have been and will be busy planning and figuring and trying to keep everything together. With our health insurance ending, there are a ton of appointments to make within the next couple of months. Fortunately, Alex should still be eligible for all his therapies, Thank God. He has a sleep deprived EEG on March 7 at Dartmouth and then Botox scheduled for March 9 at Boston Children's. The week after that, it is a regular dr. appointment on the 15th. March is going to be hectic!

This weekend was spent surrounded by family. We had our family Christmas at my Mom & Dad's. What better way to remind us of what is REALLY important, family and each other? We will muddle through, despite Scott's job situation, and hopefully end up stronger for it. Here are some pictures of our fabulous Saturday.

Here is Alex and Nanny. She could not go out of his sight without him hollering NAAAAANNNNNY!


Here is Alex in Uncle Geoffrie's hat. Just too cute if I do say so myself!


Here is Alex with reindeer horns on. He would have made a really cute reindeer.


My Mom & Dad bought Alex this really cool toy. He absolutely loves it! He was not sure about sticking his hands in the water, but as you can see by the next picture, he got over it pretty quickly!


Here is my little turkey, SOAKING wet!


And so, we begin another week. Let’s hope that this one starts out better. School starts for me tomorrow and so does my judicial externship. I am really excited about it!

If you have a second and have not done so, please sign Alex's friends map. The link is found directly above this journal entry. He has SEVENTY-FOUR friends on it so far, from as far away as Singapore, England and Australia! He has so many friends around the US too, and it is so wonderful to show him where everyone is and what they say to him! Also, please sign the guestbook. We LOVE to hear from our friends!

Thanks! Love Alex & MaryBeth

Tuesday, January 3, 2006 5:39 PM CST

It feels really strange to do so, but I would like to ask for prayers for our family. As most of you know, we were desperately hoping that Scott’s job would last until I am out of school. Unfortunately Scott's job, and everyone else's at Capital City Press, is gone in 60 days. About 200 people, so I understand. The doors are closing. Scott has been there for 21 years.

It was on the news tonight and it is a major blow for this area. The story can be found here and another one here The company applied for TAA which is federal training assistance for people who have been "displaced" due to overseas competition. Their application was denied, but an appeal is pending. If it is approved, Scott will get $20,000 worth of education paid for and he will collect unemployment during that time (somewhere between 60 and 130 weeks, depending on what gets approved). We are waiting to find out whether that appeal is approved, and we are praying hard for it.

The ONLY reason Scott would qualify at all is because he is technically one of the first "batch" to be laid off (the ones in November). Those losses were directly due to overseas competition. The 200 people who just got laid off are NOT eligible for the TAA benefit no matter what because their job loss is due to Capital City press sending the work to their other (sister) companies within the US (Dartmouth Printing and Sheraton Press just to name 2). Basically, this has been the Sheraton press' plan since they bought CCP 4 years ago. They wanted the contracts, NOT the union.

If the TAA is not approved, Scott will only be eligible for the "displaced worker" benefit which pays for $9000 worth of school but you only get your 26 weeks of unemployment. He would have to work 2 full time jobs with the wages available in this area to make up for what he is losing and he would have to do so WHILE going to school. As I said, we are praying HARD for the TAA to be approved. We will ALL lose our health insurance (except fortunately Alex gets the Katie Beckett waiver).

I know that there are many life situations far more dire than this, but if you could pray for us, we would really appreciate it. We are really in a turmoil, trying to figure out what to do. Poor Scott is just beside himself. I know that God has a plan, and I pray that we follow the right path in this situation. Fortunately, Alex is doing wonderfully well and we pray for that to continue too. Thank you for your prayers.

MaryBeth, Scott, Carolee, Spencer & Alex

Thursday, December 29, 2005 12:40 AM CST

I hope that everyone's Christmas was as wonderful and magical as ours was. Alex was absolutely beside himself with excitement! Christmas eve was spent making cookies for santa.

Here is Alex and Nanny rolling out the dough



And here is Alex and Mommy cutting it out.



And here is Alex deciding that eating the dough is much better than making cookies out of it :)



Fortunately, there was enough left to make a few cookies for Santa!



Here is what Alex saw when he got to the living room. You should have heard him squeal!



He was SO excited when he was coming down the stairs.



Here is his first glimpse of the tree



Alex and Bampa, relaxing



Opening presents with Nanny



Here is everyone getting ready to eat Christmas dinner. We each had a Christmas Cracker with crowns and toys inside, so we all wore them.



It was a wonderful Christmas and we hope yours was the same!

Could you please keep Alex’s first PCA Jessica and her husband Andrew in your thoughts and prayers? She has had 2 miscarriages and is currently 13 weeks pregnant but with the same type of bleeding/cramping that occurred with her first 2 miscarriages. Prayers are much appreciated. Here is a picture of Jessica and Alex.



If you have not done so, please add yourself to Alex’s map. The link is located right above this journal entry and there are SIXTY-THREE friends from all over the world on it!! It is so cool to see!

We love to read all the guestbook entries too, so if you have a chance, please sign it!

Thursday, December 22, 2005 6:05 PM CST

MERRY CHRISTMAS!!




I know Thanksgiving has passed, and Christmas is here, but, I made a list anyways. Here it is in no particular order.

I am thankful for . . .

No regression.

Alex’s first breath, it may have taken 40 minutes for it to happen, but I am so thankful to God that it did!

My Mom and Dad and Scott’s Mom, who never tire of hearing Alex stories!

Trish (Alex’s OT) for always laughing with me and not at me when I buy every toy in the catalog that “might” help Alex.

Alex being fully potty trained. His doctors are amazed and many kids with his history are never able to be diaper free. I did not train him, Alex willed it.

Geri-Ann for encouraging me to pursue hippo-therapy. It paid off big-time.

All of our Caringbridge friends who have taught me that it heals the heart to be supportive of someone else. (It also is a reality check that there are more people and more issues in the world than just you and yours!)

The ability to choose our own doctors under our insurance. It led us to Boston where Botox therapy has been a big part of Alex’s miracle.


The baby boomer generation. As they age, they demand more and more technologically advanced equipment to help them get through life. They have the money to pay for it and many new products for disabled people are being made. The entire disability community will benefit from them.

Every breath, every minute, every second of Alex’s life


Of course, I am thankful for other things too (Carolee, Spencer and Scott, to name a few) but since this is Alex’s page I will stick with these for here.

Alex received some Eli’s Angels shirts (as well as a WHOLE bunch of other wonderful surprises) in the mail the other day and he was nice enough to share them with the rest of us. Well Carolee and Spencer wore them the very next day and got to tell people all about Eli and the wonderful things that he led his parents to do. We sure do miss him.



The other night, the kids made a gingerbread house. They had a BLAST!!!



We will be spending the next couple days anxiously awaiting Santa and talking about the miracle of the Christ Childs birth. We wish you all a very MERRY CHRISTMAS and thank you so much for praying for Alex.

Love, MaryBeth & Alex

Friday, December 16, 2005 4:26 PM CST

MERRY CHRISTMAS!

Here is Alex after putting on the first ornament!


The following is what we sent out for our yearly "update" in Christmas cards. Those who received the original beware though, because there are some GREAT additions in this one, including information on Alex’s trip to Boston yesterday.

We hope that this letter finds you happy and healthy. It seems hard to believe that another year has passed and Christmas is upon us once again. The year has been a busy one indeed.

Carolee just found out that she has been accepted to Johnson State College. This was her first choice so she is very excited (and so are we!). She plans to major in elementary education. She was inducted into the National Honor Society last month and she was just elected treasurer of her school chapter. Just today (12/15/05) Carolee found out that she was accepted into the University of Vermont!!! Now it will be a matter of finding out which one offers her the best “deal” but Johnson is still the frontrunner!

Spencer made the honor roll this quarter! He seems to be settling into his freshman year quite well. Spencer has been getting involved in many school activities such as decorating a hallway with his class during spirit week. He joined the flag football team this fall and just joined the ski club.

Alex is doing amazing things. He is talking a lot now. Scott recently built Alex some parallel bars and Alex is working hard at mastering them. In October, we formed "Alex’s Team" and walked to raise mitochondrial disease awareness. We are proud to have raised $2,600! We plan to do it again next year. We just went to see Dr. Nimec in Boston yesterday and she is VERY pleased with Alex’s progress. Alex’s PT (Sarah) did an evaluation before we went and it was fantastic. Because we see Alex every day, sometimes we take his gains for granted because his is a slow, steady progress. Seeing it summed up in a report really brings home how BLESSED we are. Each time that Alex has had Botox, he has ended up in a better place than he was before the treatment. He is now walking the length of the parallel bars without assistance. ALL short term goals were met and almost all of his long term goals have been met. Ok, now I am teary. Here is how the report ends. "Over the next 8-16 weeks I would like to see Alex begin some standing static balance without support and possibly initiating steps without support. I feel he is on the brink of taking off with these skills." God is so good. We feel his blessings every day! Everyone agrees that Alex is ready for more Botox and this time they will concentrate heavily on his right arm (though they will do his legs/hips too). This will be in February or March. I will let everyone know when we find out the exact date.

Scott has finished two classes at CCV and he aced them both! He absolutely loved it. Unfortunately, it just got to be too crazy with both of us in school, so he decided to wait until I am done to take more classes. Unfortunately, his company is not doing well and they had a massive layoff in November. Scott was one of two in his department spared, but we do not know for how long. If they can only hold on till I am done with school . . . unlikely, but we can certainly hope!

It has been a strange year for me. In October, I hit a deer on the highway on my way home from school and totaled my car. I was very, very fortunate to walk away from that crash. You have to see the car to appreciate it, so here it is :)

The car went up on its side and slid down into a ravine after impact. It was a hairy ride. My law school bag (which weighs 75 lbs or so) went from my front passenger seat to my rear drivers seat . . . Oh the blessings we can count this year! And you can bet that bag gets hooked in now!

School is going very well for me. I have THREE semesters left. I recently found out that I have been accepted into a judicial externship next semester with a District Court Judge in Chicopee Mass. Externship selection is highly competitive, and I feel honored to have been selected. I was recently appointed the first circuit Lieutenant Governor of the American Bar Association’s law student division and was elected Vice President of the Student Bar Association.

We lost two very special friends this year when Heather and Eli both triumphed over the Mito beast and flew straight to heaven. To their families, we send our love and ask for prayers for them. Both Heather and Eli's families have been so inspirational to us. I can't even begin to explain the depth of our sorrow at their passing. Of course, both of them are running and playing up there, free from any heath problems. This makes me so happy for them!

We continue to be so very thankful to our supportive family and friends. This year, we are praying hard for a healthy, happy year for all of our family, friends, and especially our Caringbridge friends.

Alex’s Map (the link is right above this journal entry) has FIFTY people on it! It is fantastic! If you have not done so, please take a second and add your name and/or your picture to his map. TONS of thanks to those who have already done so! If you have an extra second, please sign Alex’s guestbook. We love to hear from all our friends. God bless you all!

Love, Scott, MaryBeth,
Carolee, Spencer & Alex

Saturday, December 3, 2005 8:02 PM CST

OK, be prepared to be inundated with pictures! Alex’s birthday party was today and it was a BLAST! NINE of Alex’s friends came, and he was soooo psyched every time one came in! As usual, mom and dad went a little . . . er. . . overboard with the party. Here is the table right before the guests started arriving.



Here are Carolee & Alex in their hats. Alex thought it was cool that sissy would wear one. Mom did too since I had my camera close by!



Here is Alex in his hat.



My mom made the cakes. They were impressive. It was a good thing she made two because we almost finished them both!



Here are the kids lining up for pin the tail on the donkey. It was so much fun!



Here is Alex with his piñata. I thought the pull the string one would be MUCH safer than the traditional kind, especially indoors! It was a lot of fun.



Carolee is so smart! She went to the top of the stairs and took this picture of all the kids collecting their candy and toys. I think it is a cool picture.



Here is Alex and his Cake.



We bought Alex the coolest puppet theater. It goes in the doorway and can be moved up or down so that it is the right height with his chair, or wheelchair, or on his knees. All the kids LOVED it, especially Alex.



Here is another one of our puppet-master! You can tell he loves it by the joy on his face.



It was SUCH a fantastic birthday! Now we are all ready for bed.

We have THIRTY SIX people on Alex’s map. It is amazing! He loves seeing where all his friends are from (and we do too!). The map link is located right above this journal entry and is really easy to do. If you have a second and have not done so, please add your name.

Please say a prayer for our buddy Collin. He is likely having seizures again and gave his mom a scare the other day. Thanks a ton!

Love, MaryBeth & Alex

Monday, November 28, 2005 6:45 AM CST

Our friend Elijah Jeramie Kurtz won his battle with Mitochondrial disease (Leigh’s) on Friday when he earned his wings. Although his mommy and daddy knew that this day would come, I cannot imagine that there is any preparing for it. Please visit Eli’s site at Elijah's Page and offer some supportive words in the guestbook. If we met you through your caringbridge page, we met you through Eli as his is the first page I ever saw. I followed the links in his guestbook to “meet” so many wonderful people, including Eli’s mommy and daddy.

Eli’s mommy and daddy started Eli’s angels, a nonprofit aimed at enriching the lives of those who suffer with mitochondrial or metabolic disorders. Alex was one of the first members, and now there are over 50. Amazing people, to look beyond their own pain and think of others. Special people.

Might I just add, no offense to anyone, but Mitochondrial disease SUCKS.

Thanks for letting me get that off my chest.

Alex’s birthday was yesterday and I cannot believe that my beautiful boy is FOUR. His birthday party is not until Saturday, but that did not stop us from having ice cream cake last night. Here are some pictures.









As soon as the cake started to melt, Alex started saying “more! More!” It was so cute. He is talking SO much more, but still almost only at home.

I have so many thoughts on my baby turning 4. I am hoping to share them later in the week. I may be MIA for awhile, but don’t worry. Law school finals are coming right up (Dec 7, 9, 10 and 12) so I am freaking out and trying to study at the same time. My house looks like a bomb went off. Real good time to plan Alex’s birthday party MaryBeth! Yah, well, with Thanksgiving and all, it was rough to pick a date that was not full. The little turkey! (pun intended) He was DUE November 6. Yes, you heard correctly, he was a FULL THREE WEEKS LATE. A Nov. 6 birth date would make my life much easier during exam time!

We now have NINETEEN people on Alex’s map which is located right above this journal entry. It is SO COOL to see all his supporters on the map. It truly only takes a second to do, so if you could take the time, we appreciate it. We have an entry from our friends in England too, so if you shrink the map (with the controls in the upper left) you can see them. Curiously, there is no entry on the WEST COAST which leaves us asking WHERE ARE COLLIN AND REGAN???? Hoping that their mommy will add our little buddys.

Thanks to all those who continue to support us through prayers and signing the guestbook. It truly does mean so much. We hope that everyone had a fantastic Thanksgiving and please know that you are one of the many, many things we are thankful for this year!

MaryBeth & Alex

Saturday, November 19, 2005 4:25 PM CST

Directly above this journal entry there is a new link to a map of Alex's friends. If you click on it, you can enter your city and state and even a photograph so that Alex can see where all his friends are located. Please add your name and location and check out where Alex is!!

Dartmouth got back to me and we are increasing the lamictal both a.m. and p.m. I have not seen anything funny since we started the increase two nights ago. He has seemed to be a little more rested in the morning too! Hopefully this will be the answer. Alex has a regularly scheduled EEG in March, and hopefully this increase will get us through till then and we can see what the activity looks like. I am sure that I will be a nervous wreck over that one because his last few have been BAD! ::::sigh:::: I wish I had a crystal ball to see what was going on in that head of his, but only if I had a magic wand to fix what I found.

I promised that I would tell you about Alex’s new parallel bars that Scott made and I attached a video of Alex using it. He loves it, but has a really hard time opening and closing and gripping with that right hand. We are working on it and I plan to ask his dr. if he can have more Botox in that arm. He has the balance and the strength, its just the hand that is having issues. As you can see in the video, I am helping him, but only a little. I am just guiding his hand forward where it needs to go. He is so proud of himself!



Alex started hippo-therapy today! He loved it! They did so many different things, like riding backwards, lying down, touching certain “spots” on the horses back while maintaining balance. . . it was amazing. I have a feeling that this is going to really help Alex. Here is a picture of Alex and mom on the ramp where Alex is waiting, not so patiently, to get on the horse.



Happily, he is finally on! He has only mentioned this a million times in the last week



READY to go!



Here is a Video of Alex on the horse calling out to dad to make sure he is watching.



Thank you all for the prayers, I know that they have worked wonders as always. I hope that everyone has a happy Thanksgiving and our prayers are with all of our caringbridge friends! Please don’t forget to sign the guestbook!

MaryBeth & Alex

Wednesday, November 16, 2005 8:46 AM CST

Thank you so much for all who continue to pray for Alex. He has had more seizures at night and even had one while his sister was with him in the morning. I called his neuro 3 times over the past 2 weeks and they just got back to me yesterday saying that the results of the lamictal level showed that it was low. The nurse said she would get back to me yesterday afternoon after discussing it with the dr. to determine how to proceed. Of course she didn't. Now, I fully realize that this situation is not an emergency (except to US) but it has been over 2 weeks since that blood work was done. :::::sigh::::: I also know that Alex is having seizures at night because he is exhausted in the morning, even if we put him to bed early.

If you could, please say a prayer for Alex's daddy and all of his co-workers. Today is the last day that 40 or so will be working at his company as they all got laid off. Scott's entire department was basically liquified leaving only he and his friend Rick in it. It is a very rough day for all of them. That place has been Scott's other family and they all showed such support when we had Alex and then again when we had the recent walk. I have to tell you, with tears in my eyes, that Scott's co-workers gave over $400 to the walk and this was AFTER they found out about their jobs being lost. Scott has worked there for over 21 years.

We believe that it is just a matter of time before Scott loses his job too, and are praying that it can be AFTER I finish law school in a year and a half, although it is unlikely that he will have it that long. The jobs were lost because of the overseas competition thanks to NAFTA. Thats all I will say on that.

I will stop here as it is almost time for me to head to school. I will try to update again with pictures of Alex's new parallel bars that Scott built for him. He LOVES them!

While you are here, please take a moment to sign the guestbook! Thanks.

Love MaryBeth & Alex

Sunday, October 30, 2005 12:39 AM CST

November 4 Update

Thank you for all the prayers!! Alex has not had any more problems since my last post! We are certainly praying that it stays that way.

I wanted to share this little video clip that I took of Alex a few minutes ago. Alex is soooo determined. He has limited use of his hands, although this has gotten MUCH better thanks to his OT Trish, but look at him with that magnetic fishing pole going after those fish!!! By the way, he does NOT fall over in the end :)



Tomorrow we are going to see a production of The Wizard of Oz. Scott's brother Paul is playing the cowardly lion.

Please, don't forget to sign the guestbook!

MaryBeth & Alex


November 2 Update

First, I would like to ask for some prayers for Alex. For the past couple nights, he has been having what we feel are seizures while he is asleep. His whole body jerks for a couple seconds and this is how his seizures have manifested themselves in the past. What is particularly worrying is that he just had that huge increase in lamictal (anti-seizure med). Also, we know that his seizure activity does not outwardly manifest itself until it is hugely apparent on his EEG. For some reason, the spikes that cause lots of kids to actively seize work under cover in Alex.

Last night we went to Dartmouth so that they could do a blood level and then we will go from there. Poor Alex also had a flu shot at Dartmouth at the same time because his regular doctor had no Thimerisol free flu vaccine. This is Alex’s first flu shot and I really did not want to take the chance with mercury since there has already been a link between autism and Mito and a speculative link between autism and mercury.

I was told that we should have the blood levels on Monday and I will update then. Obviously we are praying hard that this is not “new” activity and is simply the same old same old just under-medicated again.

In brighter news. . .

Alex had a fantastic day at school on Halloween! He was dressed up and paraded with all of his classmates and the kindergarteners through the school. I was there and used his gait belt to “bounce” him through all the rooms. The kids LOVED it and lots of them told him he had a great costume. He signed “thank you” independently to one of them!

Here is a picture of Alex’s preschool wearing the “harvest hats” that they made.



Here is Alex sitting at school.



Here he is marching.



Later that night we went trick or treating. Alex was saying “trick or treat” and “thank you.” He had a blast.




Sunday, October 30 Update
HAPPY HALLOWEEN!!

Alex, Carolee & Spencer are posing with some of the pumpkins that we carved.



All of the pumpkins would not fit in one picture, so I took another :)



We want to thank everyone for their encouragement regarding Hippo Therapy. Those happy thoughts and prayers paid off as Alex was approved for it! It turns out that Sarah (water therapist) is cutting her hours. Alex will be able to go to Hippo therapy every other week and water therapy every other week. What is really fantastic is that we can still go to the pool every week because Sarah is renting it for us even though she will not be there. We can follow up on what she has been working on with him. I just need to get a swim belt for Alex and we will be all set!

We went to visit the horses yesterday! Alex’s horse is named Holly and she is a beautiful white one (this is the extent of my horse knowledge lol). Alex kept pointing to the horses and saying right now, right now and pouting. He did not get to ride, this was just an introduction day. It was great to see him so excited about it though. I think that it is going to do tremendous things for him! I will take some pictures of his first time riding. Hopefully, we will begin next week.

Here is a new video of Alex on his bar. He is getting much quicker!



Here is a picture of Alex painting.



We just had our pictures done last night! We have not had a family picture taken since Alex was 11 months old! Here they are.



Alex is so excited about his birthday. He is all excited to have his friends over and have a party. He was born on November 27 but we are having the party on December 3. It will have a Mickey Mouse theme.

We hope that everyone has a very happy Halloween. I will post pictures of our little trick or treater on Tuesday! Please sign the guestbook!

Love Alex & MaryBeth

Saturday, October 22, 2005 7:32 PM CDT

Sunday, October 23 update

HOLY SMOKE!! Guess what we woke up to!



Alex and Scott had a blast making the snowman. Alex did NOT want to come in though. A bit of screaming and a hot chocolate bribe later . . . LOL. Hope your Sunday is a bit . . . warmer than ours!


Saturday update


Things have been absolutely crazy around here! Alex has been well, and has been having, for the most part, a fantastic Autumn.

Last week, we were at swim therapy and Alex decided to zip around the parking lot (which is huge and has almost no cars). He loves to run in his walker and that is a great place to do it. . . except at the very edge which has a dip. Well, Mommy said “Alex, don’t go there or you will fall down.” He tossed a grin over his shoulder, let out a shriek of glee and he hit that dip going full throttle. Despite my being only a step behind him, I could not catch him in time and the walker wheels got stuck in that dip and then the walker . . . t i p p e d o v e r . . . frontways! So there lay Alex, shocked beyond belief, with his face in the dirt. He did not cry till I scooped him up and then he screeched like a banshee, more at the injustice of it than pain, I think. Of course, I did the mommy thing later on and gave him a lecture about how important it is to listen when a grown up tells you not to do something so you wont get hurt :) He, of course, agreed whole heartedly. . . until the next time anyway!

Here is a picture of Alex’s boo boo face. Please remember though, that right before snapping it, I said, Alex, give me a sad face! Wow, I think he is gonna be an actor, he did so well!



And then . . . right after I told him good job.



We got our pumpkins yesterday and had a blast carving them. Here is Alex carving a pumpkin with Mom



Alex could not get enough of the pumpkin goop! He liked sticking his hands in it.



Here is the window in Alex’s playroom that we decorated. Please keep in mind that HE picked what was going on the tombstone. Scott helped by giving him choices. . . lol he should have thought a little harder!



Here is a video that Scott took of Alex today while I was gone with Carolee to a college open house. I can’t believe that my baby is going to college. . . ::::sniff:::: anyway, the video is very sweet.



Here is Alex with his maple moose pop making a sticky mess of himself!



We hope that everyone has a fantastic week! Thanks for stopping in and while you’re here, please sign Alex’s guestbook!

Sunday, October 2, 2005 8:25 PM CDT

Sunday, October 9, 2005

I could not bear to part with the pictures of the walk, so I have kept them below this update!

Alex is doing fantastically well and is a delightful little rascal. The video I am about to share is amazing. The sheer determination of this kid!!



Next thing you know, we will have a bar on every wall :)

I spent a bunch of time signing guestbooks this week, but the picture did not come out! Of course, I had signed about 15 before I figured this out (thanks Brenda!) The following is the picture.



We found out that Alex is NOT eligible for Hippo therapy. I was told that the budget had already been slashed for therapy services and he was lucky that he gets as much as he does. This was NOT said meanly, just realistically. I will be exploring other options this coming week. I just KNOW that hippo therapy would benefit Alex tremendously, added upper body strenght, increased leg muscles, balance. . . I will keep trying.

The Friday before the “Mito What?” walk, we took Alex and Spencer to see Sesame Street Live, SuperGrover. We had fantastic seats. There was only one row in front of us and we were at CENTER STAGE!! Alex loved it!





We had a chance to go biking a couple days ago and it was wonderful! Alex absolutely loves his new ride and it enables us all to have some family time together. Of course, I did not volunteer to be the one pulling Alex LOL.



I will leave you with a picture of Alex and “his” pumpkin.



Happy October to everyone! Please, sign the guestbook so that we know that you have come to visit!

MaryBeth & Alex

PS, please pray for Alex’s buddy Collin. He has been in a tremendous amount of pain lately and his mommy and daddy got bad MRI news. They could all really use your prayers. Thanks.






Today, Alex’s team went to war.
For today,
we left behind feelings of helplessness,
and hopelessness.
We stood toe to toe with the mito beast
with hope in our heart
and declared ourselves the winner,
because hope has survived the monster!

We walked for every family
That has had a child stolen from them,
And for every family,
that has had their dreams stolen.
We walked for Heather and Eli.
We walked for Patrick and Kirk.
We walked for Wyatt and Alex
And for the countless other children
who have fought valiantly for health,
and for life

Finally,
we were given an opportunity
to be proactive,
no small miracle
with this disease where so little is known.
We embraced it,
with both hands.

And so today,
We marched with hope
and conviction.
And although tomorrow may bring more confusion,
and worry, and endless prayer,
we will always have today
where we declared victory over the beast!


Thank you for all who donated to Alex’s team and helped keep hope alive for so many families affected by this disease. Thank you so much for all who walked or ran!!! The following is a pictorial of the walk. ALEX’S TEAM RAISED OVER $2600.00!!!!!!

Love Alex, MaryBeth, Scott, Carolee & Spencer

Sunday, September 25, 2005 5:03 PM CDT

This has been a really good week for Alex. He still loves preschool and they seem to be very responsive to any of my concerns. I am keeping my fingers crossed and knocking on wood that this will continue.

Zack (Carolees boyfriend) decided that Alex makes a good workout partner :) Alex was having a ball being. . . bench pressed!



We bought Alex a new bike carriage so that we can start biking. Really, spending all my time reading lawbooks has not done a thing for my waistline (I am not sure I HAVE one anymore!) So we decided to start biking. The cool thing about this one is that it turns into a stroller with a really quick adaptor so we only have to bring this if we go camping. The whole thing holds up to 100 pounds and folds to about 3 inches flat. Alex LOVES it.



On Saturday, we went apple picking. Adam’s orchard in Burlington VT has a handicapped section so that the apples are low for people in chairs. You have no idea (or perhaps you do!) how much it meant to Alex to be able to pick his own apples. I swear that I almost cried. The stuff we take for granted. . .



Look at that proud face. . . He got one!!



Alex decided that he wants to be Tigger for Halloween. I ordered the costume online. I warned Scott not to put the costume on Alex when it came because last year we did that and he ended up getting sick of the first one so we “had” to buy him a different one for Halloween. It came on Friday and of course, I put it right on him LOL



Then, he would not get out of costume! He loves it so much, he was bouncing everywhere LOL We have to keep it out of site until a little closer to Halloween. Anybody want to take bets on how long I will last?



It is now officially fall at our house which means the pool came down and the trampoline went up. Yup, we have a 3 season flat sand spot at our house! Here is a video of Alex and Carolee on the trampoline




Thanks for checking up on Alex. Please sign the guestbook so that we know who has been to visit! Please note that the new total raised for the “Mito What” walk is OVER $2000! It is in red above.

Please say a prayer for our good buddy Eli so that the gunk in his lungs clears up and for all victims of the hurricanes.

Love, MaryBeth & Alex

Tuesday, September 13, 2005 11:02 AM CDT

UPDATE Friday 9:01 PM

It is with the deepest regret that I must write that beautiful Heather earned her wings this morning. She is now walking with the angels. My heart is breaking, but I am more determined than ever to help find a cure for this horrible disease. Heather, we will miss you, and we all love you. Paul and Heidi, may you somehow find peace and know how much we are all thinking of you.

FRIDAY UPDATE

Heather has taken a turn for the worse. Please say a prayer for her and her family. You can visit Heather by clicking the following link. Heathers site

TUESDAY, September 13 update

Alex’s first day of preschool was last week. He absolutely loves it! He is talking soooo much more now, and he does not appear to be self conscious about using his voice in front of the other kids like he was last year. A lot of this change could be related to the medication increase. In the morning at preschool, each child takes a picture of an apple with their name on it and put it on a Velcro tree. Then they are supposed to say “I am here!” For the first week, Alex just could not get the words out. He practiced all weekend and Monday brought a loud “I AM HERE” at the appropriate time! All the kids said “he did it!” and some started clapping. The joy on Alex’s face was indescribable.



Alex is doing very well in swim therapy and in physical therapy. He has this due to his stroke at birth, but regular exercise has also been found to help mitochondrial disease of the muscle. Beyond his stroke, Alex is still not symptomatic of MITO and for that we are very grateful. Here is a picture of Alex with his PT Sarah who does both water therapy and PT with him.



Here Alex is walking on a ledge in the pool. Can you tell how happy he is?



Alex also has a wonderful therapist named Trish who has been working with him since he was a wee one. Here, they are working on balance and trunk rotation on Alex’s new peanut ball.



Here is an AWESOME video of Alex swimming with Sarah. Boy does he love the water!



Alex has so much therapy, you cannot imagine. If someone is not at the house, we are getting water therapy and PT or doing an elaborate stretching and exercise routine at home. We even hope to begin therapy using a horse. He has so much therapy because he responds so well to it. This boy, who everyone once looked at as having severe limitations has blown everyone away. His determination and sheer will are a miracle in and of themselves. Of course, his therapists must be given a massive amount of credit. They ALWAYS manage to keep him interested, and you can see why in this adorable (if I do say so myself) video with Alex on a ball with Trish.



We are still fundraising for the “Mito What” walk on October 2. If you could sponsor us in the walk, that would be great! The Walk information, including total funds raised by “Alex’s Team” is above in aqua. If you would like to learn more about the REAL faces of MITO, click around in Alex’s guestbook and meet many wonderful, courageous children who battle this disease every day. Alex’s team will be walking to honor each and every one of them. If you could, please pray for Heather who is currently in the hospital. She almost earned her wings the other night when her heart stopped for 45 minutes. She is from Massachusetts and we were hoping to meet her at the walk. With a miracle, that could still happen. Thanks!

MaryBeth & Alex

PS, don't forget to SIGN THE GUESTBOOK so we can tell Alex who has come to visit!

Thursday, September 1, 2005 12:14 AM CDT

I just spoke with Alex’s neurologist at Dartmouth and we are going to continue increasing the Lamictal (seizure med). So far, Alex has had only positive effects from these increases. Lamictal is tricky though because it can cause serious side effects, even death. This would be preceded by a noticeable rash though, and as long as you discontinue use immediately, you can avoid any problems. So far, so good. By the time that we are done with the increases, Alex will likely be on 3 to 4 TIMES the dose he was on 2 months ago. He was WAY under-medicated.

The Champlain Valley Fair was SO much fun for Alex. He even got over his fear of horses!!! Last year he would not go near them. This is fantastic as it allows us to consider therapy using a horse (strangely enough, this is called hippotherapy because hippo is the latin word for horse). That could really help strengthen his body.

Here is Alex on the horse. He had 2 rides.





Here is Alex, Carolee, Zach and Spencer on the bear ride (like the teacups)



Here is Alex driving a car.



And on the copter;



Playing some games;





AND THE BEST ONE OF ALL!!! I took video of Alex and Spencer on the ROLLER COASTER. Click the link below to see it. It is really short but the last frame is priceless. If you get a message about restoring a mime file, click yes, then re-click the picture and it should work :) Alex and Spencer are in the 4th car back!



Please don't forget to SIGN THE GUESTBOOK. Alex loves to know who has come to visit!

Friday, August 26, 2005 6:42 PM CDT

SATURDAY UPDATE

The ice cream social was a BLAST. There were 29 people in all. Just LOOK at all the toppings, and that’s me scooping ice cream!



Here is Alex with whipped cream face.



Here is ADORABLE Luke (our friends Tom and Brandy’s son)



And here is Luke with his Mom Brandy. He is so cute that I had to put 2 in!



Here is a bunch of people getting ready to chow down.



and here is cool dude Alex in Tom’s sunglasses.



Tomorrow, we are headed to the Champlain Valley Fair so I will probably post more! Have a great weekend everyone!

FRIDAY'S UPDATE

I can’t believe how long I have gone without an update! School started for me, plus I have been racing around for our Ice Cream Social tomorrow and Alex has had his usual abundance of appointments. Where did the summer go?

Alex is doing wonderfully well. His speech continues to improve and so does his balance. I have been kicking myself quite a bit over the last few weeks for not insisting on a therapeutic level for his meds. Sure. . . try to wean him off of them, to what effect? The poor kid. I need to call on Monday to see what the next increase schedule will be. I think that they will probably want a level which means a poke. Alex deals with pokes better than his mommy does. Alex has had no apparent negative effects from the increase in meds, which is fantastic.

We have gotten Alex to take 2 steps several times now, but never 3 again. It is step step fall into your arms giggling. He thinks that the falling part is a game, so he does not even try to go the 3rd step. I am not sure what to do about that. We most certainly are going to get parallel bars and bars for the walls to encourage his walking.

School for Alex was supposed to start this coming week. I heard that this will be delayed because the preschool is not ready. A good thing it is because the school has not found an aide for Alex yet. This is driving me insane. The person has to be trained to deal with Alex’s very special communication needs. It’s not like I can just leave him in the classroom with the teacher. Alex would not be able to communicate at all. It will take more than a day to train the person, likely a few weeks. I will definitely be going to preschool with him till then. . . I am sure my homework will keep during that time HAHAHAHAHAHAHA

If you can’t tell, I am not in the greatest mood. I had a dream last night that one day Alex just started walking and talking all at once. He was RUNNING across a field. I was laughing and crying and telling his therapists about this miracle that we got etc. Then I woke up. I cannot even describe the emotions that I felt when I woke up and reality slapped me in the face. For a moment, I believed it happened, and then I realized it didn’t. Then I felt horribly guilty for giving walking such importance. I mean, can’t I just accept Alex for who he is? Then I worry that all the gains that Alex has made will be taken from him if MITO decides to rear its grotesque head. I see the trouble that our friend Patrick and Eli and Wyatt go through and wonder when it’ll be Alex’s turn. Alex’s case is different because everything he suffered, he suffered at birth. He has only improved since then. But I know that means nothing. Any organ, any age.

I will update again tomorrow after the ice cream social with lots of pictures. I am sure I will be in a better mood then. Please say a prayer for Patrick. Thanks!

MaryBeth & Alex

Friday, August 26, 2005 6:42 PM CDT

SATURDAY UPDATE

The ice cream social was a BLAST. There were 29 people in all. Just LOOK at all the toppings, and that’s me scooping ice cream!



Here is Alex with whipped cream face.



Here is ADORABLE Luke (our friends Tom and Brandy’s son)



And here is Luke with his Mom Brandy. He is so cute that I had to put 2 in!



Here is a bunch of people getting ready to chow down.



and here is cool dude Alex in Tom’s sunglasses.



Tomorrow, we are headed to the Champlain Valley Fair so I will probably post more! Have a great weekend everyone!

FRIDAY'S UPDATE

I can’t believe how long I have gone without an update! School started for me, plus I have been racing around for our Ice Cream Social tomorrow and Alex has had his usual abundance of appointments. Where did the summer go?

Alex is doing wonderfully well. His speech continues to improve and so does his balance. I have been kicking myself quite a bit over the last few weeks for not insisting on a therapeutic level for his meds. Sure. . . try to wean him off of them, to what effect? The poor kid. I need to call on Monday to see what the next increase schedule will be. I think that they will probably want a level which means a poke. Alex deals with pokes better than his mommy does. Alex has had no apparent negative effects from the increase in meds, which is fantastic.

We have gotten Alex to take 2 steps several times now, but never 3 again. It is step step fall into your arms giggling. He thinks that the falling part is a game, so he does not even try to go the 3rd step. I am not sure what to do about that. We most certainly are going to get parallel bars and bars for the walls to encourage his walking.

School for Alex was supposed to start this coming week. I heard that this will be delayed because the preschool is not ready. A good thing it is because the school has not found an aide for Alex yet. This is driving me insane. The person has to be trained to deal with Alex’s very special communication needs. It’s not like I can just leave him in the classroom with the teacher. Alex would not be able to communicate at all. It will take more than a day to train the person, likely a few weeks. I will definitely be going to preschool with him till then. . . I am sure my homework will keep during that time HAHAHAHAHAHAHA

If you can’t tell, I am not in the greatest mood. I had a dream last night that one day Alex just started walking and talking all at once. He was RUNNING across a field. I was laughing and crying and telling his therapists about this miracle that we got etc. Then I woke up. I cannot even describe the emotions that I felt when I woke up and reality slapped me in the face. For a moment, I believed it happened, and then I realized it didn’t. Then I felt horribly guilty for giving walking such importance. I mean, can’t I just accept Alex for who he is? Then I worry that all the gains that Alex has made will be taken from him if MITO decides to rear its grotesque head. I see the trouble that our friend Patrick and Eli and Wyatt go through and wonder when it’ll be Alex’s turn. Alex’s case is different because everything he suffered, he suffered at birth. He has only improved since then. But I know that means nothing. Any organ, any age.

I will update again tomorrow after the ice cream social with lots of pictures. I am sure I will be in a better mood then. Please say a prayer for Patrick. Thanks!

MaryBeth & Alex

Sunday, August 14, 2005 3:57 PM CDT

Alex’s botox/phenol injections went well. As usual, he had a difficult time coming out of anesthesia and I thought that our nurse discharged him a little soon. He was still pretty out of it. Right after that, we went and had night casts made. After screaming for awhile, he finally fully came out of it and was his happy self again. Alex picked dinosaur casts! He insisted on wearing them out of the hospital and all around the mall afterwards. You should have seen the looks. Must have been just because he is so cute LOL.

Dr. Nimec concentrated most of the injections in Alex’s hip area. We wish he weighed more because you can only give so much Botox per weight and she felt that she had to shortchange his calves to concentrate on the hips. Evidently, lots of kids with issues like Alex have to eventually have hip surgery and even replacement. She feels that we may bypass this using the Botox. He may eventually need heel cord release, but she said this is a MUCH more simple procedure.

If we continue to stretch him multiple times a day, we can likely avoid the heel chord surgery too. As I sat there after our conversation, I was overwhelmed at how fortunate we are that we have such amazing technology today. Without the magic of Botox, Alex would almost certainly have to have the aforementioned surgeries. His PT said that many children with similar issues have to have them.

Alex is talking so much more. “NO, right NOW!” is a favorite, as is “go away poo poo head!” LOL We even get spontaneous “I love you” and “thank you.” It is enough to make me sniffle and tear up through my smiles. I never really thought about how important communication is before we had Alex. Now don’t get me wrong, a lot of Alex’s words only WE can understand, but some that only we could understand before are clear as a bell now. He is getting better and better at them and he is not afraid to TRY. Oh how blessed we are!

Yesterday, our neighbor had a yardsale and we bought Alex a new slide. He was having a blast!







Alex is still loving Mickey Mouse and he and Scott were playing on the couch with Alex’s stuffed Mickey’s.



Today, we went to visit Scott’s mom. She was really impressed with all of the new things Alex is doing. Carolee held Alex upright so he could catch his balance and he took THREE STEPS towards me. We were freaking out!!!! Here is a picture of Alex and Grammy.



We hope that everyone has a fantastic week. Please don’t forget to sign the guestbook!!

MaryBeth & Alex

Tuesday, August 9, 2005 9:45 PM CDT

Alex is doing great. So far so good and he has not had any negative side effects from the medication increase.

We will be travelling to Boston tomorrow night because Alex has botox/phenol injections scheduled for 7:30 Thursday morning. Please say a prayer for him as he usually has a rough time coming out of the anesthesia.

Alex got a BIG BOY bed! I know, I know, he should have had one long before now, but he could never get out anyway, so the crib gave him extra protection (i.e. he could not roll out). Anyway, he LOVES his new bed. You will be happy to know that the blind string has been removed and the window is locked (before anyone asks!).





Here are some pictures that were taken at my cousin Jason's wedding. The first one, Alex is burning up the dance floor with his Nanny and the second one is a family picture.





And here is a picture I took today of Alex on his bike!



Thank you for all your kind words regarding Alex's EEG. It sure helped having everyones support!

Please don't forget to sign the guestbook since you are already here!

MaryBeth & Alex

Re: my cousin Christy. Thanks for all the prayers and please continue to storm heaven with them. Hayden Andrew Aloysius Robinson was born yesterday via c-section. They had trouble getting him out. He is in the NICU because he either breathed in amniotic fluid or has pnemonia. The docs have not been really forthcoming with information to her. He is under an oxygen tent and no one is even allowed to hold him. As we all know, sometimes you have to demand answers. Her mom and grandmother are working on this. I will update here as soon as I know more!