History

Journal History

Friday, September 29, 2006 4:55 PM CDT

Hi All,
I couldnt begin to tell you how Michaela has grown!
A few of you seen her at the symposium.
She has gotten taller since then and know is 30 lbs.
She is now in her second year of pre school and loves it.
I cant beleive that in December she will be 5 years old.
Michaela is a smart little girl she is a true 4 year old i can attest to that and doesnt miss a thing.
She is very outgoing and she is very very determined to do what she wants to do and finds a way to do it.
She is also very entertaining if she can make you laugh she will keep going and going.
She is gettin so she can say more words all the time.
She answers questions appropiatly and is a true girly girl.
She loves her friends at school and they love her.
Micheal makes friends easily and is a good girl too I may add.
Cognitivly she is right on fo her age.her fine and gross motor skills are way behind but she will catch up iam sure with her determination she will. She says her name like so if you ask her, her name she says makayyyy and you say to her say la and she will say yea..lol she is so funny
She walks in her walker all over and she likes the independance that gives her.
She is going to a wheel chair clinic as she is needing some more mobilitay and independance too.
She conitnues to amaze everone of us she is a true transplant miricle...
She loves the backyardagains and i think its because they sing which she likes to do and she likes all the colors.
Michaela is a sweet girl we love her so much!
Please keep Michaela in your prayers.
Hugs...Julie

Monday, March 20, 2006 7:02 PM CST

Hi ALL,
It has been monthes since I updated sorry about that!
Well lets see Michaela got back a week ago from
her follow up with Dr. Kurtzburg.
Keely says they were very impressed with Micheala.
The couldnt beleive how much she has grown and matured in the past year.
The peliminary tests look great and Dr K feels that she is completley out of the woods from the transplant.
The only thing we have to work on is her spasticity in her legs due to her hips.
Dr. K wants her to have botox in both legs and a new hip brace and we will see how that helps.
In 6 monthes Keely has agreed to take Michalea back to Dr. K for an evauluation of how that is going.
Her eyes are good she still needs her glasses but they are fine the Dr. told Keely.
Michaela has done so very well we couldnt be more pleased with her.
She is very smart I know I am her grandmother but I cant beleive all she can do and her thought process is right where it should be.
She doesnt miss one thing and makes all her needs known and she will tell you what she wants and doesnt want.
She is a wicked home body and was so home sick out in N.C.
Home she kept telling her mom Home! and when they took her off the plane she looked up and her grandfather and I and giggled and said Home. She was just so happy to be home.
Micaela goes to pre school and just loves it she is so proud of the work she does there and brings home to her mom.
She has learned so much being there it is so beneficial for her.
She has all her thereipies and does well with them.
Her head control is getting alot better and she sits up so well now.
Oh and since last update she has a walker and she just loves that she has her own bit of independance now and she thinks that is so cool. she walks all over in it and tries to get in to things.
She is totally in love with Elmo she has one and it goes every where and I do mean every where with her.
She loves the Laurine Berkner band, for those of you who dont know Laurie is in Nicolodeon and plays a guitar and dances to songs she makes up the kids love her and Michaela gets so so excited when we put it on for her! Tooo funny she will sing along with her and laugh and make her feet go she has us all laughing so hard the other night.
So to sum things up we couldnt be more pleased at the out come of her testing this year and want to thank Kelly for all her help and Friendship while Keely, Mark and Michalea were there we Love yeah, Kelly:)
Hope you are all getting ready for spring as today was the first day. God bless and Hope you sign the guest book.
Julie

Friday, September 30, 2005 10:51 AM CDT

Hi All,
It has been a while since I updated the childrens pages so here I am...
We certainly have alot of news on Miss Michaela!
you wont beleive this but she now goes to pre school... yup and she loves it so much she cant wait to go every day.
She attends a really nice pre school and she has goals and such that she will do.
Her schedule these days is very busy Pre school and then Therapies daily.
She loves being with the other children and they love her they wait for her to get there in the morning calling her name as she comes in the door.
Lets see this little bundle of dynomite is always full of it she is most entertaining these days.
She is very smart she has the mind of a typical 3and a half year old if only her body could do it all and yet we know some day she will.
I dont know if you all knew but Michaela had hip surgery in July to put her left hip back in joint. It was out due to being non weight bearing and such, She was in a full spica cast all summer poor little thing and after 6 long weeks had it off now she wears another brace at night when she sleeps.
Well just prior to the hip surgery she wanted us to walk her continually now she wants to baby that leg I suppsose she remembers the pain too much?
So we have been fighting to get her a walker which is now in the works.
She too has gotten tall and she talks and jabbers a blue streak. the following words she says very clear,
Momma, Go ba which is what she calls Grampie.Mark, Pie,
owl, yes, more and there may be more i cant think right now she tries very hard to talk and what she says she says well.
She sings la la la style and giggles all the time.
She eats like there is no tomorrow I honestly dont know where she puts it Keely says she is a tank....
She is still tiny just tall and thin.
She loves to color pictures and any thing that requires thought like putting shapes in the right slots and such.
She really catches on to things quickly it is so amazing.
Lately she loves to hold Pie and if she sees you coming with him gets all excited she kisses and hugs him and he loves it. I think he likes to hear her voice.
Michaela has her mothers dispostion which is good in one way...lol she has a will to do and is a definate go getter.
I just know great things are in store for her I know she will walk because she has the will and what ever Micheala wants to do she does and does it well.
Just the othere day Keely was telling me she went to put Micheala in the car to go some where and she said with a question in her voice to Keely "Momma" and keely said what babe and she looked at Keely and said" GoBa which remember is what she calls Grampie. What she was clearly telling Keely was she wanted to go see Grampa..lol too funny.
This transplant was such a miricle and Michaela is proof.
Micheala keeps us lauging she is just one of those kids that know how to entertain and will do any thing to make you laugh if she thinks she is funny she will keep on doing what ever it is.
I love being able to show her some thing and she copies you right away.
Iam trying to update the pictures but I got them too big so I am still working on that. But check them out.
I cant beleive how big our girl is getting and soon to be 4 wow where has time gone?
God Bless.
Julie

Tuesday, June 14, 2005 5:39 PM CDT

Hello,Friends
I cant believe it has been so long since I updated these journals.
Well guess I will have alot to share this time wont I.
last Thursday Micheala underwent hip surgery on her left hip.
All went very well and the surgeon was pleased and did not have to do all he thought he was going to have to do.
Origionally he thought they would have to put a plate in, although it wasnt needed he did cut her abductor muscle and he said the femur head fell right in place where it should have been.
She now has a spica cast on that starts from her arm pits down it is big and heavy and just plain miserable, for her to have on as you can imagine in the summer heat.
She will need this for 6 weeks and it will be a long six weeks.
Micheala continues to amaze us with all she can do and say,
She goes to speech therapy once a week and is learning speech and sign launage and she has P.T the rest of the week that currently is on hold.
The poor little girl is wondering what they have done to her now and why she cant move. Hopefully this will be for the best, before surgery she was wanting to walk so bad we just know she is going to walk she tries so hard and is so determined and she continually wanted to have you walking her before she had surgery.
Micheala answers yes and no appropriatly and says lots of words and is the biggest cookie monster you ever seen she loves cookies and juice!
She remains the happiest little girl ever she is always smiling and giving kisses and hugs.
She is so smart and knows exactly how to get her way.
Her Mother and Daddy Mark whom she loves so much were married in a beautiful ceremony on May 7th Micheala and her Brother Pie were in the wedding and were beautiful as always.
They all live together in a happy enviroment with lots of support from both families.
Daddy Mark goes to every appointment and helps with every thing the children need and is Keely's soul mate for sure.
Micheala wanted me to add new pictures so check them out!
I promise to try to update more often time gets away from me some times.
Please keep her in your Prayers fro a nice recovery and timley healing of her hip.
Love and Hugs to all.
Julie

Sunday, December 5, 2004 5:40 PM CST

Happy Birtday Sweet Girl,
Michaela will be Three years old tomorrow:)

Wow I can hardly believe that 3 years have gone by and yet some times it seems like forever since she was at Duke.
Michaela has been through so much in her 3 young years.
Yet to look at her you would never guess it!
she is the most outgoing, happiest little girl you could know.
She is full of hereself, I could go on for days.
Let me see she talks so much now and copies things she sees on the childrens tv shows. It is so funny to see her copying the dance acts they do she will sing and raise her arms and try to do every thing they do.
She doest miss one thing not that she ever has but now she does what she sets out to do.
she goes to speech therepy and Physical therapy and loves them both now. This week she starts backd oing O.T.
Michaela still is woking on good trunk control. She has come along way but that tends to set her back. I hope some day that will be 100 percent. she doesnt yet set up on her own. She can stand up against things for a few minuites but,she hates it her legs are very strong and she could walk but she is her own worst enemy some times.. If you know what I mean she just doesnt want to try to walk?
Her therapist said she really cant until her trunk control gets better. We can wait she will be busy and we alll know she will walk some day.
She will be going to Duke in March her and her mom and Daddy Mark are all going. Pie will be staying with Phil and I.
Keely is anxious to go she loves to get there and see every one. they did live there for 5 plus monthes so its another home to her.
For all of you wondering Keely is very happy and settled they are planning a wedding for summer.
Mark is a wonderful person and loves her and those babies so much. He doats right on her and the babies and they want for nothing. Most important I have never seen Keely this happy ever.
They have a nice home and Keely just got a new Nissan xterra. So we dont have to worry about what she travels in her car was nice but not big enough for all the equipment.
Please keep them all in your prayers.
May you all have a Happy wonderful Holiday season.
Luv,Julie

Thursday, September 30, 2004 9:20 AM CDT

Hello All,
Hope your ready for this update?
Micki has come a long ways and what a wild little one she is. To say the least. ha ha.
This little one is a stick of Dynomite.
He has therapy several times a week, ok now you must understand that she hates therapy. Her tharpist is male his name is Barry and at this point all you have to do is say his name and it sends Micki over the edge she will roll her lip down and pucker and cry and cry.
You see Micki doesnt want to work.......... Which has set her behind where she could be unfortunatly. And by that I mean walking. standing and sitting up good.
However she is so smart and I mean it she doesnt miss a single thing!
Ok you are wondering what she is up too.
She is talking she says lots of words now and she jabbers non stop she will answer you when you ask her questions. It is so precious and such a miracle.
She loves to talk on the phone now.
She loves standing in the stander but when you try to walk her she hauls her legs up and whines she just will not try it, we figure its cause it requires work..lol
She hates therapy as I said and almost always cries the whole entire time. we go and watch her she cant see us but we see her and it is pittiful however fake for there is not one tear! she gives poor Barry a run fro his money, he is so good with her too. Some days are better than others.
Now she loves speech therapy that is more like play to her.
Now I hope you are ready for this in speech a few weeks ago she kept getting the shapes in the right hole so her therapist would say"you got it" and out of the blue she said "I got it" very plain and said it 3 times keely was estatic.
Micki can do what Micki wants to do believe me.
We are on to her..lol
She eats every thing and loves food. Poor kid:)
she has gained and is really doing so well.
Now I have to tell you that she is very entertaining and will keep every one in stiches at all times.
Micki is off all meds now except her IVIG which she shouldnt have to have too much longer.
She has done so well and is such a miracle.
You have never seen a happier little girl she is going to show us all that transplant is the best thing.
She will not be with out her brother she wants him right there at all times and will tell you that.
She is not the least bit jelous of him in any ways and smiles when we hold him and holds he hands out cause she wants him to come to her. It is really heart warming to see.
Oh yes and she has Mark keely's signifagant other wrapped around her little finger. And trust me she loves him when he and keely went away last weekend she kept asking for momma and ark as she calls him. she doesnt like to be to far from them. Her Momma was proposed to last weekend on a beautiful mountain In Maine at sunset. She received a beautif ring and a sept.2005 wedding is being planned.
We are all So Happy for them both.
Hugs.....
Julie

Tuesday, May 11, 2004 8:41 PM CDT

Hello All,
Thought I would update the childrens pages before our trip as I havent done it in a while.
Micki is doing so good. I tell you she is a comedian and actress. She loves to entertain us and keeps us all in stiches.
She loves to make us laugh and what ever it is that she has done to make us laugh, she will do more of.
Latley her Brain is like a sponge taking in every thing and learning.
She can copy any thing in a flash and she knows she is smart she will giggle and laugh and show off all the more.
We get so much enjoyment from her.
This past week she has learned several new things.
Those of you going to N.Y will see and I gaurentee you will have to laugh at her.
She just blows our minds.
Micki now has an occupational therapsist comming to her house to work with her and speech will be happening we are just waiting for the girl to call us back.
I hate to admit this but it is so hard here to get services especially speach. But we wont stop until it is happening!
Micki jabbers on and on she is quite a talker. and these days every thing is momma or gaa for Grampa.
Now you wont believe this but the other day she said BITE IT! the "B" wasnt said it was sorta like ite it.
The therapist was there and heard it and she looked at me and said "did you hear that" I said yes and I was stunned.
Keely doesnt believe me but I told her she did it and she will say it again.
She hears Bite it alot because when she is having some thing to eat we will tell her Bite it!
Now incase you dont know she Loves Peanut Nutter Butter cookies. And will go through a package in now time and we HAVE to have them in both house at all times.
So we have to have plenty for the trip. we wouldnt dare go with out them.lol
She can roll over on her own and is so very close to sitting up that will be soon.
Now about walking........... this little girl is a typical 2 year old she has a stubborn streak and is very independant she could walk but she refuses to take more than a few steps.
For some reason she does not think it is a fun thing to do at all????
Some day with lots of patience we will see her walk I just know it as her legs are very strong.
Micki loves her Big Brother and is not jelouos of him at all and she just loves to have him near her and she will walk to him in her walker and try to brush his hair.
she has always done that and the minuite she sees him she wants to stroke his hair.
She also thinks it is funny when we are kissing Pie and telling him we love him. She lights right up.
Well Guess I have babbled on enough and it is late so guess we will get ready to go to bed.
Cant wait to Be visiting with you all at the Symposium.
Luv,
Julie

Thursday, April 15, 2004 7:03 PM CDT

Hi All,
My gosh I dont know where to start! Micki is changing so much these days. She copies every thing faces she loves to make faces.Today I asked her where Grampa was and she started waving bye bye. This little girl is so so full of life and Laughter she entertains every one.
I said I can picture it when she goes to school she will be the class clown for sure.
She thinks it is halarious when she does some thing funny and we laugh she will giggle right out loud and keep doing what ever it was that made us laugh in the first place.
She did have both front teeth surgically removed and breezed right through it. Poor thing she hates hospitials and Doctors all she has to do is see one and she starts screaming. Cant say as I blame her she hasnt forgotten that they all wanna poke and prod her.
She also got new braces to help her walk they are spring loaded so when she bears weight it will push her foot back up. The place that made them for her said they set a record they are indeed the smallest pair they have ever made. Keely said it reminds her of Forrest Gump and when she seen them on her she said RUN FORREST RUN!! Micki thought that was so funny.
We are hoping to go to the symposium again this year things arent final yet so we shall see.
I am hoping that we get to see every one. Last year it was so informative and I loved talking to others and learning new ways to cope with things.
I am also wondering who all is going this year? Maybe every one is not sure yet? I will update as soon as I have more news to tell. Please keep Pie and Micki in your Prayers.
God Bless.

Thursday, April 15, 2004 7:03 PM CDT

Sunday, March 14, 2004 7:54 PM CST

Hi All,
I have been having some problems getting this entry to show up on this page??? this is try number 3 and with any luck it will work this time.
It is hard to keep re typing it.
Micki is doing so good I hope you all will look at the new pictures they are great.
Let me see I will try again to tell you all that is new with this little girl.
Micki can stand for long periods now her legs are very strong now and her therapist thinks she will walk soon.
She was just fitted 2 weeks ago for new leg braces and they should help her some. Micki seems to be catching on to every thing so quick these days it is like every thing is comming together now for her.
a couple of weeks ago I sent Dr K two of the pictures the one at the top of this page and the one of her standing.
She was so pleased and passed it on to Dr. Escolar they both wrote back to me Dr. K's exact words were these pictures definatly tell a story! And Dr. E encourges us to send more of these when she is doing these things.
Micki did great in February at her 2 year post transplant studies the tests are great and all the Dr's were impressed!
Her MRI showed increased mylenation YEAH!!!!!!!!!
So once again we are so blessed. Micki is a true Miracle.
I do have to tell you all that Micki has to have surgery next Monday some of her teeth have to be taken out they have not done well due to the transplant and they are causing her pain. Please keep her in your prayers as she goes through this. We are dreading putting her through this but it has to be.
I guess I will close for now and see if this will upload on her page this time?
God Bless.
Julie

Thursday, March 11, 2004 6:27 PM CST

Hello All,
I cannot believe this but the other night I came on and updated and added new pictures only to find that it was lost some where in the cast universe? It didnt get put on here that is for sure so here I am trying it one more time.
I am not sure where to start there has been alot new with ourlittle lady Micki.
All her tests at Duke were real good and Dr.K and Dr Escolar and Sue were all so very pleased with how Micki is doing. Dr. K' exact words were that she has never seen Micki look this good she has gained weight and progressed so well.
Her MRI showed much increased mylenation. We are so pleased. Micki has been fitted to new leg brace orthotics to help her in standing and walking. Her therapist feels that she will be walking soon. She can now stand for long periods usually standing next to her Big Brother Pie's chair it is amazing to see I have added a picture for you all to see.
Also Micki is going in to surgery on the 22nd to have some teeth removed due to the transplant they have rotted and not done well and have to come out. We feel bad that she has to go through this but it needs to be done.
Micki is doing so many things it is sora like every thing is just clicking now and she just goes and goes and believe me when I say she has a mind of her own and is she ever independant!!!
We are so very proud of Micki and all she is doing what a true Blessing and a true Miricle.
Last week I sent Dr. K the latest Pictures of her standing and the one at the top of this page, and she wrote a nice not back saying these me a note and encourged us to do this as often as we can they like seeing the progress she is making.
I guess I will close for now and ask that you look at the new Pics and check out her brothers page too.
Pictures difinatly tell a story. You see when she is out there she will not show them all she can do the little imp just wont do it there..lol Dr, Escolar also wrote Also keep her in your Prayers as she goes through surgery soon.
Julie

Monday, March 8, 2004 10:25 PM CST

Hi Everyone,
It has been a while so here I am to give an update on our little Lady.
Micki is just comming in leaps and bounds these days and I have updated the pictures so you can see some of what she is up too for your selves.
There is alot going on with Micki right now she is going in for surgery on the 22nd to have some teeth removed that have gone bad from the transplant drugs. We feel so bad as she has already gone through alot and now to go through this too. This will be done out patient and hopefully she will do fine. The dentist told Keely they have a challange ahead of them because her formula has alot of sugar in it plus all she eats! She will have to go every two weeks for flouride treatments.
Now for the next thing she has to have braces for her legs and she was seen by that Dr. almost two weeks ago and they should be ready next week.
Now I have some really cool news.......
MICKI IS STANDING. yup I put a picture of it in the album and even since that was taken she has gotten better and can stand for a long time before as we say she melts a little.
Micki is very smart and if she isnt holding her head up good we just say Pick your head up and she does so with a grin.
This sweetie is so full of life and laughter it is truley amazing. It is like every thing is clicking right now.
I wrote to Dr. K and sent the pictures she and Dr. Escolar were so pleased and encouraged us to send more when she does these things.
Also Micki got a new stander and she is not sure what to think of that but does get in it. It has a tray on it and Keely and the therapist stand her in front of the T.V. I dont have a picture of that just yet.
I cannot believe how much she has grown and finnaly gained weight.
All the tests from Duke that we have gotten so far are great. She has increased mylenation. Dr K was so very pleased with her this time, she told Keely that this is the best she has ever seen Michaela look and thought she was doing wonderfully. YEAH MICKI!
We love hearing good things. She will go back in 6 monthes and they are now backing off the meds I am pleased about that. Well guess I will close for now and ask you to keep Micki in your Prayers as she goes through surgery.
Julie

Friday, January 16, 2004 9:02 PM CST

Hello All,
Gosh where does time go? Well I wanted to come and update you all on Princess Micki... and she is a Princess.
I wish you all could just see her going she is just a bundle of energy, constantly learning new things and jabbering more and more these days.
This child is full of the dickens she giggles and laughs at any thing and everything she loves it when I hold her and jog around the house with her.
She gets hysterical if I run towards her she will laugh right out loud. She is going better all the time in her walker although she prefers to go backwards, she hasnt quite mastered the forward thing yet.
She rolls over on the floor and gets to where she wants to go and gets what she wants to get.
Now its almost time for her trip To Duke, I cant imagine her being gone all week we will sure miss her.
Her and her Mom will fly out the first of the month all the arrangements are in motion now.
I think they will all be impressed out there.
Medically Micki has done well, Keely will have some things such as meds and her vision and definatly her cortical thumbs to dicuss with Dr. K. But quite honestly we couldnt be happier with all she is doing.
She is a Momma's girl but just loves to see Nannie and Grampie come over. And she sure is entertaining!!
I just love to hear her when I am talking to Keely on the Phone and she says Nana! so plain its unreal.
She calls Phil, Gaa and when he comes she gets so excited and she will look right at him and say "HI GAAA"!!!
I tell you this she is a true Miracle and we are blessed for sure. I will update again after her Duke trip Please keep her and her big Brother Pie in your Prayers.
Julie

Sunday, December 21, 2003 9:10 AM CST

Hello All,
I wanted to update the childrens pages before and after Christmas as I am sure I will have lots to tell and new Pictures to show.
Things have been busy here getting things taken care of.
Michaela has started therapy with a new visiting nurse company and the change of every thing has been busy.
We tried her in out patient therapy but that was not going to work at this time. She cried through the whole session and we were unable to get her to work with them at all.
Michalea does not do well with change at all and she is so scared of what people are going to do to her. I feel this is from having so much done to her since birth.
Michaela is so funny she has a schedule and boy dont mess with it!!
She is doing so much and it amazes us every day.
she is going good in her walker and yesterday made it to the christmas tree... and was taking things off of it.
she eats licorice and gets mad when it is gone telling her mom she wants more. I think you can tell from her pictures she is getting so big now we can hardly call her peanut any more.
Now this little girl is changing daily and she also has an attitude if she gets upset with momma she pouts believe it or not although it doesnt last long its kinda cute to see.
We can hardly wait to see what she does christmas with all the developmental toys she is getting.
Michaela does this startle thing with certain new things and they scare her? we bought her a mechanical cat because she loves our real cat but when you pat this cat it meows and the legs go she hates it! it scares her.
She will now allow it on her tray but dont touch it if it gets set off she stiffens her arms and screams.
So iam not sure what she will think of some of her toys we shall have to wait and see.
Phil and I are going out to Keely's early christmas morning to spend the day there. It is impossible to even think of taking the children out and all the gear.
We are so looking forward to it and My son and his wife and our granson Jacob will be there also. Michaela love to have him over she loves to play with him and have him around.
Michaela goes to her Doctor in Portland tomorrow and then to Duke the first part of February and I know they will be so impressed with how she has come along. I am so hoping they can get her off some of these meds she is on that scaresme so to think she is still on so many of the bad ones. so please say a Prayer that Dr.K is able to get her off some of these when she goes out.
Well guess I will close for now and update after Thursday.
Please all of you have a wonderful Holiday season safe in the comfort of family and friends.
Luv, Julie

Saturday, December 6, 2003 8:09 AM CST

Happy Birthday, Sweet Miracle Michaela,
Today Michaela turns two and what a wonderful time.
Michaela has a new life thanks to her Stem cell transplant.
I have never seen such a Miracle she is growing and changing daily. It seems every day brings some thing new and exciting for her.
Micheala has done so well and we could not be happier with her progress at this point.
At this time she rolls over and says nana, momma gaaa(grampa) that is how she says it:) and you wont belive this but the other day when her therapist told her to pick her head up just as plain as you or I she said no! I was there and I could not believe it. I have not heard it since.
Her head and trunk control is so much better and she now walks in walker and boy does she think she is all that.
She eats any thing and every thing and if you are eating some thing she has to have it.
Of course she loves her Big Brother Pie and has to be with him all the time, I am really surprised she doesnt say Pie yet but I am sure she will soon.
Michaela also lets us know if she wants some thing if you ask her things she will answer with a smile and a giggle if she wants it that is a definate yes.
We celebrated her Birthday last eveining at her house, and all had a good time she was so tired by the time it was over I am betting she slept all night which is some thing she never does she is a true insomniac.
I cant believe how active she is, those legs go all the time now and those hands are in to every thing she can get, her thumbs may still be contracted but she gets every thing and it all goes to the mouth.
We all just marvell at all she can do and she wont except help she is very and i mean very independant. I think that is a good thing too. It wont be long now and she will be going to Duke for her check up I just know they will be impressed. Well guess I will go for now and update the Pics too as well as Pies page. Please check them out soon and sign the guestbooks.
May God bless you all and have a safe and Happy Holiday season.
Julie

Monday, November 3, 2003 2:11 PM CST

Hello All,
Just wanted to do a little update on the childrens pages.
I like to try to do this once a month if I can.
Well Micki is doing Good although she gave us quite a scare last week.
she was not acting like her self and Keely knew right away some thing was wrong. She was real lethargic and wanted to sleep so Keely grabbed her and ran to the emergency room while I stayed with Pie.
Her blood sugar was 25 which is dangerously low.
They hooked her up to I'v's and did all kinds of blood work and called Dr Hurwitz,
It seems that because of the steriods she is taking it has caused her adrenal gland not to work, they tell us it will work again but the steriods are telling it not too?
So now Keely has to take her blood sugar 4 times a day.
It seems to go up and down. Keely was up at 2:30 one morning feeding her peanutbutter and Milk.
So far she is doing good and she goes to clinic again soon so I am sure they will be discussing this.
I wish they would or could get her off some of these meds it really worries me that she is still on them this long I would think they could be weaning them. I guess it is time to call Dr. K and get her input on this.
Micki is so full of it and she also has insomnia due to the meds she never wants to sleep and is up all hours of the night. Keely says she doesnt want to sleep. Even during the day she is a hard act to follow she wont nap.
She has started going to out patient O.T & p.t now but they are easing her in to it so she still has Tina her home therapist right now too. Personally Tina is great and she is attached so I am not sure she wants to totally give her up.
Micki got new hand splints they are to keep her thumbs out and they are just neoprene and they are great. The occupational therepist has to adjust them though as one is to tight in the thumb. She doesnt quite know what to think of them.
She loves to eat and we have not seriously found any thing she wont eat. If you are eating she wants it! Tuna. Egg salad, any veggies well just any thing...lol
She is finnaly gaining weight and doing well that way.
Oh and she loves lollipops and can now get them to her mouth and hold them there it is a riot and she will use her tounge and lick them and talk to them:)
She loves animals and we have a cat and after all this time she is finnaly getting to know him and she thinks it is so funny when he meows she laughs and laughs.
She says nana, momma and gaa for grampa. and Hi of course.
As you can see for Halloween she was a fairy God Mother and loved every minuite of dressing up and all that what a hoot!
We have so much fun with her and there isnt a minuite go by that we do not realize how much of a miracle she is.
I guess I should close for now Please keep Pie and Micki as well as all of our Krabbe Babies in your Prayers.
Julie

Sunday, October 5, 2003 11:53 AM CDT

Hello All,
It has been so long since I have updated Micki's page.
Our lives have been so busy these days.
Micki is changing daily she is a live wire to say the least. A micracle she is for sure and I think of that every time I see her and play with her.
Micki rolls over now and gets her hands to her eyes and nose and well any where she wants them to go. She is so smart she learns very quickly all you have to do is show her once and she does it. It is so amazing to us.
She jabbers non stop and says nana all the time and if I am not right there she hollers to me NANA! She is so close to her big brother she wants him right with her all the time, and he usually is.
Micki is going to be going to out patient O.T . P.T and Speech therepy. Yeah we finally got speech therepy, we are very excited about this. Dr.K has said it is fine for her to go out patient. Her therepist says it will be better for her as there is more to work with in that setting.
Micki is getting new hand splints for her little hands as she still wants to keep the thumb in. They should be in soon and should help alot. Micki waves bye bye and says Hi to every one now adays, and if her Momma goes to work and I ask her where Momma is she will wave bye bye.
We have so much fun with her and all she can do.
It seems weird to think she will be 2 in December. And I just know this little girl is going ot walk her legs are so strong and they are working with her standing on them she hates it but she can do it.
The latest thing is Micki doesnt sleep well at night any more she is up all hours and doesnt want to lay down to sleep? I looked up all her meds and every one of them causes insomina with a bunch of other bad side effects we want her off these meds and she should be we are going to talk to the Dr's again about getting rid of them.
I am going to go now but I want to ask you to keep them in your Prayers as well as little Noah Pricard who is fighting for his life as well as his parents who need support.
check out the new pics.
God Bless,
Julie

Tuesday, September 9, 2003 11:05 PM CDT

Hello All,
It has been a while so I wanted to come and tell you all about our little Princess Michaela.
She is a wild woman, she is now rolling over and scooting across the floor, yep she is going in leaps and bounds.
She loves playing copy cat too. She is so happy and full of it. she has actually been doing better with Physical therepy and Tina her terapist is so pleased with her progress. Her head and trunk control is so much better.
she has very strong legs and I just know she is going to be able to walk.
Her therapist is working on her standing. Micheala hates that part of the therapy she does not find fun in trying to walk, she can stand but seems to tire very easy.
You all know she got glasses back in February well miss Micki has learned how to remove them she gets her right pointer finger in a crooked position and yanks them right off looks at us and grins like yeahhhh i did it!
She thinks this is great fun.
We are wits end trying to keep them on her the minuite we put them on her up goes the hand in full postion to take them off. and we use to be able to put some thing in that hand to distract her well not any more, she just drops it and takes her glasses off. Any one have any hints she really needs to wear these.
Micheal talks a blue streak constantly babbaling and yelling at us "happily" She is a laugh a minuite except for the glasses deal.
She eats every thing in sight I havent seen one thing she doesnt love. She has gained a little over a pound now and I suspect she will be on the rise, she is going to be tall too she has legs like a model..lol
Well I suppose I had better get to bed it has been a long day. Just wanted to update you all. Please Keep Micki and her brother in your Prayers.
God Bless.

Friday, August 1, 2003 9:07 PM CDT

Hello All,
As most of you know Michaela and her Mom have been in North Carolina all week.
We miss them so it has been too quiet here with out little Micki.
Micki has been down there showing off to all the Doctors.
I told her before she left to go show them all she can do and I guess she did just that.
Dr Kurtzburg & Sue Wood along with Dr Escolar were all very pleased. DR. K said she couldnt believe how much more she was doing now than 6 monthes ago.
We havent been told the results of any tests yet everone just says she is doing great?
I know it takes time to get the results back so I will update you all as we gett them back.
Keely is very happy with all the comments they made and every thing was very positive. Thank God.
Keely had a wonderful time and she so needed that with all that is going on in her life it was nice for her to go away and be with friends who know what she has to deal with and she just got to unwind and laugh and I am so thankful to every one for helping her and showing her a good time while there.
Keely got to go see baby Degan Miles and she said she just wanted to bring him home... he is so cute.
and Elija well he and Keely hit it right off she fell in love with him.
As for me and Grampa we had a good week"check Pie's page out!
Please keep Micki and her mom in your Prayers as they leave tomorrow for Home. God Bless you all.
Julie

Sunday, July 13, 2003 11:44 PM CDT

Hello All,
First and foremost a very warm thank you for all being here for us this weekend the wonderful e mails and calls have helped us so much. You are all family and when the times get tough you are all here. Thank you.
As you know Keely had to reschedule the Duke trip for another week."Thanks Keely for you help with that"
She didnt want to do it but it had to be done for now.
Now for a quick update on Miss Michaela. As you can see from the above photo she got her new kid kart, She looks so cute in it sitting right up there she is such a peanut:)
She really loves it too. They wanted her to have one for postioning and to help her trunk gain support.
She is doing so much these days. She loves to be a copy cat and catches on real quick. While baby sitting her latley I have tought her to to do one of the hand motions to itsy Bitsy spider and it is a riot. She is so proud of her self for doing it that she laughs and smiles all over after she does it.Now all we have to do is start to sing it and she does it right away.
She also says HI..... Yep we are so excited she says Hi to every one now and any where. She also waves bye bye.
Another thing, she is learning to use her legs so much now and we have tought her to push them up against us. we just say push when her knees are flexed and she pushes hard and laughs.
We are so excited to see her doing all these things,
We know we were granted a miracle and we know Micki will progress and do all the things she wants too and believe she is a go getter. A Happy little girl full of Love and expression. We couldnt be happier with her, she is doing great.
Please keep her and her Big Brother and Mom in your Prayers. And thank you all for your Love.
God Bless
Julie

Thursday, June 19, 2003 9:35 PM CDT

Hello All,
I finnaly had a night off so thought I would update the childrens pages.
The Picture above is one I took the other day, Micki just loves books and here she was reading to her big handsome brother Pie. Although he doesnt look really that interested he was before the picture was taken at just the moment I was to take the Pictute he wanted me to pick him up and he started to fuss. I do however love this as it shows how they love one another.
Micki loves to have her Big Brother right beside her and gets so excited if you bring him to her, its really precious to see.
Well now lets see Micki, she is something else really she is so full of it and today was Occupational therapy her therapist Bob is a real nice guy and just loves Micki.
But I hate to say it Micki is giving him a hard time and a complex, she hates O.T!!! Micki's thumbs are not wanting to come out they are very tight and we are very concerned about it and have been. He is trying diffrent things and she screams the whole time. She was fitted yesterday for bilateral hand splints for night time only.
We are in hopes this will help her and also many times a day we must work and stretch her thumb.
Luckily it hasnt stopped her reaching and grabbing for things she can get a hold of any thing and loves to spill things on her High chair tray.
They have ordered her a new Kid Kart to help with her trunk control and postioning. She really does need this and we are hoping it arrives before her trip to Duke.
Micki is scheduled to go to Duke the week of the 14th of July. Just her and Mom are going.
Keely is looking forward to seeing Dr. K Dr. Sue and Dr.Escolar. AND KELLY OFCOURSE!
I think they will be impressed once again.
Her Dr here has decreased her Prednisone again and she is tolerating that well now.
We are Praying Dr. K will get rid of all that stuff once she sees her In July, that is the plan as far as we know it.
To date Micki has 4 teeth 2 up and 2 down. She continues a rigorous Physical therapy schedule and does well with her leg strength she can bear weight for longer and longer times. I hate to say it but Micki does tend to not want to do things hmmm mom says she is a little lazy and if it requires work Micki doesnt want to do it much.
But nannie thinks it is tiring for her too and maybe makes he muscles hurt.
After being at the Symposium and seeing the transplant kids I have such hope and I pray so hard we will see Micki doing all those things they do.
Well I have yacked on and on here as usual but thats me!
Please Keep Micki and her Big Brother Pie close in your Prayers.
Praise God For Noah Prichards return to the Bone marrow floor and his victory of comming of the ventilator. Prayer works Miracles and I ask that you will continue to Pray for him.
Also another precious newborn, Degan Miles is Preparing to go through Transplant he is so sweet and I ask that that we all keep him and his Mom and Dad in our Prayers.
God Bless.
Julie

Sunday, June 1, 2003 9:27 PM CDT

Hello All,
You must have all thought I got lost....
Well I just let time get away from me some times.
As you all know we attended the 6th annual Hunters Hope Symposium in N,Y. and had a wonderful time.
It was so wonderfully done, the H.H. staff did a wonderful job with every thing.
We got to meet so many that we had been wanting to meet and talk with. It was all so informative and interesting.
I cant wait till next year.
It was nice to have Angel Edens Mom and dad to Fly out and back with and they were alot of hep...Thanks Tiff and Ron.
Michaela seemed to enjoy all the attention too and she did very well. The only thing was she doesnt believe in naps and especially while we were away she just wouldnt sleep so she got way over tired.
She enjoyed the food and ate every thing she could.
Michaela is learning more daily and we are Praying for her to do all things any other child can do.
It was encridible to see all the transplnt children there and all that they have accomplished.
It was so heartwarming and enjoyable to wittness.
All 7 newborn transplant children were there.
Michaela really enjoyed Samantha Camarata she thought Sam was all there was she just loved having her around her.
Micki got lots of attention from every one and delighted all with her smiles.
Micki has been doing well and they are going to increase her Occupational therapy and we are happy about that.
She is talking more just since we got back from N.Y she says words more clearly she says Momma Dada and Nana so Plain and loves repeating it as often as she can,
She is getting so good with her hands she can get any thing in her reach now.
She just loves books and acts like she is reading them she turns the pages and every thing...tooo cute!
She absoultley loves her Brother she is never jelous of him and gets so excited when you walk towards her carrying him.
If we put her on the floor to play we have to put Pie there with her so she will play and practice rolling over or she wont stay there. If he is there with her she will stay and holler at him and try to get him.
She loves to rub his head.
Micki is gaining real good leg strength and we just keep seeing little improvements.
We are so thankful for this little Miracle and any one that has met her knows she is sooo ful of it.
Micki is an absolute little wild woman and we just love it.
Please Keep Her and her Brother in your Prayers.
And please Pray extra hard for little Noah Prichard at Duke as he struggles in his fight against Krabbe.
He is such a brave little guy and so sweet. We pray for God to heal him.
Luv, Julie

Tuesday, April 22, 2003 9:27 AM CDT

Hello All,
I wanted to get the kids pages updated today as I havent done that in a while.
We hope you all had a wonderful Easter, we had a wonderful day together.
Micki is doing wonderful and gaining skills daily.
Every day is a new one for Micki she does so many things, she is getting real good with her hands now and gets any thing in her way. She does however still keep those thumbs tucked and they are woking with her to improve this.
It doesnt stop her though she uses the rest of her fingers to get every thing! she dumps food and drinks over if they are in her reach and then she plays in her mess.
She is very vocal she as you all know says nana and is now learning da da she has always said maaaa.
I know I have told you all but Micki is so full of herself.
You will get to see that soon in New York.
We are so anxious to get there and see every one.
They are continuing to decrease her steroids and they are getting less and less. Her cheeks are starting to get smaller again. Se only goes to clinic once a month now.
She goes to Duke in July I know they will be impressed once again. Micki's therapist is getting her to stand now with help but this is such a big step as Micki hates being stood up. And her trunk control is real good now.
she holds her head right up now and keeps it there, she wanst able to do this before.
Another one of her latest tricks is she copies you if you do any thing with your hands or arms in front of her she will copy you, It is so cute.
And Micki loves to eat! I havent found any thing yet that she doesnt like. She also has 2 new teeth now giving her 2 on top and 2 on the bottom.
One thing that is bugging us is that she is scared of alot of diffrent things she will posture and make a real funny face and scream, ok get this she is scared to death of bubbles? and certain toys that do things too.
Then the other day I got her a special thing for tactile stimulation for her hands we didnt even get to try it and she was posturing and started screaming! and she wants it out of her site fast! there are quite a few of these episodes, with diffrent toys or diffrent objects. If any one can shed any lite please do its very strange?
Well I added some new Pictures of the little ham. Please continue to Pray for Micki.
Noah Pricard is having a difficult time and needs lots of Prayers too.
God Bless,
Julie

Tuesday, April 8, 2003 6:31 AM CDT

Hi All,
I finally get to sit a minuite to update the kids pages.
Micki is doing great she is the biggest bundle of pure deviltry you have ever see.....
She is full of her self and is gaining more skills daily.
Last Wendsday he went to clinic in Portland and Her Dr was very happy with her. He said she was even more limber and better than when he had seen her a month ago. So we were delighted to hear that. Also they are conitnuing to wean her off some of her meds so that is a good thing.
The nurses love her and played with her and Micki is getting to be a copy cat she tries to copy every thing you do and also I have noticed all we have to do is show her some thing once and she does it.
I just love to watch her do all these things it is a true Miracle.
She is gaining on her trunk control and conitnues with P,T and O.T weekly.
Micki and her brother along with thier parents of course plan to attend the Hunters Hope Sympsoium in May. This will be a good trip for them, as they will get to see so many friends there.
Oh before I forget to tell you we got to meet Fran & Kyle Forslind at clinic last week so that was very nice Kyle looks wonderful. Keely and Fran visited for a while so that was nice. I have added some new photos so you all can see what a little devil Micki is:) Please conitine to Pray for the babies to stay well and do well. And remember little Noah Pricard who has some hurdles to jump.
Julie

Sunday, March 23, 2003 2:50 PM CST

Hello All,
Hope this update finds you all doing well.
Micki is changing more every day. It seems she learns more daily. She is so happy and full of life it makes us aware of what she has been through to get here.
Micki is still having therapy 4 days a week and this also includes Occupational therapy. We are so proud of all she does. Micki and her brother got a new dog named Baxter and she loves him he is 3 and his owners were sick and could no longer keep him. Micki's dad just loves dogs so home came the dog. Well I was leary at first but he is a wonderful dog. He is very calm and loves kids he does tricks and the kids both seem to love him. Especially Micki who will giggle and giggle when he jumps to retrieve a toy.
Micki is like her Big Brother Pie and loves to go for rides today she went to the store with her mom and I and what trip she happily yells and sings all the way in to town. She especially loves to check the toy isles out and lets us know which toys she doesnt like by screaming because they scare her some times? We dont know why but some toys just send her in a frenzie. Her favorite toy is still the barbie boom box that is a riot to see her play with that as she gets it now and holds right on to the handle. She also loves story books of any kind.
We couldnt be more blessed than we are we love these babies and this transplant was such a miracle. Not a day goes by that I dont thank God and all who were involved in this special Miracle. Michaela is so full of life and smiles she is always smiling:)
Please keep them in your Prayers.
Dont forget to check out the new Pictures.
Julie

Tuesday, March 11, 2003 10:05 AM CST

Hi All,
I'am finnaly getting time to update the kids pages today.
It has been a long week the babies have both been very sick with that stomach virus.
They are both feeling better now it has been a slow process for sure.
Micki is doing more daily she kicks now, and loves to show off this new thing she can do she thinks its funny if she is laying down to kick her leg and reach one of us.
She can see so much better now with her glasses that we can see a huge diffrence since she got them. She reaches more and plays with more things too.
A couple of weeks ago iI bought her a Barbie boom box and it has pretend cd's and tapes with it and it plays really silly pre loaded songs. Well she loves the thing it sits on her high chair tray and plays and she laughs and trys to push the buttons on it. Iam what they call nutty nannie so when Iam there and it is playing i jam out with her and she just laughs at me so it is a riot.
She even trys to sing now when I play her itsy bitsy spider song on the computer. I have never seen a kid so full of it honestly she is so fun. She was up here the other night just chowing down on mashed potatoes and gravy"we know she is from Aroostook county now dont we"??
Since being sick she loves pop sicles and jello now too.
Micki is doing real good with occuapational therapy and her therapist is so good and he just loves Micki. He is working with her hands and thumbs right now.
I wish you all could see her. Iam going to close now as I have to go to work and I could go on for hours about these babies they are my whole world. I love them so much I could just burst thats the only way to describe it!:)
I send love to all of you, and again ask for more Prayers for these babies.
Luv, Julie

Thursday, March 6, 2003 6:21 AM CST

Hi All,
Well it has been quite a week, Both children have been sick.
Micheala came down with some type of a Gastro intestinal flu.
She had vomiting and diarreah for 3 days and yesterday still was not really over being sick, she was fussy most of the day.
I hate to see them get things like this and we try so hard to make sure they are not around sick people and still they get it?
Well we heard back from Dr Kurtzburg about Michaela's fimal results on her tests and WOW, Dr K's exact words were"I was very impressed woth Michaela's progress" especially from the last visit to this one!
She said her enzyme level is 3.6 which means she has a Normal Galactocerebrasidase Activity. So Micki has a normal enzyme level.... We are so happy. Also her labs were all good and she is 100% donor cells.
We couldnt be more pleased!
Michaela does so much these days. I kept her here yesterday so Keely and Pie could get some rest. Grampa and I had a ball with her she still wasnt feeling real good but she let me do her nails she loves having them done and then we played silly songs that she loves on the computer.
The minuite she hears her song start playing her head goes and she is grinning from ear to ear, she gets so excited.
Michaela is so much fun and she is such a ball of fire.
You can just see her wheels turning and she will have this look on her face like "ohhh what can I get in too or do next?? Yesterday when I was doing her nails she was trying to learn to blow on them like I do but she was making a panting noise....tooo funny!
Micheala is just so full of it I sure wish you could all see her. Well I guess id better close for now I have alot to do today, and I must get down to see the babies this morning.
Please keep them in your Prayers.
Julie

Thursday, February 27, 2003 12:20 AM CST

Hi Everone,
I had to update and add a new picture of Michaela in her new glasses.
They came in the other day and so here she is still beautiful and charming. whats better is that she doesnt seem to mind them at all.
They seem to be quite strong to us so i can imagine that she can see so much better. We had to get her a strap to hold them on as she really doesnt have much of a nose.
Micki had clinic yesterday in Portland and all went well.
They are taking her off the cyclosporin and decreasing the prednisone again. I will be so glad when she is off that one. She now only has to go to clinic once a month and that in its self is a blessing.All her Doctors seem really pleased with her and I pray for things to continue in this path.
Micki amazes us daily with new things, today while having therapy she was standing holding on to a stand and the therapist said she was just helping support one oh her knees so that was so thrilling to hear. I wasnt there to witness it but wish I had been.
Another thing is Micki will now hold her arms out and up when she wants to be picked up, That I just love to see.
This little girl is always happy and never wants to sleep.
She is like the energizer bunny she keeps going and going until she is so tired at night she just passes out.
Something else she does that is so precious is when you put her down to where Pie is she strokes his hair so gently and talks to him. Iam going ot get that on tape.
well once again it is time for me to go to work so I will go for now. Please keep the babies in oyur Prayers.
Julie

Sunday, February 23, 2003 7:50 AM CST

Hi Everone,
I thought I had better get these kids pages updated before going to work today.
Micki is soing great and funnier than ever, I have never seen a little person so full of it!
Micki just goes and goes, she doesnt believe in naps nos siree! she is an early riser too.
We are not sure where she gets all this energy but it is really wonderful.
She is VERY vocal and she laughs so much she is a happy one:)
Phil and I kept both babies while mom and dad went out for a while the other night and it was a riot and sooo much fun. I had given them both a bath something I really enjoy doing, well Micki had hers first and so when we were done I gave her her bottle and went to get Pie for his bath and she just as plain as day sayd Nannie twice. I guess she was trying to tell me she didnt want her bottle she wanted me to play with her some more.
Micki will be going to get her new glasses tomorrow, I cant picture her in glasses but Iam sure she will look cute.
Keely and Kris took her to pick them out and Keely says mom they are so cute on her?
We couldnt imagine them finding any she really has no nose bridge and she has these huge fat cheeks...lol outghta be cute! I will post pictures as soon as she comes home with them on so be watching.
We are so very pleased with all her studies as were Dr Kurtzburg and Dr Escolar. They both told Keely they were very impressed and pleased with Micki's progress.
Well I suppose I had better go get ready for a long day at work. I will update again soon with new pics of both children. Please keep posted. and keep them close in Prayers.
Julie

Sunday, February 23, 2003 7:50 AM CST

Thursday, February 13, 2003 8:57 PM CST

Hello All,
I wanted to update. The Duke trip is winding to a close and I will be ohhh so glad to see my Princess Michaela On Sunday. They will get home late Saturday night so Iam waiting for Sunday morning.
Micki has done so well in Durham on all her tests we are so happy!
Today Micki had an EEG,ECHO,PFTS and the visit we have all been waiting for with Dr Kurtzburg and Sue Wood.
Dr Kurtzburg was very pleased those were the words keely used when she told me.
To hear all the excitement in Keely' voice tonight was so delightful. She said Dr K held Micki for a a few minuites and then Micki was fussy do to all the testing today.
She said she grinned at them and stuck out her tounge which she does regularly...lol and she made all her vocal noises for them. So I guess to sum it up they were impressed. Keely told Dr K, that Micki had improved so much after getting her porta cath out in November and she said she felt that Micki had an underlying infection that wasnt showing up on the cultures so there for she hadnt been well for a while before that. Keely had felt this right along so she was glad they were in agreement over that and also Dr, K felt she had improved since she was there last.
Micki has one more test tomorrow afternoon and then she is done. Oh yeah before I forget her nerve conduction test had also greatly improved. The plimanary MRI looked good to of course we will have to wait for the full results in a few weeks from now as the take time and have to be read by a special Dr.
This is such a Blessing for us to hear all positive things.
Dr K also told Keely that she thought Micki would look cute in glasses.
We are also happy to say that Micki will now be able to have her Grampa feed her all the ice cream she wants and yogurt too:) Oh boy will we be having fun introducing all those things to her. She loves to eat.
Well I will close for now and update as she gets ready to come home on Saturday.
Love to All.
PLEASE SIGN THE GUEST BOOK:0

Thursday, February 13, 2003 8:57 PM CST

Wednesday, February 12, 2003 3:26 PM CST

Hi Everyone,
Just thought I would update you all on Michaela's studies thus far.
Yesterday she went to see Dr Escolar at the developmental learning center.
We are so pleased with those results Micki really showed off and did all her things for them, she layed on the mat and picked her head up got her rattles and cooed,babbled and Keely said "mom you wouldnt have belived it"!
Dr, Escolar was so impressed and pleased and told Keely so.
And Dr Escolar is a wonderful Dr I thought that the first time we met with her and she doesnt pull any punches.
So we are very pleased with that. so Far Micki has had a brain scan and MRI and a nerve conduction study. We do not however know those results yet. Keely and Michaela have a meeting with Dr Kurtzburg tomorrow afternoon and I assume she will have some of the results in by then.
Now for todays news. Micki has had problems with her left eyy being lazy for many monthes now and last time she was at Duke they said they thought it would improve and if not they would do some thing to make it better.
Well today was the appointment and I just got a call from Keely Micki lynn needs glasses:( she is very far sighted according to the Dr. and she is concerned about it. and with out glasses she could go blind in that eye. We dont want that so we will go Monday and pick out a pair.
She is beautiful and Iam sure she will look pretty in glasses.
Iam Praying that all her tests come out good Iam sure they will she is so amazing.
Keely says that Micki hates being away from home, she is not dealing well with it and is up several times in the night. Micki is use to her routine and hates any changes.
I guess she is constantly asking for me...lol I love to hear her say nana.
Well I guess I will close for now and write more as I know it, probably by tomorrow night I will know more about some of the results and will plan to post then,
Please keep Micki in your Prayers.
Luv,Julie

Sunday, February 9, 2003 11:01 AM CST

Hi Everone,
Miss Micheala and her Mom arrived safe and tired in Durham,
yesterday at supper time.
Kelly so graciously picked them up at the airport and shuttled them around. THANK YOU Kelly! :)
Keely said Micki did well, not sleeping until the last leg of the trip.
Micki just loved the plane Keely said she loves take off and kept laughing and squeeling. This little girl is so full of it.
And something else that pleased me is I guess she kept saying nana nana nana all day yesterday.
The other day when we took her Brother to Bangor to have his procedure done we had a wonderful surprise, we were walking down the hall to radiology and just happened to meet Noreen, Noreen is a transplant grandmother also and she reconginzed Micki right away and came back to intorduce her self. I was so delighted and we had a nice chat, she has been visiting the kids sites and is also from Maine her grandson, Reece had a cord blood transplant in Dec at Duke and he is so sweet I went to his site.
Reese has Hurlers. I will be keeping in contact with them I was so glad to meet Noreen.
Iam already missing my Princess Michaela!!! They are all settled in at the Ronald mcdonald house and Keely says that Micki isnt doing well with the change in her schedule and Iam sure she doesnt know what to think.
Keely is anxious to get every thing over with and we are all Praying that the comes through every thing with flying colors! I told her to be sure and show her stuff!!!!
This week is going ot go incedibly slow for all of us.
I know that Keely and Micki will be missing home also.
Please keep them in your Prayers as always.
God Bless you all.
Julie

Sunday, February 2, 2003 1:03 PM CST

Hello All,
Just thought I would us this real stormy Maine day to update my babies web sites.
We are having a blizzard out there today and every one is in side. I kinda like days like this I get more done.
So far today I have been down to see Pie and Micki two times and Iam sure I will be down there again.
Plans are all finalized Keely and Micki will leave on next Saturday for Durham. Although Keely doesnt like being away from home she is anxious to see Dr K and Sue and of course Kelly.
Kelly has been such a wonderful friend to us and helped Keely get her plane tickets too.
I really feel they will like Micki's progress she is doing great and she is learning so much. she now will reach to give me her rattles if i say "Give nana a Bite she will put the rattle right up to my mouth.
For us this is so exciting to see her learn new things.
She seems to catch on quick too, some times all I have to do is show her some thing once and she will mimic me,
We are going to try to make a short vcr tape for Dr Kurtzburg to see her in her own inviroment and what she can do.
If Micki isnt getting some ones attention she is sleeping... She loves to yell at us and laugh and she coos all diffrent sounds.
Last week she hated therepy every day and they have now increased her therepy to 4 times a week and she will be getting an O.T. evaluation as well as speech therepy.
Keely wants to dicuss all this with Dr Kurtzburg.
Micki has always loved bath time and when she is in there now she uses her hands to knock things over like the soap and shampoo and we set them back up and she knocks them right back off again.
I think I also told you all that she loves the dropsies game she will drop her toys and wants you to come get them.
This is such a wonderful miracle to witness.
Every day here is busy and we just love these children I love watching them do things. I will update again soon Please check out the new picture and again Please keep them in your Prayers. God Bless you all.

Sunday, January 26, 2003 at 07:43 PM (CST)

Hi All,
I just had to update!
We had a wonderful weekend we travelled to my moms to have some very special company. Miss Kelly from Durham and Tiff and Ron from southern Maine, all came to my moms to visit us all on Saturday evening. It was a wonderful visit and so nice to see them all. I just love our Krabbe family:)
We really had a nice visit and Micki showed off for them even though she was so over tired.
You see Micki doesnt believe in napping during the day no sireee she hates it and fights sleep till the bitter end.
By the way I want to thank all of our new friends comming to the kids journals we have so enjoyed it. Big Hugs to all of you who care enough to check in. Some may not realize it but it really means alot to me us all to see that some one cares enough to shay hey" i want to check up on the kids" I too have made a vow that Iam going to check in on all the kids every week and write in the guest books every time they are updated. Families need this support and it sure puts a smile on to see that some one signed the guest book. Thanks All.
Well Micki and Keely have to be in Durham the week of the 9th of Feb.
Iam already dreading it as I will miss her so bad. she is nana's princess and she says nana when ever she wants me or whenever she doesnt have my attention.
Miss Kelly and Tiffany couldnt believe how big she has gotten since they had last seen her.
I think that she will please the Duke team when she gets there thats for sure.]
I pray that all her tests come out Great. Also that they will start decrasing these meds she is on.
I guess I will close for now and update again soon. God bless you all. Julie

Tuesday, January 21, 2003 at 06:27 AM (CST)

Hello All,
I had some quiet time this am and thought I would update the childrens pages.
Maine feels like the artic right now and has been very cold for a few weeks now.
Micki has her first cold she has a running nose and a cough.
Keely called her Dr and took her to the peditrician and she said it is a cold no ear infections, thank goodness.
Micki weighs 20lbs now!!! and I suspect some of this is the prednisone she is on? Her cheeks couldnt possibly get bigger for they would burst.
Micki continues to amaze us daily with new things she can do. She is getting so much better with her hands and loves rattles or any thing that can make noise.
She has wonderful leg strength and loves to be in a standing position. we do however have to keep working with her trunk control.
Micki is so full of her self and she yells at us and laughs and well she is just a happy little girl.
Its just as if she knows how much of a true Miricle she is.
These days she loves her walker and her excersaucer oh yeah and we cant leave out her high chair she love to sit in there and play too. Her mom puts some of her favorite toys on the tray and she reaches and gets them and she bangs on it too. when ever she gets cranky or just wants attention "which is never far" she says na na....
I just love that of course.
Micki just loves her big brother Pie she talks to him smiles and just loves to be near him when ever she can.
Some times when he cries she will cry.
Micki is awaiting her trip to Duke, she is anxious to see Dr K and show her all she can do and of course thank her for all she has done. Keely should be hearing in the next few days of the date she will be heading out there.
It so hard to belive that she is a whole year out and a year old!!!! It hasnt been an easy year but we have been so blessed.
Life is very busy around here as you all can imagine but I love the time I get to spend with the children they are our whole life.
I took tahe 3-11 shift at the Hospital so I have more time with them during the day. It is working out so much nicer.
I cant wait to get out of bed and see those little mugs.
Belive me I get down there to thier house soon as I can to play with them and of course get all the kisses I can.
Before I go I just wanted to ask you all to say a Prayer for the Forslind family who lost their oldest son Mitchell to this horrible disease. Mitch lost his fight this past Saturday. Iam sure he is not in pain any more and I too am sure he has met his heavenly Krabbe angels to play with.

I have added some new pictures I thought you would enjoy seeing. Please keep the babies in your Prayers.
God Bless you all.

Thursday, January 09, 2003 at 03:51 PM (CST)

Hi Everone,
Micheala went to her clinic visit yesterday and all went well.
She is 18lbs now and what a little chubby! Her Dr called her pebbles he said she looked like Pebbles Flinstone her mother had a piece of her hair sticking up with a barrett in it and thats what made him say that.
Michaela is so much fun she learns to do more daily and keeps us all on our toes.
Right now she is in to knocking everything over she loves it and thinks it is great fun to make us pick it all up so she can do it again.
She gives the biggest kisses and she is always smiling.
she is learning to sit up, she still needs work as far as her trunk control.
Her therepist says she is doing much better and she never cries now during therapy.
Her legs have alot of strength but with Micki its that head and trunk control but she is doing so much better.
she holds rattles and can get them to her mouth now and she yells at them too"the rattles" as if to tell them shes going to get them. Michaela is due to go to Durham they had wanted her there Jan. 13th but Keely wasnt expecting that early of a date so she called them and they are going to reschedule her for February around the 9th as far as we know right now.
I think they will be quite impressed with our little lady.
They have decreased her prednisone and will continue to do that, they will decrease a little every week. They had increased it when she was so sick to get her through the stress of every thing else and I think that is what made her so chubby.
Michaela will be one year out on Saturday the 11th!!!!!!!
We are assuming that Dr K. will take some of these meds away too when she goes to Durham in Feb.
I can tell you we are glad that she is going to be one year out. It has been a wild year but what a Blessing also.
We have a happy little girl who is growing and learning and that is a true Miricle in its self.
Please keep Michaela and her handsome brother Pie in your Prayers, as well as all the little ones who fight this devestating disease.

Thursday, January 09, 2003 at 03:51 PM (CST)

Tuesday, December 31, 2002 at 10:48 AM (CST)

Hello Family,
Well Chritmas is over and we had a wonderful little family Christmas. Micki just loved all the paper she thought that was so fun!.
Of course she and her brother got so many nice things, but the best gift is that we have two very special children.
Reflecting back on the past year has been on our minds with all that poor little Micki has been through.It has been a long year and we hope the best is yet to come.
Micki is such a little miracle. I wish you all had the pleasure of seeing her progress.
Every day brings something new. She is a little monster she is so full of life, I have to say she is always happy and she is ALWAYS smiling. She loves to play with nannie cause nannie is such a nut case, any ways she loves to play peek a boo and pat a cake. I think I have told you before that she says na na when she wants me and i get calls during the day from her house and I can hear her saying it so off I go down to see the babies:)
Micki also loves to eat now, I think that before she was always having an infection and she wasnt feeling good, but now she will eat anything you give her and wants more.
She really is doing good and we are hoping things stay that way.
I added some new Pictures so go have a look. We are Praying for all our Krabbe friends as always and hope you all have a Happy New Year.
Julie

Tuesday, December 10, 2002 at 05:11 PM (CST)

Hi All,
Sorry it has been so long since I have updated the sites!
I have been with out a computer for over two weeks now, and I just got it all back.
Michaela and her mom arrived home last Thursday evening after being in the Hospitial for 3 long weeks.
Michaela...if I dare say this to loud is doing fantastic!
She now weighs a little over 15lbs and is eating every thing in site.
She grew more funny hair also while there and while we cant do any thing with it! it is cute.
Michaela turned One as many of you know the day after arriving home.
We had a nice family Birthday Party, she had a Minnie Mouse cake"she loves Minnie Mouse"
Her Grampa got her a big stuffed Minnie Mouse to match the small one she takes every where. And we also bought her a nice new High chair, and her very first Ring which is just a little too big yet.
Her mom and dad Got her a walker, a pair of pink sketchers and an outfit. A couple of the nurses alos bought Micki some lady bug slippers and outfits that was so nice of them.
Tiffany and Ron Angel Edens parents made Keelys stay there a bit easier they would come and get her and take her to their home to get out of the Hospitial and Keely said it was good to visit she enjoyed it.
Micki has gotten very vocal these days and she hollers at us and makes all kinds of new sounds she even sings la la la.
She loves it when we copy her she thinks it is so funny:)
It is amazing to see her do things and it takes our breath away. She doesnt miss one thing I will tell you she is on to you before you can blink.
Micki also has increased leg strength and will stand on her legs. Her head control is nearly perfect now and she continues to reach for things, she actually loves to hold things in her hands she breathes really fast like she is panting and tries to get things to her mouth.
She also has two teeth on the bottom that she loves to run her tounge over.
Its hard to believe that in another month she will be one year out of transplant. Now for the best news......
Micki no longer has a porta cath or central lines. they have taken her of her pantamidine and she will get a serum similar to that by mouth and they are decreasing her steriods. It shouldnt be but a month or so and she should be off those meds. She goes to Durham again in January for her One year tests. I guess that about sums up this update please check the new Pics out. Also Pies site will be updated he is so glad his mom and sissy are home!
Please keep them in your Prayers and God Bless you all.
Julie

Tuesday, November 19, 2002 at 01:28 PM (CST)

Hi All,
Thought I would update you on Micki's condition.
We finnaly heard word this morning on what is going on with our little princess,
She has Staph Aureus it is a blood infection due to her Portacath. The Dr told Keely this morning that is the diagnossis. She will need 14 days of strong antibitocs and the Port has to come out, he is waiting word from Dr Kurtzburg as far as what she would like done.
I know what Keely wants done and that is she wants the port out completley, however it is very unlikely that Dr K would allow that. Keely is very down as you can all imagine she is so lonesome and misses Pie terribly she is over 3 hours from home and it is very stressful worrying about Micki and a broad range of other things.
She said they would not be home for Thanksgiving and she doubted they would be home in time for Mickis first Birthday. I am so hoping she is home for that we have a big party planned for her. Michaela is eating good so that is a good thing and she is smiling and being very verbal.
She doesnt like Dr's and nurses one bit and the minuite they coem in the room she puckers and screems. Keely said some of the nurses are getting complexs.....
My heart breaks because I want to be there with my daughter and I havent been able to do that, Kris landed a good full time job so he cant be there and I need to be here taking care of Pie.
Tomorrow Pie and I plan to head down the long road and stay 2 days and then come back. Iam hoping this perks Keely up some? She also needs more clothes and personal things so she can stay down. Tiffany and Ron"Angel Eden's" parents have been so good they have been over to visit Keely and Tiff if you read this that meant so much to Keely. Thanks.
Iam going to leave you all her mailing address in case any one would like to send a card or note, I also have a toll free number to reach her if any one wants that e mail me and I shall send it too you. Please keep Micki in your prayers and Pray for Keely to have the strength to deal with all this. Thank you all and God Bless you.
Julie

Michaela Calaman room #639
Maine Medical center
Bramhall st
Portland, Me 04101

Friday, November 08, 2002 at 06:26 PM (CST)

Hi All,
Miss Michaela and her mom arrived back last Saturday,
from Durham.
The tests now are just starting to come in they are looking so good! Her enzyme level is normal and her FISH TEST, which tells how many donor cells she has is at 100% donor cells. Her nerve conduction study had improved from last time as has her MRI.
We couldnt be more happy this is just such a Miracle.
We sure did miss her while she was down there.
Michalea does so much now she is just so full of herself,
she is gaining super good head control and hardly ever relaxes it any more she acts like she is going to take right off some where.
We laugh because her hair is so funny all that she grew back just stands up all over the place it sorta looks like she stuck her finger in a socket.
She has a favorite toy and it is a stuffed Minnie Mouse with hot pink and purple clothes on and she loves it, she will laugh at it and talk to it.
She is very vocal now and if she hasnt got one of us in her face she lets us know it by hollering and sticking her toung out. She is cutting a tooth on the bottom and doesnt want you to look at it she will stick her tongue out and go la la la until you stop.
Michaela is just a little ball of fire and we are so glad she is so active. I will keep you all posted, check out the new Picutes.

Monday, October 21, 2002 at 08:30 PM (CDT)

Hi All,
Just wanted to update you all on Michaela, I had posted a message earlier on the Krabbe board and things have changed a little so thought I would do another update here.
Micheala recieved blood today something she hasnt had to have in several monthes.
It seems that she has a virus and Dr K asked them to d another test to see if some thing was eating her blood cells and I guess it came back positive. so she has some kind of virus and they arent too concerned with that at this time as all kids get virus's.
Dr K and Dr H agreed that it was viral and they increased her steriods alot to help her through this stress on her system. she is also on antibiotics.
The poor little thing has been so sick! she hasnt eaten and that is most upsetting because she cant afford to loose weight we have had to fight to get any weight on her at all. Keely is very down and Iam worried about her she has had so much stress and she is down there alone right now and she misses Pie terribly, she doesnt like to be away from him at all.
You all know how boring hospitals are and they dont have activites there or others to talk to so it makes for a long day. Michaela didnt sleep good last night at all so I guess it was a long night filled with worry.
I talked to Keely about an hour ago and she said Michaela had been sleeping alot and did eat 4 ounces earlier this eveing and she was going to try to get more in her. She said her color was finally looking alot better, and the Dr's felt she would start comming around by morning. We ar Praying for that and for her to start eating. Keely did get some smiles from her tonight and she was so happy to see her little girl smile.
Pie has an appointment down there on Wendsday so I will proabably pack him up and all the gear and head down tomorrow to spend some time with Keely and Michaela. She also needs to see Pie.
Iam getting ready to go to bed and say a long Prayer for my grandbabies and all the other little sweethearts that suffer from this horrible disease. I love them all and I think about them all throughout the days. Please keep them in your Prayers as well.
I Will update again as soon as I can and keep you all informed. Thanks for all your Prayers.
Julie

Friday, October 11, 2002 at 08:09 PM (CDT)

Hi All,
I have been going to update this for a week now!
Micki is off her antibiotic.
Time is drawing near for Micki's trip to Durham. I think they will be impressed with how she is doing. Micki is such a delightful little girl. I have been having a ball with her!
When her and her brother come to nannie and Grampa's they get all the attention and we do all kinds of things.
Micki got her first dose of doing Girl things with nannie.
Nannie painted her little nails and I have to tell you she didnt mind it at all... she laughed at me and watched me closely, her Grandfather and I laughed so hard at her expressions. and then because she is unable to have real earrings right now due to it being a source of infection,
Nannie bought her magnetic ones little picnk hearts.
It was priceless!!!! Keely said she cant wait to take her to clinic and tease Dr Hurwitz with the earings as they have discussed her having them as soon is she is far enough out of transplant for it not to be a problem. Good News they are taking Micki off Reglan and she only needs to get her Pantamdine once a month now and they are doing a test on Wendsday to see if they can get her off her steroid drug.
Believe it or not she is almost a year out not long now.
Micki continues to get good therapy 3 times a week and she no longer cries all the way through. She loves her Johnny jump up, but hates to get on her belly that is her worse thing she hates it. Tina thinks she has come a long way though. We just need to get her body to grow and that has been a tough one. Micki also enjoys eating real food she smacks and smacks. Her bath is her favorite thing it is magical honest if she gets fussy put her in the tub it is amazing she laughs and plays and tries to drink the water!
TOOO FUNNY!!!!!!! Well have rattled on long enough but what can I say? Thanks for stopping in and I will update soon.

Monday, September 30, 2002 at 06:15 AM (CDT)

Hi Everyone,
Just a update to let you all know that Micheala had to be hospitlized late Friday night.
Friday while acessing her port for a cyclosporin level they nocitced that it was a little bit red so Keely called the Dr In Portland. Micki didnt have a temp at that time so they sent her to have blood cultures done and she seen the Dr here and they called her Dr in Portland at that time to see what he wanted to do. He felt that it was probably just some cellulitis but to be safe they put her on a strong antibiotic and would wait for cultures to come back in 24 hours. He told Keely that if she spiked a temp in any way he wanted a call. Micki did well all day seemed happy and ate well and then at around 10 Friday night she became fussy and wouldnt sleep and her temp had gone up too 100.1.
So all the Dr's were called and it was decided that Micki needed to go to Portland. After arriving there her temp was down and she hasnt had any more fevers and they have continued the antibiotic. The pilimanary blood cultures showed that one grew and the other didnt, at this point she seems to proabably have a staph infection so they have added a yet stronger antibiotic. They just want to be safe and we are glad they are right on it. Keely says Micki has been fine and not sick during her stay there, no temps or any thing. You know how the weekends are at Hosptials!!! We really wont know much until some time this morning. Please say a Prayer For our sweet little Micki, she is a strong little girl who just is always so happy.
Thank you all.

Thursday, September 26, 2002 at 08:10 PM (CDT)

Hi Everyone,
Michaela is doing great!! so good in fact that her Dr has decided that she only needs to go to clinic every other week now.
She is now 13 lbs and she does so much!!! We are so pleased with how her therapy is going and she doesnt cry now during it so that is a good thing.
Michaela is so vocal and she is the happiest little girl I have ever seen she just smiles and coos all the time.
She absolutley loves her big brother, she coos at him and smiles and tries to get him, she just stares at him when ever she is in within his view.
In just a little over 3 monthes from now Micki will be 1 year out of transplant!!!!!!! Too hard to believe huh.
She is due to go back to Durham the end of October for her studies again. I think they will be very pleased with how she is progressing.
He therapist Tina whom we absolutley adore said to me today that she sees improvement every week.
Micki loves he Johnny jump up and laughs while in there every time it bounces she laughs.
Micki now eats foods she loves potatoes and squash.
I wish you could all see all the neet stuff she does and how happy she is it is such a miricle this transplant. I wont lie it hasnt been easy but ohhhhh so worth it all.
I guess I will close for now but before I go wanted to remind you to go read Pie's Page also.He has lots of news.
God Bless you all.
Julie

Monday, September 02, 2002 at 06:40 PM (CDT)

Hi All,
First off Michael and Michaela would like to announce the birth of thier new cousin Jacob Philip last Wendsday at 3 pm weighing 8lbs! He is the adopted son, of my son Josh and his wife Stacy. They are unable to have children. This was a special gift and we are all happy for them.
All is going well with the exception of Micheala going off
Methadone.
Last week her Dr decided to take her off it and he told us there would be some withdrawl symptoms and that it wouldnt be easy.... That it isnt, she has done pretty good.
She has been fussier than normal. We also feel she may be cutting some teeth?
She was getting such a small dose of the Methadone and she had about out grown it so she doesnt need it any longer.
Its hard to see her have to deal with all that she has too.
She is growing and we just want her body to get a little bigger now.
She is such a copy cat she tries to copy every thing even sounds and you know what?? I keep saying nana and she will make that sound.
She follows every one if she hears you and cant see you she coos and smiles.
She still hates taking her meds and trys her hardest to spit them out. No matter what Keely tries she knows all Keely's tricks and the minuite she sees her comming with the
syringes she has a fit.
We has a special moment the other morning Pie was sitting in his kid kart and we held Michaela down there to see him and she rached out and touched his face and smiled so big and then she cooed at him. He too was looking at her with huge brown eyes, it was awsome to see. She Loves her big brother.
She still hates therapy! she whines almost all the way throught it, Tina the therapist is going to have a complex soon. Tina feels she has come a long way in the past few weeks.
Michaela leaves tomorrow after therapy to go to Portland.
I sure do miss her when she goes. I proabably dont need to tell you these babies are my whole life. I love them dearly.
Please check out the new pictures in the album.
God Bless you all.
Julie

Sunday, August 25, 2002 at 10:05 PM (CDT)

Hi All,
Micki is doing great, I look at her and its hard to believe that she has been through all she has.
She is a happy little one and she Loves everyone.
Her Dr says she is doing very good and she continues to go
to clinic every Wendsday some 250 miles from home.
Some times they go down the night before and spend the night at my moms and some times they go down and back in one day. There is 2 weeks out of the month that she doesnt get any meds, so they asked the Dr if they could just have Visiting nurses come here and check and weigh her and he said no not right now he doesnt want too until she is off her Cyclosporin.
Micheala also got her special wish delivered, She got all new nursery things she got a beautiful new crib, new stroller and her nursery is all done in the John Lennon theme complete with valances border quilts and rugs and even a mobile and lamp it is so nice. She also has a rocker so her mom can rock her.
You know Anne Rugare told me things would get better and I almost didnt believe her but she is right we are almost wondering what color ribbons to put in her hair.lol...as soon as she gets enough. I know we arent ok yet but you know every day gets easier.
We are excited that they are going to have her in the new Hunters Hope News. We are getting her Picture ready and her little bit of history so we can mail it to Micki and Kim at Hunters Hope. Well Its getting late so I guess I better go to bed as I have to work in the morning. Please keep Micki and Pie in your Prayers as we all take one day at a time.

Monday, August 19, 2002 at 11:10 AM (CDT)

Hi Everyone,
Micki is doing so good she is learning more daily.
She has been having therapy 3 times a week. which by the way she hates!!! yep she is fussy through out most of her
therapy time.
Tina the therapist is so good and she takes her time and gets through it. She said today that she sees alot of improvement in Micki, and we were so happy to hear that. Micki is trying to roll over now and she is doing so much better with the head control. Tina said she will catch up quickly. We are just to pleased with Micki's whole process of post transplant life.
You know the whole transplant journey is so very hard but when you get to see these things happening in front of you, things that other people with healthy children take for granted. We just want to shout hey.. Micki can roll over hey... Micki can move!!!!!!!! well you are all going to think Iam a fruit cake and I suppose I am. I do love these granbabies, with all my being and I will keep things moving as long as Iam alive.
Michaela is a pure delight and she so loves her brother she lites right up when she sees Pie and they are definatly connected in ways we will proabably never understand.
Micki's labs have all been good and she continues to go to clinic every wendsday and her Dr just loves her.
Sadly the kids wont be attending Liam Hammonds fund rasier and they had wanted to go. They spoke with the Dr and he doesnt feel comfortable with it at all. Keely said they will wait and go the next time as soon is Micki is over a year out of transplant.
we are getting closer Micki is 7 monthes out already.. and 8 monthes old!!!!!!!!.
Please keep our babies in your prayers and God Bless you all.

Sunday, August 11, 2002 at 11:02 PM (CDT)

Hi All,
Every thing is going great....shhhh I hate tosay that too loud. Micki is gaining all the time and she does more everyday. She is such a happy little girl!
This little one is eating more and more and she is just filled with energy it is so awsome to see.
Now that she is home here she has a wonderful therapist comming her name is Tina and she has 3 children her self and her youngest a girl is 10 monthes old.

I could tell the minuite that she came through the door she was right for Micki. We loaded her all up on Krabbe info, giving her the Hunters Hope news letter and a pin and a candle and she was so happy to get it. She said she had been on the internet the night before reding what she could on it. She said the first thing they had to work on was Michaela's head control. With out that she cant do things she should be doing so they are starting with that.
she does ok but needs to be able to hold it up longer. We have been working with her too as it cant all be left to Tina. Michaela will be getting therapy 3 days a week. Oh you will love this one she fell asleep on Tina the other day!! yup she worked her too hard i guess and they had her in the excesaucer and she fell sound asleep I have added the picture so you all could see. We are so excited as both children are getting their much needed therapy.
Micki's labs have all been so good and she goes to clinic once a week and is home the same day.
I will try to update again soon, seems as though work thinks I should live there latley... Please continue to Pray for our babies and we thank you all for comming here and sharing our journey. We Love you all.
Julie

Friday, August 02, 2002 at 08:33 PM (CDT)

Hi Everyone,
Iam finally getting a minuite to update the childrens's pages. I have been working more hours latley.
Michaela is home, we still have to take her to clinic on Wendsday but we knew that and that is fine, it is a long drive but we are gettinguse to it now.
Micheala did awsome as far as her tests go.
They had a wonderful visit with Dr Kurtzburg and Sue as well.
Keely said Dr K was so diffrent this time? She even tried to hold Micheala but...... Michaela is such a mommys girl and she really doesnt let any one but Keely hold her. She lets us all play with her but she doesnt want us holding her long....
Michaela is growing now she has finally decided to eat and she does so much better keeping it all down. We do however need her body to grow her head circumfrence is good but her body needs to catch up that is what Dr Kurtzburg said.
She as you know released them to come home and just go to clinics once a week now. They have already set up therepy here for 3 times a week in her home so that is great.
It is just such a blessing to see this baby progressing and she coos loudly and hollers to get attention.
She has a schedule and she just amazes us all. We have so many to thank, God for a miracle and Dr. K and all the people who gave this child a chance at life. All of you who have supported all of us and listened and understood and well.... just been there we Love you all.
Please keep Micki in your Prayers we arent out of the woods but with each passing day we feel a little more at ease. In a few days Micki will be 8 monthes old and 7 monthes out of transplant.Oh and just so you know she is sitting here i just took her out of bed:) she loves me for that and her mother hates it but she is down the drive way so we dont care. Micki wants to visit and nanny says she can.

Tuesday, July 23, 2002 at 06:41 PM (CDT)

Hi Everyone,
I just talked to the kids and all is going well thus far.
Yesterday Michaela had her nerve conduction test and Keely was worried about that because they said there had been some woresening, but not that much? So today when they met with Dr Kurtzburg Keely asked her about it and she said it was nothig to worry about it was just a small amount.
Today they also went to Dr Escolar and that went very well.

And the MRI was also good no progression from the last one.
And another thing I must share Michaelas first visit with Dr Kurtzburg went very good today she showed off for Dr K. Keely said she was smiling and cooing at her.
Dr Kurtzburg said they could come home for good and just go to clincs once a week so we are all delighted to hear that.
Keely said they always take pictures of the transplant kids for the record and Micheal smiled:)
They will have another meeting with Dr Kurtzburg on Friday to dicuss all the tests and she will make recomendations for Michaela's care.
Iam so glad all is going well at this point and I knew they would be impressed she has grown and developed and of course she is sweet....
I just cant wait until they are all back home this week is going slow. Please keep them al in your prayers and I will keep updating this for all of you.

Sunday, July 21, 2002 at 09:12 PM (CDT)

Hi Everyone,
As you probably all know our little family is once again in Durham. They boarded a small plane this morning that took them to Long Island where another pilot took them from there to Durham. And Kelly picked them up at the airport" thank you Kelly" it was a long day and they are all tired. But the babies did great and that is the main thing.
It is time for Micheals testing and they will have a very busy week. We here at home will miss them all.
Even though they have never made it home yet really. They have come for visits and stayed a couple of days. We are hoping they will be able to get home for good after this visit with Doctor Kurtzburg???
It has been a long haul and Iam sure will continue to be. But we are ever so pleased with the results we are seeing.
Micheala is so beautiful and every day is a joy for we get to see her doing wonderful things that we may have never been able to witness had she not had the transplant. The kids are looking forward to seeing thier friends there in Durham and have already met a new family this afternoon.
We also know that Ryan Kristoff is going through his testing this week also. Ryan is doing so good:) and may be able to go home soon they have also had a long haul. Please keep Ryan and Micheala in your Prayers for good test results. I will be updating alot this week to keep you all informed. God Bless you All

Saturday, July 06, 2002 at 07:05 PM (CDT)

Hi Everyone,
Thought I would come here and update for those of you who do take time out of your busy day and check Micki's site out.
Michaela just turned 7 monthes old and she is 6 monthes out of Transplant and she is doing wonderful. AWSOME. We are so grateful and so blessed.
At this time Michaela can coo and she smiles everytime you look at her and she just continues to amaze us all every day!
She is eating so much better and has no reflux now since being on the reglan and pepcid both. she is gaining and filling out and growing hair.
She looks like the picture of health and belive me if you seen her you would never guess what all she has been trough.
At this time she has learned to copy what we do if we smack our lips she does too and its a riot to see she sucks her whole lip right in, It is something to see her developing and she reaches and grabs for things and gets them too. Every day she does something new.
The 20th as far as we know the kids have to leave for North Carolina for her studies.
That is going ot be hard for them but they are going.
Please keep them all in your Prayers.
Julie

Tuesday, June 18, 2002 at 03:16 PM (CDT)

Hi Everyone,
It has been yet another busy week here.
Keely, Kris and the babies are all down to my moms. Yesterday the visiting nurse came and weighed Michaela and she is gaining still. she is almost 11 pounds now just a couple more oounces. The folks at the Portland hosptial are so great they worked so hard to find the right thing to help Micki gain weight, if only this had been done monthes ago? Oh well at least she is on an up hill climb now thank God for that.
Micki is doing so wonderful I just wish you could all see her every thing about her seems so perfect, her coloring her development, her hair, and those cute little dimples.
It wont be long now and it will be time to go back to Durham, we arent in love with that idea as they havent even been able to come home yet. Speaking of that tomorrow I think that all may change? we are Praying for it too. There isnt any reason and hasnt been that Micki shouldnt be home. I think her Dr here should have the say he should be her primary Dr now. We have met the criteria that Dr Kurtzburg wanted before she would want Micki up here and that was that her central lines be out a porta cath in and that she would be off TPN and gaining weight and all this has been happining for a while now.I agreed with Dr, K then as far as they werent set to handle those things here but now that those things are done she needs to ok them comming home. That will still require us to take Micki down to Portland onc a week to clinics and then Physical therapy and the visiting nurses could come here to see her.
These kids deserve to have a family life and Micki is doing so good. Things havent been easy for them with this transition and I think we are the only ones that had this type of treatment. I hope no one else has to go through what we have had to go through EVER!!!!We are, though ever so blessed to have a little girl doing so well and I thank God for that every day! Please keep them in your prayers. I will keep you updated as to when they will be able to get home. God Bless you all.

Wednesday, June 12, 2002 at 04:58 PM (CDT)

Hi Everyone,
Today is day 152. we had a wonderful visit with Keely and Michaela. I cant tell you all enough how wonderful she is doing and she looks fantastic. I have never seen her look this good her coloring is great she is gaining weight and she is the happiest little lady you have ever seen! She smiles all the time. She grows more hair every night in her sleep "Iam not kidding" She had her clinic visit today and her Dr here in Maine is very nice and he is so pleased with how she is doing. I just love the Dr they have, he is so friendly and caring.They are trying to get things arranged so she can get home. I could go on for hours on that one! but I promised I wouldnt use this to vent on and at this point today I want to give a certain person a peice of my mind but I will try to be good and let God handle this because I know something has to happen soon to get our family back. I have added some new pictures for you all to see hope you enjoy.
and I will update again soon as I know when they will be comming home again.
Please keep this little family in your Prayers. God Bless you all.
Julie

Wednesday, June 05, 2002 at 04:59 PM (CDT)

Hi All
Tomorrow will be Michaela's 6 month Birthday.
She is 145 days post transplant and guess what????? She is finally comming to her home. She isnt able to stay for good just yet, they want just a couple of more weeks to make sure all is going to stay as well as it is now. However they have a go ahead on comming home for the next 5 days. Her appointment with her Dr today went very well and they are pleased with her. she has gained a little "still has a ways to go" but we are estatic.
Grampa and I are happily waiting their arrival tonight. I havent seen her in two weeks and I guess she is doing alot more and growing lots of hair.Grampa hasnt seen them in a month so he is anxious to see her.
As far as everything goes she has done well she has no central lines and no TPN. she has a portacath and is eating like a little piglet her mom says. I guess that is all she wants to do is eat :)
Well folks Iam looking forward to this visit and it has been almost 7 monthes now since Keely has been on home turf. I will up date again soon to keep you all informed on the days ahead. Please say a Prayer for my babies.
Watch for new Pictures in the next day or two. Love to All.
Julie

Saturday, June 01, 2002 at 09:03 PM (CDT)

Hi All,
Michaela was released from the Hospitial yesterday. She is eating more now and we hope to see a good weight gain now she has already begun, so we must keep Praying that she will come along good in that department.
So far she is doing well with the portacath I havent seen it yet but cant imagine some one that little having one. Keely said it is in the center if her chest,at first Keely was scared of it but now she isnt.
I guess in just the week since I saw her she has alot more hair,her dad says we willbe combing it soon. She is having O. T. now an will be getting physical therapy. Iam glad to hear that. Kris said she is moving all around know when she gets excited.
Wendsday is her clinic day and she gets to see her primary Dr Keely is anxious for that so they can talk about how much longer Michaela is needing to be down there.
To be honest Keely says she doesnt want to rush things she feels safe there and she loves the Dr's there. I found them very easy to talk too and they just seemed to want to include you and that is what I missed so much about Maine.Keely said she will come when they tell her she can but she wants to feel comfortable about it also.
My mom likes having them any ways so that helps. Kris and Pie are going down on Tuesday so he can take them to clinic on Wendsday. Oh and one last thing they are weaning her off some more of the meds and that is going good she is adjusting ok with that. well I will close for now and update again in few days as I find out more.

Wednesday, May 29, 2002 at 12:26 PM (CDT)

Hi Everyone,
Michaela was suppose to be discharged today but her Dr is out of town and the attending didnt want to send her home on that Antibiotic so it looks like Friday now.
As you can imagine Keely is very home sick and wants so badly to be home home....
But she said she wants all to be ok and Micheala to be off the Antibiotics.
She is anxious to be home as she has been away from Pie and she doesnt like that one bit and she had her home set in last week and wants to be here to move in. Who can blame her she hasnt been on home soil in 6 monthes. That is a very long time. We miss them all being here together. and want to be able to fully enjoy Michaela. well I will close for now and update as I find more out. Love to all.
Julie

Monday, May 27, 2002 at 09:18 PM (CDT)

Hello Everyone,
Tomorow Micki will be getting a portacath put in at 9 in the morning. Keely is there alone and I feel bad. We all went down for the weekend. We had a nice time and we let Keely Kris and Pie spend some quality time together. Micki is so cute she smiles nice and big and has two cute dimples. she is even trying to roll over and she will reach for your face all the time. And we arent sure why but she is totally facinated with her tounge.
You know it is actually something to see but she knows when she sees nurses comming they are going to so something to her and beleive me she will protest.
Well we are hoping we are getting some feeding issues straightned around she hasnt done well with gaining weight. They placed a neonate nasel tube and are giving her 15 cc's per hour plus what she is eating by mouth. They are try to keep her off TPN. we just have to have a serious weight gain here.
When we left Durham Dr K told me it could take her 2 monthes to start gaining, we know we havent got this kind of time so they are working hard to get weight on her. We are confident that they have got the right thing happening now, she hasnt even vomited they have alos increased her calories so please say lots of Prayers.
She looks really good though, even the Dr said that to me the other night while we were there. she isnt thin and she is growing she has gotten longer. And she also has hair it is comming in good now. If all goes well she may be released on Wendsday but we will wait and see we arent rushing we just want things to be ok when we do get her out. Please keep her in your prayers.
I want to ask every one of you all to please Remember Little Ryan Kristoff in you Prayers he is going through a bad time. His family has been through so much and have been so strong. We need to ask God to uplift them and give them strength, also to help the Dr's help Ryan who has fought so very hard through out his transplant. Thanks everyone. will update soon.
Julie

Wednesday, May 22, 2002 at 06:27 PM (CDT)

Hi Everyone,
Michaela had a big day today. The Dr's decided it best to remove her central lines they have been discussing this for a couple of days at first they were thinking that they would remove these and put another back in. It seems they have taken care fof the bacteria in her blood and say the lines needed to come out. It was decided that they would put in a peripheal IV which they did today and removed the central lines she will no longer be on TPN. They have increased her calories in her formula and she is handeling it well and starting to gain. The plan is to place a portacath on Tuesday. We hope this wil all go smoothly.
Michaela seems to eb doing so good she laughs and smiles and plays and reaches she is really quite amazing. Keely has been right with her and Pie has been here with us and going down on the weekends. We are leaving Friday afternoon to go down and Iam going to be staying with Michaela for a night so Keely Kris and Pie can have some time together. Keely has been visiting with Edens parents Tiffany and Ron so that has been good for all of them.I just wish poor little Eden wasnt having all this done to her.She is so sweet. Well just thought I would update you all and will continue to do so as we go through the next few days.
Please keep the babies in your prayers.
Love Julie

Sunday, May 19, 2002 at 07:30 PM (CDT)

Hi All,
Thought it may be time to update you all. I just felt it better not to update for a while as we made the transition home and since being home we have all been very busy.
Micheala and Keely are staying at my moms to be close to a hospitial that is able to treat any complicated issues that may happen. So they are twao and a half hours from us but that is ok we are doing ok with that and will do any thing we must do for our sweet little girl. The Dr she has here is awsome I havent had the pleasure of meeting him yet but my mom did and Keely and Kris talk very highly of him. Som of you know that Michaela had to be hospitialized last week. It took a while to get to the bottom of things and when they admitted her they did full workups and kept in contact with Dr K. Michaela is doing good it seems she had a bacteria in her blood that they are clearing up with 2 very strong antibiotics, from what we are told it is very commom in transplant children due to being immunodeficient. she is doing great with no fevers or other complications at this time. So please keep praying. Keely said she may be able to get out of the hospitial on Friday this week? That will depend on if the bacteria is all gone of course. Michaela has started growing new hair and her mom says it looks like these little sprigs all over..."black hair"??? We are so glad to be back in Maine and Thank God every day that things are going ok. I will tell you that we are enjoying having Pie home with us he just got back from visiting with his mom all weekend so go check his page out too. I will keep you all informed. God Bless

Friday, May 10, 2002 at 10:41 PM (CDT)

Hi All,
I posted a few Pictures for you all.
Thank you all and God Bless you. I will update again soon.
Julie

Saturday, May 04, 2002 at 07:34 PM (CDT)

Hi All,
We have decided not to update Michaela's page for right now. Thank you for visiting here and signing the guest book. We are going through a very difficult time right now and feel it is best not to write for now.
We havent meant to say any thing to offend any one and hope that we havent.
May God Bless you all.
Julie

Friday, May 03, 2002 at 06:08 PM (CDT)

Hi All,
Another day another update, As far as we know now we are leaving Durham on Wendsday!
And boy are we ever ready, as you know we cannot return to our home town. Keely and the baby have to live at my moms in Augusta which is 2 and a half hours from our house, and 40 minuits from Maine Medical Center.
Micheala is still getting tpn because she is unable to absorb her food and Dr Kurtzburg says that is normal after transplant and she isnt sure how much longer she will need to be on it? could be another 2 monthes. They do not feel she is safe to go to our home town right now so we will do what is best for Michaela. There is a whole lot that doesnt make sense and some that does so that is where we are at for now.
Keely is so home sick as you can imagine and it really doesnt seem fair that we couldnt at least have gone there for one night before heading to Portland but that is the way it must be.
We are all mentally exausted and just ready for a change. We are so thankful that the babies are doing good and Micki is doing good in every other way if we could just get her of the tpn we would be in great shape. Everyone at home is pretty down that we cant go home and have our family home as we had thought but at least they wont be down here and it will be alot easier to see them and be with them. And as far as Pie goes he will have good care also. I guess I will go for now and update as things unfold it seems to change daily here.

Thursday, May 02, 2002 at 06:03 PM (CDT)

Hi All,
Thank you all for all the wonderful things you write in the guest book.
Today is day 110 and I have some un happy news. we had been told that if all went well we would be leaving any time after this Monday. Well we booked angel flight and told you all we were comming home because that is what we were told.
But today the funniest thing happened and it really isnt funny but any ways it seems that they chose to wait until today just 6 days until we were due to fly out to call the Dr's back home and make arrangements for Michael's home comming. Iam upset because they should have had this all done a long time ago not on the spur of the moment. Keely is heart broken and so are the rest of us but Wait......... there is hope. Dr Kurtzburg is working as we speak to get the Dr in Portland Maine and if it all works out Keely has agreed to live in Portland where Micheala can get the care she needs as well as the products she needs. We know that it will work we must have faith. So if that works out we will still go home wendsday?? That is all we know at this point we are waiting on a phone call from Dr k. I cant help but feel that they should have made arangements along time ago. We live in a very rural area and they arent able to care for Michaela and her special needs there so they were much happier to hear that we would go to Portland Me. which is 3 and a half hours from our front door. I just dont know what to say We truley want what is best for Michaela and Michael we have two children involved here and I keep hearing from the Dr's here "well we wants what is best for Micheala....Yeah Hello... SO DO WE it infuriates me to hear them say that we have been to hell and back, they havent a clue we have a grandson who is terminal and whom we love so very much whom we are missing valuable time with and then we have a beautiful little girl who has had a very tramatic 5 monthes and they dont think we have her best intrest well I tell you we do we dont want to jeporadize her in any way. these Dr's have no clue what we live with every day. We work very hard to take care of these babies and provide for their every need Micheal is 18 monthes and I feel he has gotten the very best of care and all you have to do is look at him to tell that. He however hasnt received the PT and OT and all the services he should be getting we want him home getting what he needs too.
Iam mentally exausted. But iam not giving up. Micheala has done excellent she will however have to go home on TPN and that really is the only issue with her. she eats but they feel she isnt absorbing it very good her weight goes up a few ounces and down a few or stays the same. She is developing very well she reaches for toys and follows things with here eyes and smiles and trys to coo. We are so Please and grateful for what they have done for Michaela dont get me wrong.
OHHHHHH KEELY JUST CAME IN Dr Kurtzburg just called we are infact going home wendsday as long as Michaela doesnt spike any fevers of any thing like that.. sorry folks iam not erasing what I wrote i worked toE hard to say what I felt. so now you have the REST OF THE STORY....

Tuesday, April 30, 2002 at 07:05 PM (CDT)

Hi All,
Today has been a good day. Michaela went to clinic as it was Dr K day and all went well actually Monday will be Micki's last day here at Duke she is being released to go home..... So we are all so excited about that we had thought that it would be wendsday but Dr K said she wont be here that day so we are free to leave after she is seen in the clinic on Monday and they have made preperations with the Dr's back home in Maine. Now we have Angel flight booked for Wendsday and we are going to call them first thing in the Morning and see if there is any way to change the day to Tuesday we are hoping they can but if not then we will still leave Wendsday. Oh you all have no idea how glad we will all be to be home again and especially keely.
They Guys are home waiting patiently or trying too. Tonight Tiffany Ron and adn that sweetie Eden are here visiting before they return to Maine tomorrow. I have to cut this short as we do have company but wanted to share this all with you. Love to all.

Saturday, April 27, 2002 at 02:51 PM (CDT)

Hello All,
It is a quiet day here at the Ronald Mcdonald house and we are tired.It seems as though the little ones like to keep us up at various times in the night the past few nights and it is catchig up with us.
Michaela is doing very well and the new medicine for her stomach is helping alot and we also only let her eat a couple of ounces to a time and wait a half hour and give her more so that was she seems to be tolarating her feeds and keeping it all down. She weighed 10 lbs 6oz at clinic today and her labs have all been good for a long time so we are pleased and Home is definatly in sight. Every day Michaela is doing something new she smiles so much and is cooing and so alert now she doesnt sleep as much and seems to want to play more. I have spoken to the peditrician at home and she is looking forward to seeing both babies when we get there and we asked her all about things and all the what ifs and she had an answer for all our questions, she is a sweet heart and it will be wonderful to get back with the Dr's that know us and care about how we feel about things. The Dr's here are very good just not personable. and I miss that.Keely is getting more anxious for the 9th to be here than you can imagine! We have booked a flight with Angel flight and I have to tell you Iam nervous I have only flown in the big planes. They are going to fly us right in to Houlton so we will be just a few miles from our front door, so that will be good for the little ones. We had Kelly, Zig,Pam and Katie over for supper the other night and it was nice. Pam said that Ryan is doing good he still has the fluid issue and the Dr's are baffled but are going to try some thing new again so we need prayers that they get him straightened around soon. I was glad to hear he is a little more alert now and I thin its all that good care and being home with his family. Please keep him in your Prayers also. Well guess I will close for now and update on Monday we should start hearing from the Dr's here about a schedule for home????????? Love you all take care.

Tuesday, April 23, 2002 at 07:37 PM (CDT)

Hi All
Today is Day + 103 And we have some impressive news.......... May 8th will be Micheala's last day in Durham if all goes as it is right now and nothing goes wrong.
Keely went armed with all her thoughts and was quite prepared and she had her talk with Dr. Kurtzburg, she was at clinic until 7 tonight. Micheala has her last study done today and that was at Dr Escolar's office and it was over 2 hours long and I was very impressed. I like Dr Escolar and it was an enjoyable experience. Our little beauty is right where she should be for 4 monthes old she really impressed the whole team over there. So we were so happy about that and then to get the news that in two weeks from today we should be able to head home to Maine. Now all the plans will be started towards getting there. We need to call Angel Flight and line every thing up. OHHHHH I cant wait. I feel like jumping up and down and jumping off this page and just Hugging you all, for all the Prayers and support well for just everything... Life is good today. Micheala is cooing and smiling and this morning she woke up at 5:30 when I was giving Pie his meds and she just wanted to visit and play so we did just that and when she was done she went back to bed, it was so much fun. We called Grampa and dadda back home and they too are excited to get us all home and enjoy the upcomming wedding of my Brother. Well folks I have babbled on too long again. I must relax tonight as we have alot to do here in the next week. God bless you all and keep the Prayers comming.
Love Too All.... Julie

Sunday, April 21, 2002 at 03:51 PM (CDT)

Hello Everone,
TODAY IS DAY + 100 AND NO HOME DATE YET?
Iam now here in Durham with Keely and the two babies, Kris and Phil left for home hauling a u haul trailor on Thursday and arrived in Maine safe and sound on Friday.
We miss them already. Our family has been seperated for 5 monthes now and we all just want Micheala to be ok and we want to go home. Iam not one bit impressed with the way the Dr's are here as far as they arent willing to talk to you and they tend to make me feel like a complete fool if I must say so. back where we are from I have a wonderful relationship with all the Dr's for Michael and can call them any time and ask any thing, they take the time too explain and I feel so at ease with them. It is not like that here and I dont like it one bit so tomorrow Iam calling the Dr's back home and I want answers we arent getting here and I will get them! Iam going to have them call here and get them for me. The day I got here I tried to ask some questions and about got my head bit off and left feeling like the size of an ANT.. Iam not medically dumb by any means and have done my home work and I dont like not being listened too and involved in my grandchildrens care. All I want is to have my questioned answered in a nice timely fashion not rudley and bluntly! I have questions and very valid ones. I want to know where they want Micheala to be before they discharge her home??? Oh Iam sorry I wasnt going to say any thing.. but here Iam venting again. Micheal is doing great today she weighed in at 10.4 finally and we are pleased. She has been doing all her 100 day testing and so far they are all comming back good. Im very nervous about the Dr Escolar visit on Tuesday. She is a devolopmental Dr. we will let you know how all that goes. Iam sorry folks for venting, I do want to say Iam ever so thankful to Dr Kurtzburg for what she has done for our beautiful grandaughter truley Iam. I just think they lack in effort to inform parents and family members of what is to be expected that is all on that... I will try to update again soon and hopefull on the lighter side with better news maybe even some idea when we could think of going home?????????? Please keep the babies in your Prayes we do need the power of Prayer to get us through this. Love to all Julie

Tuesday, April 16, 2002 at 07:22 PM (CDT)

Hi All,
today is plus 95 for Michaela.....
We go the best news today. Micheala has been going through her 100 day tests and she has been doing so good they are all great she has already started remylination and all her liver and kidney tests are great well just every thing is super......
Also the MRI was very good. Praise God.
Now if we can just get them to commit to comming home day?? She is stillon TPN and gaining slowly but she has gained some.
Grampa and I are flying out early in the am so we are geetting ready to see our babies and we just want to get our little family home. Iam going to be staying with Keely and the babies and helping all I can. We will update again soon. Love to all and keep those prayers comming.

Saturday, April 13, 2002 at 10:04 PM (CDT)

Hello Everyone,
Thought I would update this is I have a little news. Micheala gained a bit so we are so happy for that. She is sensitive to the TPN so that causes her to vomit some which isnt helping either. We are now at day + 91 with 9 days left till that 100th day post transplant.... GO MICKI GO.....
For those of you that dont know she came down with GVH rash and has been on cream and they have increased her steriods. I am very upset about it but I guess from what I hear it is a thing that they all seen to get around this time, so we do need extra prayers that she will get through all these little bumps in the road.Micki has done well though she is a little trooper. We are hoping to get them home soon. They are very home sick. Phil and I head out there on Wendsday and will get there early so that will be good.
She had her eye test and that went well and starting Monday they are doing all her 100th day testing, On Monday she has an EEG and a nerve conduction study and every day she has some kind of test so I will be updating alot as I find out the results.
Micheala has started to smile better now and they feel it is because she is getting all the nutrition she needs. I cant wait to see her smiling. We Love those babies and it is hard to see them endure all they have to. Keep checking for new pics Iam suppose to be getting some soon. I think the Dr's are really trying to help little Ryan and I know they will Lets pray that they will get him well so the Kristoffs can all get home soon, they have been there a very long time now but it does seem that they are going in the right direction now.I cant wait to see our friends in Durham.I will close for now and update real soon. We love you all and thank you for all the support and Prayers.

Saturday, April 13, 2002 at 10:04 PM (CDT)

Tuesday, April 09, 2002 at 09:04 PM (CDT)

Hello All,
Today was Dr Kurtzburgs day at the clinic and as I had suspected they are putting Micki back on TPN for a bit to get her nutrition back up there. We didnt want this to happen but its for the best. Dr K also said she may be there another 4 weeks but I kinda think she is giving them the worse case scenerio Iam confident that she will make it before then. I wont Lie I was down hearted to hear that as we want them all home and are worried about Pie not getting his care out there also. We are however heading back to Durham next Thursday so Phil can travel back with Kris and I will be staying with Keely the remainder of the time. I am anxious to go out there and be with the babies we miss them so bad and are missing being grandparents. We are going to be doing a news story on Krabbe with a local news channel but haave decided to wait until the kids get home to help and also so people can see the kids, I think it will hit home better that way also.
Well folks on the up side Micki is doing very well other wise and we are so thankful for that this is just another bump in the road. A very depressing thought that we will be delayed but we can Pray that it will move along smoothly and wont be that long. Keely did say tonight that she doesnt want to bring Micki home until all is well and they are sure she is ok to come home as she doesnt want to run into any problems after they get her home. Please keep Praying and Please keep little Ryan in your Prayers as he struggles to get better, he is a little fighter.

Wednesday, April 03, 2002 at 07:24 AM (CST)

Hello All,
We are at day +82 with 18 days left until day 100.
I thought I would get these pages done this morning as I have a busy day ahead. Micheal is doing good considering all she is going through. We do however have some feeding issues that need to resolved. The feeding tube hasnt done Micki much good and we felt it was even making her vomit more? The feeding tube cam out yesterday for a trial period od three days, as of last night when I talked to Keely she told me that Micki had been eating alot better and keeping it down so we are hoping that she can do better with out it but if not she will have to have it back in. Currently this is the only issue with Micki all else is going very well. If we can get these feeding issues resloved it may be possible that they can come home when the hundred days are up? Keely did say that she didnt want to rush Micki and that when she felt it was safe to come home they would come. So we will just keep Praying about things and see her through this time. I talked with Anne Rugare yesterday and she is so encouraging about every thing and some times I just need that. As she said these little ones have so much repair going on in their little bodies and it takes time to resolve some of these issues. However the out come is worth every minuite. I look at Gina and all the others and say wow we will get to see her play and laugh and do silly things and i just cant imagine the happiness we will all feel. Micki loves her brother and Keely says they are so connected, yesterday she was grabbing his clothes and holding his hand I would love to have seen that, Michael doesnt know what to think of all that. As Anne also said ONE DAY AT A TIME!!
Thanks Anne for your inspiration. I will update this soon as I hear more Please say Prayers that Micki will continue to improve and gain weight. Love to all, Julie

Friday, March 29, 2002 at 01:10 PM (CST)

Hello Everyone,
We made it back from our trip to Durham.
It was so nice to see the babies. And I must tell you all that Micki's pictures lie... She is just so tiny. They have had to put a feeding tube in her nose to give her added nutrients, she has been eating but just not enough, also she has a hard time at times to keep it down. But on the good side she is now at day PLUS 77...... with just 23 days left until her 100th day! We are so hopeful about that time that she may be released to come home. She is doing well and is on all oral meds now and her labs are really good. She needed blood just once while we were there and she hasnt had to have platlets in a long time. Please keep those Prayers comming. The Dr's are saying at this point that we just need to get the nutrition up and they have scheduled all her 100 day tests so we are atleast hopeful at this point. She is a sweet little girl with big blue eyes and she has discovered her tounge. And let me tell you she is a momma's girl she doesnt want Keely out of her sight for a minuite and she says maaaaaa. She also loves to sit near her big brother and watch him. We did have a good time and Kelly and Pam Kristoff came over along with Katie, we had a nice visit. Ryan was to be going home yeterday so Im Praying he did get home and get his new kid kart. well I cant thank you enough for all the prayers and the thoughts that you send our way. God Bless and we will keep you all informed.

Monday, March 18, 2002 at 08:54 PM (CST)

Hello Everyone,
Today is + 68 in just another 32 days Micki will be at 100 days post transplant!!!!!
GO MICKI GO... We hope they will consider letting her come home to Maine then.That would be around April 21st? Of course in the transplant life we must take one day at a time. She is eating good and doing all the normal baby things, she likes to play with her tounge alot now and she does smile some and make some cooing noises. She continues to go to the clincs every day and some days are longer than others but Keely says it is better than it was. From what I hear she is a mommas girl. She is going through this thing where she only wants her mama and thats ok too. Grampa and I and Me me "my mother" will be going out there this week for one week and we are counting down to Thursday until we get there! Those babies are in for lots of hugs and kisses. I plan to add some pictures so check it out.
Please keep those prayers comming and once again thank you all for all you do. we couldnt do this with out your support. I would like to ask you to also keep the Kristoffs in your prayers Ryan is so precious and he is such a little fighter we Love him and hope the Dr's can get him straightened around soon. We will try to update this from out there so stay tuned.

Sunday, March 10, 2002 at 07:03 PM (CST)

Hello All,
Today is + 57 so we have 43 days until they should think about comming home! we are so hoping that all continues to go well so our little family can come home to Maine. Keely tells us Micki is smiling and cooing now and we just cant wait to see her doing that.
The kids are getting homesick and just want to be able to come home as soon as Micki is able. The clincs are going well and they have taken Micki off a few of the meds and lowered the rest, so I would think that is a good sign. She is eating very well now.
As you can see from her new pictures she looks really good! another week and ahalf and Grampa, Me me, and I will be there to give those sweet babies some Love. Please keep them in your prayers and alos little Ryan Kristoff and his family.

Tuesday, March 05, 2002 at 09:36 PM (CST)

Hello Everyone,
Today is day plus 52 so we are half way to day 100. The day they should be able to return home to Maine. Micheala has done well since the episode last Thursday. Thank you all for your prayers and Thank God that every thing turned out all right. Michaela is eating very good now and from what I hear that is all she wants to do.
Keely told me that she has been smiling alot and that pleases me so and I cant wait to see those smiles. Grampa and I and Me Me are going out soon and We will be able to love those sweet babies. The kids are enjoying having a vehicle to get here and there and that is such a blessing.Kelly is so good and checks in on every one there and offers support. Please say some Prayers for little Ryan Kristoff as he is still in the Hospitial with some problems. Also say a prayer for his family as they are dealing with alot of stress. I have to give them alot of credit, they are very strong.
Transplant life isnt easy and it comes with alot of stressors as we are finding out.
Leandra Fry is back at Duke clinics haveing her check ups and Keely told em she looks fantastic, and of course she was glad to get to see them.We are planning a benefit supper for the Kids trip home which should be around April 21st if all goes well. Please keep my babies in your Prayers and all the other little ones with this terrible disease called Krabbes. Together we are a family and we will all fight for a cure and funding to help find one.

Thursday, February 28, 2002 at 11:17 AM (CST)

Hi All,
Today is not a good day at all and we are all very worried. We need lots of Prayers for our little one today. Micheala has been admitted back to 5200 as of right now. Keely woke up this morning and Micki had been bleeding small amounts were on her pillow and face. Keely called Dr Kurtzburg who seem to feel it was just her platlets were down so Keely took her over to the clinic right away. The tests came back and her platlets were fine the nurse felt it maybe Graft versus host but was going to call the Dr's in. The Dr, said he isnt sure what is going on and that he wasnt sure about the gvh but didnt feel it was that. however somthing is wrong. Micheala is very lathargic and her o2 sats were down and the were going to admit her for further testing and also to run an antibiotic. At he time of writting this this is all we know. Hopefullylater on today we will hear more and let you know. Please Please say extra prayers for Michaela and her family. This is very hard and stressful and they are with out family to help them through this.
Thanks

Wednesday, February 27, 2002 at 07:51 PM (CST)

Hello All,
It has been a whole week since my last update. Micheala is doing very well and we will continue to Pray for both of the babies to keep doing good. We are now at day +47 and counting we have 53 days left until she is 100 days post transplant and if all goes well they will release her on day 100. We sure are looking forward to that day. I have been getting some real nice pictures of her and pie. Grampa and I will be heading out in March and Me me is going too we all cant wait to get there.
I talked to Dr K, the other day just to touch base and she said Micki is doing very well. I ask you all for your continued prayers and thank you all for your Love and support.

Tuesday February 19, 2002 9:35 PM CST

Hi All,
Michaela is doing very well we are day +39 so if all goes well we should see them released home to Maine in 61 days. And we cant wait. You know I keep thanking God for all the help the kids are getting. Kelly is so good to the kids and I completley beleive she should be a social worker soley for these Krabbe families. The Hammonds have been there with the kids through it all, also Anne, Gina ,Micki G, Pam & Bill, Hunters Hope, there are so many of you that give us support and help along this journey that I want to cry. We have had a difficult year and at first it battered our Faith and tested it to say the least but all these angels keep comming from some where and you all know who you are and what you have done from the kindnes within. Thank you all.It is beautiful to see the world through diffrent eyes, That is what Pie and Micki & all the Krabbe children have taught us, sent from Heaven above to show us what really matters in Life.
It is hard to say the least, to be so far away and sitting here wondering how things are there and trying to do all we can to help and trying to get there once a month and hold every thing down here. I want to help the kids more and feel bad that iam un able to be there all the time. But thanks to so many wonderful people that care We here at home can feel some relief. The kids needed transportation in the worst way and were told they should not have Michaela on the shuttle bus due to the germs, this of course set the kids to worry, they found a vehicle reasonable and put some money down on it and it has been sitting waiting for the money they needed to purchase it, I will tell you that it has been taken care of and it is a true blessing, again thanks and Iam sure God will Bless you. I know I have been babbaling on here but Iam just so grateful for all you friends and loved ones.
Please keep them in your Prayers.

Wednesday February 13, 2002 2:19 PM CST

Graet news,
Michaela Lynn was discharged today at day +37. She is doing great her test came back and she is 99.5 percent donor cells and her wbc is 11. We are so pleased with her sucsess this far and the Duke team is great.
We know it is still a long road as far as all the care she needs to get through this. They will have daily visits to the clinics which from my understanding is an all day event and this will go on until she is released to come home at around day +100 so that means around April 21st their 100 days are up and they should be able to head home to Maine. We can hardly wait for that to happen. Iam counting the days I have alot of planning to do before they get here.As far as I know we will fly out to come home with them as they have accumulated a lot of things due to having to live there so long.I will fly with Keely and the Babies and grampa will travel with Kris to move things home.I have to do some fundraising right off so I will be busy doing that for now.Gosh I really dont know where to start.
I will keep you all informed of the up comming daily events with Micki.

Monday February 11, 2002 7:37 PM CST

Hi All,
Micki should have been discharged today but was not, she is doing great and we expect that she will be home tomorrow. You should also read her brothers page tonight as it will tell the reason she didnt get home today. I havent been home a week yet and I miss them already. I want them all home so bad. This is the hardest thing I think I have ever had to do.I am however grateful that Micki has done so well going through transplant. I fall goes well we should see them back here in Maine the last week of April or the very first of May. Please keep praying for our sweet babies we love them so much. Thank you all for your support.

Thursday February 7, 2002 1:43 PM CST

Hello,
Sorry to have left you all hanging a few days.
Things got hectic the last few days as I left Durham on Wendsday to head home. Its nice to be home but I want to be there to help also. I had a wonderful time being a grandmother, mother and motherinlaw while there and we had so many nice visits. The Hammonds came and then Ann Gina & Micki Gartzke alos it was a very nise surprise that Erica Sears came also. Kelly had us all over to her house Tuesday night for a get together supper it was so wonderful to get to know everone Pam Kristoff and Katie and Pams mother inlaw Ruth we are there too. I cant tell you how nice it was to chat with everone. On the subject of Michaela she is doing very well they didnt discharge her yet as we had thought they would. The Dr's want to watch her until the first of the week. She has just been eating for not yet a week and they want to make sure all is well he said they are impressed with her prgress, and that they justwant to be cautious so she doesnt end up backin there. We all agree we would rather they be cautious. She is doing very well and her cell counts are right up there. they have taken her off her pain medicine and they are starting to wean her off diffrent things.
I think today is day plus 27 remeber she can come home to Maine on plus 100 if all goes well so in 73 days we all hope to see them back here in Maine moving in to their new home close to Nannie and Grampa.
Michaela was suppose to go for a stroll today on the floor, she will sport a mask but it will be nice to get out of the room with her. Please keep the Prayers going.
I hope to have new pics in a day or so. Keep in touch. Luv to all.

Saturday February 2, 2002 11:36 PM CST

Hi All,
All is well here at Duke, Micki is doing very well. Looks like Wendsday will be discharge day. Everone is looking so forward to that. The kids still have a long road ahead as every day will bring trips to the clinics, there the Docs will do various lab tests and check her all over. They tell me it is usually an all day thing.
Also Micheala will have to be away from people as she has a supressed immune system.
she could get very sick, so it will be a full time job to keep her safe. We are so pleased that she has done this well and as you can see from the new pictures she looks good. The steroids are making her chubby but she is adorable, and she never lost all her hair! The whole family is lonesome for home and they are at best half way through being in N.C. Her cell count was 1.9 again today which is super good and considering she just had her transplant on the 11th of January. they have decreased her pain meds and her tpn and also have started a feeding regimin of one ounce every 4 hours to get her stomach use to food again as it has been weeks since she has eaten. Please keep them al in your prayers. I did add new pics. hope you like them

Thursday January 31, 2002 7:33 AM CST

Go Micki Go.......
Today is plus 20 and Micki's count was 1.7 this morning we are so thankful.
This little girl is working very hard towards getting discharged.
She is so Amazing! They are looking for a possible discharge date of Wendsday the 6th that is not a for sure thing but could happen say the Dr's who are super impressed.
Nannie has been enjoying being here with the babies and cant wait till they are back home in Maine, although that is a few monthes away. We need to keep praying that Micki will keep doing so well.
And I want to mention to keep little Ryan Kristiff in our prayers he is up here again due to some surgery. I will close for now and up date again soon.

Tuesday January 29, 2002 8:40 AM CST

Hello Again,
Micki had her surgery yesterday morning and
she did well. The operating staff told us she was a pistol...lol see we know she has a little tude.But Nannie says she has a reason to have a tude. they took both central lines out and put just a double lumin back in.She has some brusing from it.
The Dr's all say she is doing very well. and now for the news of the day.....
HER CELL COUNT WAS ONE TODAY HORRAYYYYY
super, awsome. Way to go Micki. If she keeps it up she may be discarged within a couple of weeks. well I will close for now and update again soon maybe even tonight.

Tuesday January 29, 2002 8:40 AM CST

Sunday January 27, 2002 9:28 PM CST

Hi All,
This will be quick as Iam with Micki.
They have decided this afternoon that she needs her central lines replaced, it seems she has grown and also they arent in good enough so they need to be replaced.
This makes me very nervous for sure.as she hasnt many cells and could get infection so easy. Please say lots of prayers. An ENT dr was in today and assesed her airway and said all was fine there he didnt see any thing wrong:) We have all been enjoying the Hammonds visit here and tonight we all had dinner together and Kelly and her family came also it was very nice.
Micki will also be getting blood tonight to aid with clotting in suregery tomorrow.
And her count was 0.6 today.
I will update this tomorrow after surgery.

Friday January 25, 2002 9:53 PM CST

Hello again from Durham,
Today is plus 13 Micki is doing well. today her cell count went from 4 back to 3 which they say is normal and she had to have platlets this morning. She really amazes me with all that is going on in that tiny little body. I dont think she is going to loose the rest of her hair she only lost this completly round spot on the top of her head and the rest stayed. the nurses said she probably isnt going to loose the rest?? We shall see. She is still a wee bit hoarse from the mucositis but is sounding better than the past two days. Here we take one day at a time pray for Miracles for both babies and Thank God that we have our Grandchildren to Love. I will update this again tomorrow some time and Kris is suppose to be down loading some pictures for me???? luv to all,

Thursday January 24, 2002 6:10 PM CST

Hello All,
Those cells are growing!!! today Micki was at .4 We are very pleased as are the Dr's.
Micki did however put in a painful sleepless night last night. Nannie and Micki spent alot of time rocking, they finally increased her pain med early this am. It was needed. So today has been better and she has rested alot. We are hoping for a better night. Keely Kris and Pie went home they are preparing for company tomorrow. Scott and Terry Hammonds, Angel Liams parents are comming to visit, so we are lookig forward to that.I hear from Phil that they are getting more snow back home in Maine! It just doesnt want to stop now.
Iam counting the days until our little family will all be back home in Maine. Grow Cells Grow......Thanks everone for all the support.
Julie

Wednesday January 23, 2002 1:46 PM CST

Hi All,
WOW...Horray for Micki, her count is .3 today!!! She sports a nice sign on her door saying just that! we are so very pleased and she is now on the down slope of the mucositis, she is still a little hoarse but she has started to drink some now which is a good sign.These Prayers are working.
Nnnie is spending tonight at the Hospitial with Micki:) And I dont share well....
Well I will close for now God Bless you all and Thanks for all the support.

Tuesday January 22, 2002 9:45 AM CST

Hi All,
I'm updating from Duke family room this morning. Keely is scrapbooking and Micki, Pie and dadda are all snoozing.
I have been enjoying the Gran babies so much.
Yesterday was a bad day for Micki she was having therapy and started breathing really strange and working so hard to breath. They did chest x rays and all came out fine, they really dont know what brought it on? It sure was frightning, and she slept non stop all day yesterday. They used blow by oxygen and her sats came right back up, and then we just shut it off and she seemed to do well. Micki has this big round bald spot on the top of her head and has hair every where else! She is absolutley adorable:)
The Dr's seem to be impressed with her at this point and just so you know we are are 11 days post transplant. We should be growing cells now I am going to find out today what her counts are and I will update this again to let you know. Yesterday her count was point 1..... I will check on her counts today. GROW CELLS GROW......
Micki now weighs 9lbs 10oz. She is just getting lipids and tpn as she is unable to eat due to the mucositis, she is in pain with that and getting fentinol for pain.But the good thing is she isnt on moraphine and she seems to be doing well with all that is happining to her. Please keep Praying and we will keep this updated more often I may even do and up date tonight.

Friday January 18, 2002 10:52 PM CST

Hi All,
Well it is late and here I sit.. Packing is all done and Iam ready for the trip.
I will have more to write once I get there and get a good report. I do know that the Dr's feel Micki is doing very well and she will breeze right through it. We are very optimistic.Micki is loosing all that beautiful hair:( I told her mom she is beautiful any ways so that doesnt matter.
I cannot wait to get there and be a grandmother again. I just wish Grampa could go, he is in march.I have a ton of questions to ask the dr's. They are going to wish I had stayed in Maine....
Iam looking foward to spending quality time with my sweet gran babies. Sorry I didnt have more to tell you all about Micki but I promise as soon as I get there I will ask lots and keep you all informed. I thank you all for your Love guidence and Prayers.
Julie

Tuesday January 15 2002

Hi All,
Thought I had better up date this page.
Micki is doing pretty good,I spoke with the kids late yesterday afternoon and it seems that Micki is unable to eat at this point as she has mucositis in her throat and it pains her to eat so she wont. They have her on things so she is getting nutrition. They also had to up her pain meds, as she is in pain from the transplant. From what we are told the next couple of weeks will be hard for her as side affects from the chemo will start showing.I feel Iam needed out there the kids are exausted and they have no one to relive them. I feel so bad sitting here not being able to help so Phil and I talked it over, I am going to go out there now. I plan to leave Saturday morning and stay a few weeks.I will feel better knowing that I can help them out. So Iam now making plans to leave. I will have a computer out there so I will keep the updates comming. Please keep them in your prayers.

Friday, January 11, 2002 at 08:32 PM (CST)

Hi All,
Today was the big day!Today was transplant day for Micki.......... today at around 11 am Micki was given her unrelated cord blood cells. It was a special day for the little family. Even little Pie was there while his sister received her special cells.
I wish nannie and grampa were there. Micki did really well as you will see from the picture. Also so far she hasnt had any real bad side effects from the chemo drugs. We know we arent out of the woods yet, but all is going well at this point. We need all your prayers. Keely and Kris were excited and they got news that Terry and Rebel Hammonds are comming to visit and they are so excited. I think that is so wonderful and then the following week my mom and I arrive as well as Anne,Gina and Micki Gartke
They really need this and I am so pleased.
well I will close for now and keep you updated over the weekend.

Tuesday, January 08, 2002 at 07:50 PM (CST)

Hello Again,
Today is negative 3 Friday Micki receives her transplant! Micki has done well so far.
Her dadda just told me that they Gave her ATG and that usually makes them very sick and thus far she has not spiked a temp which is the norm, not to say she wont but she hasnt yet. In fact he said that she was full of herself tonight and is even smiling and cooing. He said she looks well and acts well. I was glad to hear that for Things with Pie have been up setting me today.
If I could have I would have hopped the first plane to be there today. Iam so pleased that Micki is doing so good at this point. The thing is we are wondering if she has her days and nights mixed up Keely says
she doesnt sleep well and they are unsure if its the Krabbe or the meds but she goes to sleep and then wakes startled and crying just as Micheal always did? They offered adavan but the kids declined right now, and will wait and see. Please keep them in your Prayers they need them. I'll update again tomorrow.
luv Julie

Sunday, January 06, 2002 at 03:59 PM (CST)

Hi All,
Today is Negative 5.... 4 more days till Transplant.
They removed the NG tube last night and gave her the last dose of Busulfan. They also stoped the seizure meds. Today was a better day for Micki she was more alert and eating better.We realize that alot is going to happen but we are trying to take one day at time, there is just alot on our plates right now.It is a miserable day weather wise down in NC today cold and raining, so the kids arent far today.
I want to thank you all for your wonderful support, and all the Prayers. We will update this daily to keep you all informed.
Julie

Saturday, January 05, 2002 at 08:13 PM (CST)

Hi All,
Today is negative 4 day. in just a few minuites from now Micki well get her last dose of Busulfan.
Today how ever has not been a good day for us as Micki is sick from the drugs. she has some mucositis and she isnt eating good or if she does she vomits it all back up. So Keely and Kris are concerned about that.We know that is normal with all she is going through but it sure doesnt make it any easier. Keely and Kris have been switching nights at the hospitial, and that seems to be working out good for them.
The good news is that they think the infection in her lines is gone.:)
I wish I was there to be with them all. Keely says that i wouldnt want to see all Micki is going through.
Oh we had good news today little Ryan is leaving the hospitial. I was so happy for them when Keely told me. I will miss seeing them at the hospitial though. That is so awsome and he is doing so good.I think that the only thing that keeps us all going is the hope for the future. We are blessed to have such support that we do Family and Friends. I will close for now as I need to check in with Keely again. I will probably update this daily.
Julie

Wednesday, January 02, 2002 at 06:01 PM (CST)

Today it happened finally Micki was admitted and has now started her chemo.
We were beginning to wonder if it would ever happen as there has been things crop up. Her billiruben was a little high so they waited for that to go down and then. the kids got a call at 11 pm the other night and she had bacteria in her blood. I was stressing so bad and all that but it has turned out ok. They cought the infection before it got bad and so that was a huge relief. This afternoon they started her on her first drug and she gets that every 6 hrs by mouth.Keely Said she hates it and I said I dont blame her. poor lil thing. Iam glad that things got started I was beginning to get worried. Our news paper did another update article on them and it was nice. Just to up date everone.
I want to be out there now id Love to be able to stay out there and help.We miss them all so bad. I cant wait to get back ther and Anne, Micki and Gina will be there also:) Iam working on the plane tickets now!
Thank you all for checking in and I will be updating alot Iam sure. check out the pictures.
jULIE

Monday, December 31, 2001 at 04:29 PM (CST)

Hello,
Hope everone is having a Nice New year's eve?
I wish I had some good news to share but to be honest I dont. Micki has been delayed once again. They admitted her yesterday and prepared for chemo and at 2 am they did a billiruben test to seeif it was down. Turns out it was 2.1 and Dr wants it at 2 before they do the drugs. So they discharged her and will wait until Wendsday and try again.
The kids are down and I feel bad. I wish we could get this show on the raod. I do know that they"the Dr's" know best but, I am so worried.I do feel confident that the billiruben will be down on Wendsday. We all need to say a Prayer that it will be and that they can get things started. I hate beeing here and them there and hearing everything via phone. Micki and Pie are so sweet I hope to have new pictures on both sites soon. I wish i had better news tonight.But hey tomorrow is a new day and a new year!!!!!! Hugs to all and Happy new year.

Wednesday, December 26, 2001 at 05:48 PM (CST)

Hello There,
Thanks so much for all the nice guest book entries. Phil and I arrived home today. Our flight leaving Durham was over an our late so by the time we arrived in Boston we had missed our connecting flight home. and they couldnt gaurentee a flight today for where we needed to go as they were all booked up, so we opted to arrive in Bangor which is 2 hours from where we live and then the airport that we were suppose to go to was another 60 miles north and that is where out truck was located.......... Well Phils mother thank goodness came to get us and she also took Phil to get the truck. We are totally exausted.
Well enough on that we are home and we sure did hate to leave our little family. We had a wonderful time there all week and we had a nice chat with Pam Ryan's mom she is a sweetheart. Kelly had lent Keely and Kris Zigs car for the whole week and that was so kind as we were able to get around and see some things.If you havent met Kelly and Zig you have to they are wonderful.
Now on to Micki... she is Beautiful and her billiruben is down to 4 they want it at 2 before they transplant and so once again it has been delyaed until this Sunday the 30th.
I hate the delays but I suppose that they know what is best. I would feel better if she was in the Hospitial. I worry about the central lines and infection and well just about every thing.."so what else is new"
Keely and Kris are doing so good with the babies. And just so you all know Micki did have 2 lines placed. They were thinking of only placing one. Other that that this is all i have for updates at this time but i'am sure it will change again. If you go read Pies site you will read more of the saga. Love you all and we all hope you had a wonderful christmas:)

Wednesday, December 19, 2001 at 07:05 PM (CST)

Hi ALL,
Nannie & Grampa arrived safe and sound and exausted!!! we are having a wonderful time enjoying these beautiful grandchildren of ours! I felt that i should up date this now.
Micheala of Micki for short.... yes we were thinking of Micki Gartzke.:) Micki went in Tuesday and had two central lines placed sucsessfully by the Duke team and also had a spinal tap done the same day. They admitted her over night because she had has ansthesia. So we got her home again this afternoon. she is doing well they have held off on the chemo due to her jaundice, her billiruben is comming down so they feel they will admit her christmas day to start her chemo. It will be late afternoon that day though and the actual chemo wont start until Wendsday. I have to tell you that she is absolutley beautiful and looks like her big brother"Pie". Pie did something really neet for nana and Grampa, and you'll have to read his page soon to find out....
Well we will close for now and update again soon. Love to All.
Julie

Wednesday, December 19, 2001 at 07:05 PM (CST)

Monday, December 17, 2001 at 03:18 PM (CST)

Hi All,
Hooray!!! Nanny and Grampa leave early in the morning. I cant wait till we land in Durham. There has been a slight change of plans, Micheala will go in tomorrow morning and have her central lines placed and then be released to go home until her jaundice gets better. They want to know that her liver is ok. so she will start cemo next week. Keely and Kris were excited because we will all spend christmas together at the Ronald house rather than at the Hospitial.
I just want to be there. I keep getting these adorable Pictures and they make me so happy and sad all at the same time. I will try hard to keep this updated while we are there this week so everyone will know whats happening. The Calaman and Ritchie's want to wish every one a safe and Merry Chritmas you will be in our thoughts and Prayers..........God Bless you all

Thursday, December 13, 2001 at 07:42 PM (CST)

Hello again,
The Calaman's are very busy these days preparing for the up comming transplant.
every day is filled with important things to do. The kids are holding up well and I think they are being brave. I feel so bad that we cant be together to help them more.
I love to help with the children. and this place is so lonley with out them all.
Enough of that. Tuesday is comming and Grampa and I cant wait. Micheala is doing so good at eating and she has gained a little already. Her mom would like us to be there before they place the lines she wanted us to see how she moves and picks her head up. also we wanted to get to hold her before anyting was done. I will probably update this tomorrow night when they get back from appointments Take care everone, Keep them in your Prayers

Tuesday, December 11, 2001 at 08:05 PM (CST)

Hello Again,
Today was a busy day for the Calaman family they spent all day at Dr's. They seen Dr Kurtzburg also and that went well.
Micheala is a little jaundiced not bad but we are hoping that gets better before next week. Micheala will be admitted on Tuesday Morning and have her central line placed. At this time they feel they will only be placing one. I has something to do with a small hole in her heart that hasnt closed yet,I guess that babies are born that way and then it closes and hers just hasnt yet so they prefer to only have one line.
So any ways she will have that done Tuesday after she is admitted there. Then as far as we know she will start Chemo therapy on Wendsday. so that will start all things in motion. The unrelated donor is now being sought so we will pray about that that we should also get a good match.
Michaela loves to eat she is being breast fed and loves it! she wakes many times in the night but her momma says that is fine. It never bothered her with Pie either, so she is use to it. Iam so proud of my daughter she does well. She told me that they would be gone now most days all day. Going to clinics and all those things that need to be done before the big day.
Well that is it for today i should have new pictures tomorrow to add,also I again ask all for your Prayers for my sweeties.
Julie

Monday, December 10, 2001 at 10:02 PM (CST)

Hi Everone,
I made a mistake? I updated both sites tonight and some how I put Pie's here and I dont know what happened to Michaelas?? So I will start over!!
June the Transplant cordinator visited with keely and Kris tonight and gave them the test results.Michaela does have Krabbes.
We were hoping that maybe they were wrong and she was just a carrier? That was not to be. The kids are in good sperits though and June told them all that will go on. They will admit Micheala on Dec 18th . the same day Phil and I are due to arrive there. They will also place her central lines that day and begin the process.We miss them terribly and cant wait to get there. I hate this whole thing but we need to save this precious little girl. Keely said she has the prettiest hair and so much of it. Iam told Michael is loving his sister.Micheala is doing good though and momma says she loves to eat! We must thank God for what we do have and Pray for strenth. Thanks for checking in and i will update again soon.

Monday, December 10, 2001 at 09:11 PM (CST)

Hi All,
Thought I would update Pie's site also tonight. Pie is doing good we miss him so very much. This house is so gloomy with out all of them here. Phil and I have been throwing ourselves in to work. We talk to them several times a day. We cant wait to get there and hold our beautiful granbabies.
At least we will have Christmas with all of them. I'm told that Pie is quite taken with his little sister. Today he woke momma up and she said he stole her place in bed, and went right back to sleep! that was so cute she said that is all he seemed to want and so there they were in bed with dadda and all asleep.They will have a long road ahead of them down there and we will be Praying for strength. Thank goodness we have such a loving suportive family and so many wonderful friends. We love you all:) I will be adding new pictures as i get them I put a cute one on Micaelas page with pie hugging her check it out.
I will close for now and update soon. Love to All.
Julie

Monday, December 10, 2001 at 08:54 PM (CST)

Hello Again,
Michaela is doing great so far, she had her pediatrician visit today and it went well.
Keely is breastfeeding her hoping that will help with all she has ahead of her.
I know that I shouldnt have gotten myhopes up folks but i dared to dream tht Michaela may not be Krabbe affected i knew there was a very slight chance that the test could be wrong or that she could just be a carrier.
That was not to be. June the coordinator met with the kids tonight and went over everything and also letting them know that the test was back from Dr Wenger and it was Krabbe positive. So we must again go on with what must be done to save her. Next Tuesday the 18th is the day Phil and I fly in to Durham and it is also the day Michaela will be admitted and have her central lines placed. And from there she has a long hard road. Keely & Kris are holding up pretty well. They are enjoying the children so much, I am so proud of them.
The breast feeding is going well. Michaela loves to eat! Phil and I just cant wait to arrive there and be with them for Christmas we have one more week and it seems like forever. Well i will close for now and will update this as I get more information. Please say a Prayer for all of the Calamans.
God Bless you all

Friday, December 07, 2001 at 06:36 PM (CST)

Hi All,
Michaela Lynn Calaman arrived 2 weeks early on December 6th weighing in at 6 lbs 11 oz and she is a sweetie. Keely had a nice labor and is breastfeeding for the first time as she feels this will help Micheala a whole lot. They should be able to go home tomorrow to the Ronald mcdonald house. They were told they would be placing the central lines around the 17th of this month and admitted to start her Chemo around day 14.
She had some tests done today. Keely is missing being home with pie. And Kris has been doin very well taking care of things with Keely in the Hospitial. I will close for now and keep updating this often. Please keep them all in your prayers.
Julie

Monday, December 03, 2001 at 01:38 PM (CST)

This will be the future site for Michaela Calaman whom is expected to be born any day now and is affected with Krabbes disease. Please check often for updates as we near her Birthday.

Click here to go back to the main page.

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