History

Tuesday, November 30, 2010 6:49 PM CST

Hi Guys,

I know I have not updated in a while, it is because all you would have heard is scary stuff and me just beyond mad!

Sam's port scar ripped open 16 days after her surgery. I have never been more freaked out. I was giving her a shower and pop... her chest opened up and I could see a hole in her chest and was looking at her port inside her chest. I went white and Sam looked down and started crying "OMG I can see my port!" I was running around screaming we all just need to breathe, trying to get steri strips to close the wound, and trying to convince Sam that everything would be okay. Holy Buckets!

After getting the wound closed, I call the doctor and we planned to meet in the ER to get her into the OR ASAP and have the port moved or backed out of her right atrium and the wound stitched. No, you did not read that wrong. Her port line is in her heart and twisted! And it gets better….

So I arrive at the hospital and the doctor tells me that yes he knows the port line is in her heart but it is not twisted and he is going to just stitch her up and she will be fine. “What the Duck?” Okay someone is lying to me or confused? The Cardiologist is telling me the line was in her tricuspid valve and is now has back out of the tricuspid valve and is twisted in her right atrium. The vascular doctor is telling me no! It is not twisted but yes it is in her right atrium but only slightly and not twisted and we do not need to do anything??? Is your head swimming as bad as mine is yet?

So with many other phone calls and doctor’s visits I did not know what to believe but my gut was going with the cardiologist. So flash forward today. Sam had morning appts at the hospital and the cardiologist in the afternoon. At that appt I had him bring up the x-rays so I could see with my own eyes what was going on and sure as poop. Not only was the port line in her tricuspid valve at the start, but it is now twisted in her right atrium!!! None of this is leaving me with a happy feeling and yes I am pissed.

Right now I am stuck at CSMC and stuck with this doctor until January when I switch over to the PPO again... But I am going to put my thinking cap on and come up a plan because I am losing it and want to cry or hit someone (thinking of someone in a white jacket ;)

Will update when I know more and can problem solve this one!!!

Love and Hugs,
Tami

Thursday, November 4, 2010 9:43 AM CDT

Good Moring Everyone,

Poor Sam looks like she was in a horrible accident. She has 6 incisions in her upper body plus the heart incision that goes from top to bottom. She is so bruised from the port surgery (and all the drugs they gave her during heart surgery) that she is black and blue from her bellybutton up and very very sore!

I was able to access her port yesterday (stitches, swelling and all) and ran her ERT without any issues. I know that will help so much with her healing process and the headaches. We see the cardio and port doc on Monday. She will have the stitches removed and that will make both her and I feel better. We are going to take it easy this week and thank God for our blessings of a new heart and working port.

Have a Great Weekend and I will update you all next week!

Love and Hugs,
Tami

Wednesday, November 3, 2010 2:04 AM CDT

Hi Everyone,
Holy Buckets what a long day, we just got home. Due to a very late start for her surgery we did not get into the OR until 4:20pm.

She did great but had to be intubated for the surgery. They tried LMA but could not keep a stable airway and good sat levels. They had a very hard time but got the job done. Thank God.

The doctor was unable to keep the port in the same location as the old one and that made Sammie very sad because it just caused another scar on her already scarred chest. I am not sure if I am going to be able to access her port tomorrow? It is bleeding from the incision site which is right on the access site. I will take off the dressing and if I think I can access it without too much pain for Miss Sam then I will try. But I am not mixing meds until I am sure I have her accessed.

Well I am going to try to get some sleep. I will update after I figure out her port tomorrow.

Love and Hugs,
Tami

Friday, October 29, 2010 6:40 PM CDT

Hi Guys,

Well, we spent all day at the hospital and we are scheduled for port surgery on Tuesday. Oh happy, happy, joy, joy (NOT!) I am still just pissed off that she had to have another surgery because of their mess up.

We are happy that the doc got us in ASAP and really move everything around to see us and get her port replaced. I liked him and he is going to try to place the port in the same location as to not add even more scars to her already scarred chest.

So if everything goes well we will be doing her ERT on Wednesday and she will have only missed 1 1/2 treatments; And for that I am doing the happy dance!

I will update if anything changes before Tuesday else I will update from the stupid hospital. Can you tell I am sick of the hospital?

Love and Hugs,
Tami

Wednesday, October 27, 2010 7:33 PM CDT

Hi Guys,

We had our follow up and echo with the heart doc today. Everything looks good, she is seeping from the lower part of the wound, so we need to keep an eye on it, but if she does not get infected we are good. We also have an appt with the port doc on Friday afternoon and I pray we get a surgery date for next week.

So heart is doing good just need to fix port!

Love and Hugs,
Tami

Tuesday, October 26, 2010 5:47 PM CDT

Hi Guys,

We are doing good just busy with scheduling post-op appts and scheduling her port surgery. Tomorrow we have her echo and follow-up with heart surgery at the hospital. She is draining a little from the site and I will be happy to see the doctor tomorrow. I am waiting for the port doc to call me back about scheduling that surgery and will update when we have more information.

On a very very sad note: Kraig lost his battle to this yucky disease today. Please keep his family in your prayers today and everyday. Kris We LOVE YOU and I am so heartbroken that I cannot attend the service. But please know you are in our prayers!

Love and Hugs,
Tami

PS Have I said how much I hate this disease??

Monday, October 25, 2010 5:10 PM CDT

Hi Everyone,

This is going to be short. OMG we are all so tired. I took 2 naps yesterday and really it is just the ongoing stress level that is kicking my butt. Living in the hospital was much easier at 22 then it is at 45. My old body just does not rebound like it did on the old days. I just cannot live on 1 hour sleep per night anymore.

Sam is doing good, lots of pain from MPS and her past neck surgery, sleeping on the back due to the heart surgery is really jacking up her poor body. But overall everything is going well... Spend most of the day waiting for the doctor to schedule us for port replacement. The doctor called again as told me the PC does port replacements. I am very confused.... They told me on Wednesday that they did not replace ports, so we will see how messed up this is going to get over the next few days? Nothing is easy right? I am just happy her new heart is doing so well and will fight the port battle again tomorrow.

Please keep her in your prayers!

Love and Hugs,
Tami

Sunday, October 24, 2010 10:43 AM CDT

Good Morning Guys,

Well, Sam is going to have to have her port replaced. I accessed her this morning and it is gone. Nothing goes in and nothing comes out. So tomorrow I will be calling the doctors to schedule surgery. Wednesday we will be back at the hospital for post-op testing and I have to schedule with the other doctors for her follow up appts. The list is very long of appts this poor baby needs and to add in another surgery is going to suck! Poor Sam just cried this morning when her port did not work. She is really sick of hospitals and surgeries and more scars. It is breaking my heart!!

Love and Hugs,
Tami

Saturday, October 23, 2010 12:48 AM CDT

Hi Guys,

Thank you all for your wonderful birthday wishes. I wanted to respond but as you will read below it was not a great day. But the love and support for us this last week have been so wonderful and the best birthday present ever is my beautiful daughter and her new heart!

Let me start this rant off with… Sam is doing great and we are home. I am so very happy with her heart doc and his wonderful and different approach to MY MPS patient. So far so good and she is doing so GREAT…. Now let the rant commence. ..

In all of my adult life I have never been more frustrated at a group of nurses and doctors. The fact that we were told that Sam was having her port removed during her heart surgery stressed me out. I needed to make sure her port was in place before we left the hospital. To find out that it was still in place the next morning after surgery was even more stressful. My questions were; was that port still intact or God help us not attached, did the surgery twist or otherwise make the port unusable, if that is all good then... my next biggest fear was did they hep-loc it?

And the fight began… While still in the ICU I begged them to access her port ( I could go on and on about my yucky experience in the adult cardio ICU but I will do that another day) they fought both Donny and I, saying everything was fine and there was no need to worry. We then were transferred Tuesday night to the Adult cardio floor where things like ports, 19 year old girls, and MPS are something akin to Mars and a black hole… and then the shit hit the fan!

As Wednesday morning started I knew we were in trouble. I started to beg to have her port accessed. I was told they were working on it. I call and had home supplies delivered but due to a shipment error I was unable to use my supplies. So I begged for the procedure center (PC) to rush to access her port (Note: the procedure center at CSMC is the most arrogant non productive department I have ever seen and we just spend 2 hour hours there last week in their office, just so we could draw blood from Sam’s port for her pre-op tests and they same the group that did the kids ERT in 2003/2004 and you all remember how wonderful that was) so, PC came up and stated they also did not have the hep-loc (I guess this the more guarded drug than crack in this hospital) and they would order it and be back … Then they got word to us that they would not be back until the morning…. As Wednesday turned to Thursday noon without anyone showing up to access her port, the stress level was beyond DEFCON 5! I was ready to look up the launch codes myself (I am sure there is a quick code on the internet that I could look up myself and launch them… Right?;)

So late afternoon on Thursday, the PC nurse showed up without hep-loc and tried to get blood flow from that accessed port, with no luck. I really liked her but she did not have hep-loc(WTF)on her and stated she was ordering from the pharmacy and would be back… LAST I SAW OF HER! Next I heard was 9am TPA scheduled. Okay… Now I was beyond pissed level DEFCON 5 when they did not show up until almost 10am and Sam’s port was totally blocked. I talked her into using a 1cc to upload the TPA and she got 2cc into the port and left saying she would be back before 12pm. She did not show up until 12:30 (which was fine the longer in better right?) but of course the TPA did not work and she left saying we would be taken to the PC around 1-1:30pm. So we waited and waited and waited and waited some more. At 3pm(is there at DEFCON 6? if so that is where both Donny and I were) I told the nurse that it was Friday and we needed to get into the PC ASAP.

At 4pm they called and said they were too busy and would not be able to see us until Monday. WTF (is there a DEFCON7?) We were given 2 options, go home and then try to get into the PC on Monday or spend the weekend in the hospital and again try to get into the PC on Monday. Guess what we picked? Now one little thing I did not mention was Sam still had her central line in her neck that the hospital was screaming needed to removed on Wednesday due to infection issues and we had to wait to have it removed before we could leave last night. So around6-30 -7pm we got bail money and were released from the crazy jail.

know this sounds crazy to be pissed off about something so little after major heart surgery… but when you need to give your child ERT to save her heart and her life and then scream and fight to insure her port was working for 4 F’ing days, it really makes you crazy to have to fight for something that is really common sense and should have been check within 12 hours! Rant done and note Sam is doing so much better now that she is home!

Love and Hugs from a very stressed out Mom,
Tami

Friday, October 22, 2010 8:35 AM CDT

Good Morning!

Sam is doing GREAT! I am in awe of her and her strength. She is almost off all pain meds and is moving around much better. Heart rate and BP are all in normal ranges and O2 was normal all night on room air! Doing the Happy Dance!

Sadly we are having port issues and will be working all day on resolving it and getting it working again. If we are unable to get it working she will have to have surgery to replace it this weekend. So let pray the TPA works today and we can get it working. If we can we will go home tomorrow; if not we will go home after it is replaced.

Well, the doctors are starting their rounds. I will do my best to update later today.

Love and Hugs,
Tami

Thursday, October 21, 2010 9:17 AM CDT

Good Moring Everyone,

Poor Sam had a bad night. As some of you might know, until we stated ERT both Sam and Jacob were on O2 at night (well Sam was, Jacob was on Bi-pap) anyways, we took her off O2 yesterday and put the pulse/ox on last night. I expected her to desat because of just having surgery and she did. She was holding mid 80’s with episodes into the low70’s. So if this keeps up over the next few days I am sure we will come home with O2 at night. This is going to piss her off but I am sure it is only going to be a temporary problem.

She is also retaining fluids. She was so mad at the nurses for telling her she needed to go to the bathroom. She kept explaining that she really did not need to go. They brought in the ultrasound and she felt vindicated when it showed her bladder was empty ;) So we will be starting her on lasix in a few minutes.

I slept 4 hours last night. I kept my headphones on so I did not have to hear the constant alarms of the low O2 levels and I feel so much better today! It was the first good night sleep I have had in over 4 weeks so I really needed it!

Well, today we are doing another ultrasound on her heart, accessing her port, and walking the halls. If all goes well with the port we will take out the central line and that will make her neck feel so much better. It is hard to keep your neck still after have c-spine surgery. She is very sore.

Gota go, I was trying to get another shower this am but It is not looking good. For the staff’s sake, I will try at lunch time. ;0 Will update in the afternoon.

Love and Hugs,
Tami

Wednesday, October 20, 2010 10:27 PM CDT

Hi Guys,
I know I have a hundred phone calls to return but be patient with me, I am having the hardest time just calling Donny and Jacob. Sam’s room is a non-stop flood of specialists following her and I swear every time I try to go to the “little girl’s room” someone new is walking in. My bladder is going to explode... and boy what a mess that would be :)

Well, Sam is doing better and even started txt’ing this afternoon. For a teenager this is a very good sign! They had her up and walking today and she did great. Doing the happy dance!!!

Sam has no more fever. That makes all of us so happy. Her pulse rate is still high but getting better and heart beats are normalizing too. She has one HELL of a scar. They removed the bandage and holy buckets. Since it would not be right to take a picture and post it on the net (she is a girl so I think that would be porno ;) just take my word for it the scar is going to be much bigger than we thought (sad face here). Oh well she looks cute no matter what size scar she has!

Okay I am so tired. God willing both Sam and I will get a little sleep tonight. Tomorrow we are going to access her port (a very long story) and make sure it still works. Pray hard for that one else we will be in the OR again before we leave; replacing it. YUCK!

Love and Hugs,
Tami

Wednesday, October 20, 2010 9:40 AM CDT

Good Morning Guys,

We did get “some” sleep last night, well as much as you can in the hospital! The nurses are very good on this floor and we are just working on getting Sam better so she can come home.

We are working on getting Sam’s pain back under control. She slept through the 3am drugs and was in so much pain at 5:30am and now we are just trying to play catch up to get the pain under control. It is a long story on why she does not have a PCA but I am going to get that fixed today.

As for her heart; it is healing well. She is still on antibiotics but the fever is holding at 100.0 so I'm not worried yet. She is off the insulin drip and that is a good sign of healing well. We did the echo yesterday and both valves are working great. I cannot remember if I posted this but she has a human valve in the pulmonary valve’s place. So no piggy or moo moo valve for her and I was looking forward to making animal noises at her when she felt better ;)

So now we just wait for her to heal and cross the next few steps before we get bail and released ;) Now that we are in a real room I will be able to update more often. Although Sam keeps me jumping most of the time. .. I will update later!

Love and Hugs,
Tami

Tuesday, October 19, 2010 8:28 PM CDT

Too Tired toooooooo Type!

This is going to be short. We are out of the ICU as of 6pm. Sam had all of her drain tubes removed. The only lines in her are the central line and the pacemaker (which is not being used, it is just there in case it is needed.)

We are both so tired. I am planning to get her food and we are both going off the dreamland.

Everything is going smoothly. She still has a low grade fever but she is sweating so I am going to cross my fingers that it will be allllll gone by the morning. Her pulse rate is higher today but not as bad as yesterday so I think everything is moving in the right direction.

Please keep the prayers coming and thank you all so much for your support!

Love and Hugs,
Tami

Tuesday, October 19, 2010 7:32 AM CDT

Good Morning part 2 ;)

Miss Samantha is doing much better. Her pulse rate has drop to 99-100 this morning and fever is down to 100.00 Doing the happy dance. It looks like we will be taking out the chest tube today and Xray was just here and I am sure her lungs look good.

Sam wanted me to tell everyone that she is doing good but mad because she did not get to "time travel" (sleep for a few days :)

Well EKG is here will update later!

Love and Hugs,
Tami

Tuesday, October 19, 2010 3:10 AM CDT

Good Morning Guys,

Well, I think it is morning really not sure anymore. Boy I hate the ICU and miss the ped nurses. I may kill the day charge nurse and the night nurse is.... well I just cannot say the words it would be improper on the net ;)

Okay on the Sam update... Thank you Jennifer for updating for me...

Sam is doing quite well. She is running a fever of 102 and her pulse rate is down but still high (120 while sleeping). Her BP is looking the best I have seen it in awhile (106/64) Why she has the fever no one quite knows yet. They put her on antibiotics, given her another 2 units of blood and they also have her on a insulin drip, plus a host of other meds that I am too tired to list and too boring to you the reader to read ;)

She is not bleeding much through the drain tube and if everything keeps going as planned she might have it removed tomorrow. X-ray is coming in around 4am to check her lungs again. I think that her lungs have not fully inflated to normal yet and that is what is causing the fever. She is being a good trouper and is doing her breathing exercises, so I am hoping that the fever resolves itself later today.

I going to log off and try to get some sleep. Fat chance in the ICU… but one can hope ;)

Love and Hugs,
Tami

Monday, October 18, 2010 7:51 AM CDT

We are at the hospital and waiting to be called back. Sam is not a happy camper nor am I. I will be updating all day as soon as I know anything new I will post it. Boy do I need a nap already!

7:21 They just took her in the OR. Poor kid is very scared. We will not know exactly what procedures are going to be done. If we go with the tissue valve/s we will be doing 3 valves (if the doctor decides the mitral valve need replacement too. if artificial valve then only 2 valves will be needed to be replaced. The third valve is the pulmonary valve using the Ross procedure. So to say we are stresssssed is an understatement. They will be giving me updates throughout the procedure. So when I know something you will too.

10:30 Sammie is doing well. They have her on the heart/lung machine since 9:30am They are still unsure about the mitral valve but are doing the Ross procedure for the aortic valve. So we have 2 valves so far. 1 moved and one new tissue. Will update again when I know more.

11:30 aortic valve is in place. New tissue valve for pulmonary valve being installed as I type. No mitral valve needed at this time. So she will only have 2 valves replaced. They are guessimating they should be done at 1-1:30pm.

12:20 done with 2nd valve, then just attached the jumper cables and checking for leaks ;)

Heard from Tami tonight!!! (this is Jennifer) Sam is in the ICU which is expected... Tami is unable to get wireless so I am updating for her. Sam is doing really well for the trauma her body has been through today, she is running a temp, and her heartrate is high but they think that is because of the temp. She is extubated. Her heart surgery went well, and it looks like everything to do with her heart is good! Prayer requests that her temp goes down and her heart rate goes down, and just for continued good function of her heart and good pain control!! WTG Sam! We love you and we are in AWE of how strong you are!!!

Saturday, October 9, 2010 6:38 PM CDT

Hi Guys,

Wow what a crazy month. Where to start? Well, we did Sam's heart cath test the Friday before the conference. What long day but thankfully no bypass surgery is needed and she did great. Conference was wonderful and as crazy as the walk/run was, the event was a success. Hat's off to Knott's Berry Farm for hosting us and being so wonderful. Thank you to all my wonderful volunteers and sponsors. I will never forget this once in a life time event!

This week I have just been cleaning and preparing for the upcoming surgery and trying to clean up from the last month and end of event walk/run stuff. Holy Buckets my house was a mess! But I can see the kitchen table again so I am feeling better.

Now for this upcoming week. Sam's B-day is on Monday. We are going to Bucca (her fav place!)for supper. Tues is pre-op all day, Thursday is pre-op all day and then the weekend off....

Surgery is Monday October 18th. I will be updating during the surgery. Thank God CSMC has wireless internet and if I do not crazy during surgery I will be updating. If I DO go crazy I will have Jennifer update for me.

For my family. Please check here before calling Donny. If I have not updated then nothing is new... If something bad happens you will know about it before it is posted online.

I love you all and keep the prayers coming.

Love and Hugs from a very stressed out Mom,
Tami

Thursday, September 9, 2010 9:05 AM CDT

Good Morning Everyone,

Wow, it has been a long time since I did a real update. Sadly when I have to do an update it means something medical is going on with the children.

Today that is the case.

Samantha is going to have double valve replacement on her heart. We will be doing the surgery on October 18th and I will be updating from the hospital. She needs both her aortic and mitral valves replaced. At first we believed she would only need the aortic, but in typical Sam fashion she had to add a twist! Poor baby!

Right now we are busy with the LA run and getting all the pre-op testing done. So to say we are busy is an understatement, but it is what it is, and we will get through it.

Today I am planning to buy Sam a new car. To add more stress to our life Sam also totaled out the Taurus! Life is an adventure, right?

Well please keep checking back for updates on Sam and I will be updating during her surgery and for the days and weeks that follow. And please keep her in your prayers!

Love and Hugs,
Tami

Wednesday, August 4, 2010 12:45 AM CDT

Most Americans are not aware that a child is born every 30 minute with a lysosomal storage disease. MPS (mucopolysaccharidosis) is one of these rare diseases. Children are diagnosed each day and suffer physical pain before they lose their battle.

The National MPS Society has been working for 36 years to support these children and their families from coast to coast. We provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases.

On October 3, 2010, come walk and run in Knott's Berry Farm Park and Walk for A Cure for MPS and related diseases. Every single dollar raised is directed to research. Help us in the fight against rare diseases. Come make a difference, because children have a right to life.

For more information please visit www.mpsrun.com and make a donation online or contact the Society at 919.806.0101 for details on how you can participate in the Knott's Berry Farm Run and help find a cure for all the children suffering from MPS and related diseases!

Thursday, October 1, 2009 9:20 PM CDT

National MPS Society’s LA Run
Date: October 17th, 2009 8:30 am at Oak Mesa Park in La Verne, CA (5400 Wheeler Ave)
Coordinator: Tami Slawson, Race Director, National MPS Society
1407 Foothill Blvd #28
La Verne, CA 91750
Tami@mpssociety.org
909-223-7132
www.mpsrun.com

Most Americans are not aware that a child is born every 30 minute with a lysosomal storage disease. MPS (mucopolysaccharidosis) is one of these rare diseases. Children are diagnosed each day and suffer physical pain before they lose their battle.

The National MPS Society has been working for 35 years to support these children and their families from coast to coast. We provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases.

On October 17, 2009, come walk and run in the beautiful foothills of La Verne and Walk for A Cure for MPS and related diseases. Every single dollar raised is directed to research. Help us in the fight against rare diseases. Come make a difference, because children have a right to life.

For more information please visit www.mpsrun.com and make a donation online or contact the Society at 919.806.0101 for details on how you can participate in La Verne and help find a cure for all the children suffering from MPS and related diseases.

Tuesday, August 18, 2009 9:30 PM CDT

Hi Guys,

Quick update Jacob's port is not working and will be off to the hospital tomorrow. Will update when I know more!

Love and Hugs,
Tami

Thursday, March 19, 2009 4:30 PM CDT

Hi Guys,

I know I have not updated. Sammie is doing great and is back at school. Let's pray the decompression holds and we do not have to go back in and do fusion. Please God.. Sam needs a break! But she is healthy and Happy! Thank you GOD!

Sad News update from the LA Run world.... Both Noah Scott and Carolyn Faust died on Saturday. Noah's service is tomorrow and Carolyn's is Saturday. The Faust Family moved to NM in 2006 so I will not be able to attend her service but since most of their family is in CA, I think they are flying to CA next weekend to have a dinner. I hope to attend the dinner in Carolyn's memory.

It has been an ugly week for the National MPS Society. As we have lost 8 children. Please keep all our MPS/ML children and their families in your prayers!

Love and Hugs,
Tami

Sunday, March 1, 2009 5:44 PM CST

Hi Guys,

Boy we have been busy. Taking care of Mom and Dad, Sam, and ERT treatment on different days can take its toll on me (and Jacob ;)

First thing first.... Sam is doing great. She still has her stitches and is still on house arrest (her words not mine :) But trust me, this house has more kids in it than the high school. LOLOL Ms Bush has been by to keep her updated with her school work and she is recovering nicely! She did have some trouble after coming off the steroids, rash, head and neck ache. The rash is gone and I am sure in the next few days the headache will resolve itself.

We see neuro on Thursday, which happens to be the same day Mom has Surgery on her eye. Jacob gets the pleasure of dealing with Dad, since I will be in LA with Sam. I will take them to the doctor on Tuesday and Friday. So keep us all in your prayers ;)

Well gota go (doing Sam's ERT)and still trying to digest breakfast from going out with Mom and Dad, (note to self….just say NO to the chili cheese omelet) LOLOLOLOL

Love and Hugs,
Tami

Friday, February 20, 2009 6:01 PM CST

Hi Guys,

This is going to be quick because I have only had than 5 hours sleep in the last 4 days. But WE ARE HOME!!!! Doing the Happy Dance!!!!

Sam is doing GREAT and has friends over. I am sorry about not being able to update. It was a very busy hospital trip and I could not get Sam's computer to log on to the CSMC internet. Hence, I gave up my computer to her and no MOM internet!.!.

Thank you all for your prayers. I will update on our adventures later.

Love and Hugs,
Tami

Wednesday, February 18, 2009 9:36 PM CST

Hi Guys,

It was a very long day. Sammie's surgery went very well. She went into the OR at 8:15 and was not extabated until 1:00pm. Can you all say very scared MOM! The doctors took her airway issues very serious (thank GOD!) We are in the PICU and will going for an MRI sometime tonight. She is not in a lot of pain, thanks to her pump friend PCA;) and the fact she has had way worst painful surgeries than this one. Input sad face here!

We should be out of the PICU tomorrow if everything keeps going well (I know it will) and I will have more access to the net once we are in a normal room. Her sleep apnea is acting up but on O2 is doing good with levels at 95. That never stresses me, she has had apnea since she was born. But it always get the doctors and nurses panties bunched up. LOLOL
Okay, I have not slept in a week (not that I am going to get any in here;) but I am going to try to rest before the MRI.
Please keep the prayers coming!

Love and Hugs,
The Slawson Girls!

Wednesday, February 18, 2009 4:22 PM CST

Hi! This is Jennifer. Sam is out of surgery and is doing ok. She is in the ICU and will likely be there for a day or two. Surgery went well with no fusion needed! I will update more later ...

Sunday, February 15, 2009 5:32 PM CST

Hi Guys,
Well, I had my first real MPS board meeting. It is so wonderful to be a part of such a hardworking, caring, and dedicated group of people. It is an honor to be working on the board!!!!!

Now for a Sammie update…. We did pre-op on Friday (What a yucky long day!!) She will be in the PICU for one day and if everything goes well in a regular room the next day. She will be in the hospital for four days min. After that we will play it by ear.

The hospital has wireless access and I will be updating every step of the way. On Wednesday, I will have Jennifer do the updates because there is no wireless in the ICU. Once in a regular room I will keep you all updated. Please keep the cell phone calls limited due to the fact I will not have a chance to charge my phone until we get to a regular room.
Please keep Sammie in your prayers. I hate surgery on our babies!!!!
Love and Hugs,
Tami

Wednesday, February 4, 2009 4:15 PM CST

Hi Guys,
Well, we have a surgery date of February 18th. The good news is that Sam only needs to have decompression surgery and not fusion of her cervical spine. She will be in the hospital for minimum of 4 day and will be recovering for 2 weeks or so.

We are working very hard to make this non stressful for her (if that is possible) and we are going to be very busy next week do all the surgery prep. Just keep our whole family in your prayers.

As for me I leave to NC tomorrow, for my first BOD meeting. I am looking forward to continuing the wonderful work our BOD’s have done and will work hard to continue to make a difference in our beautiful MPS and ML babies lives!
I will update when I get home on Sunday/Monday. Please keep all our babies in your prayers.

Love and Hugs,
Tami

Wednesday, January 28, 2009 3:15 PM CST

Hi Guys,

Once upon a time, a long time ago (November 2008), I found myself enjoying a slower paced life. A life filled with extra time and volunteering for the National MPS Society, Make A Wish foundation, and taking care of my wonderful in-laws. I was enjoying my new found freedom because for the first time both children were in school and the walk/run was finished. Then this stupid disease called MPS, again slapped me in the face and reminded me that MPS is a yucky disease that my babies will have to deal with forever! Have I said how much I hate MPS??

Last Night while talking to my fellow BOD’s, Sammie called crying because again she could not start the car. The reason…. Her spinal cord compression is getting worst. We see the doctor on Tuesday and will have surgery ASAP.
But because of this running issue with starting the car, I am going to make her happy and will install push button starter for her car tomorrow. So even after the surgery, she will never have to worry if she will or will not have the strength to start her car. Push a button and problem solved! Donny and I may not be able to cure MPS but we can solve a problem to make our babies lives a little easier!

Please keep Sammie and all our MPS and ML babies in your prayers.
I will update you all after the neuro appt. OH and Mom’s Eye surgery is not scheduled yet. I will update when I get a date!
Love and Hugs,
Tami

Sunday, January 25, 2009 5:29 PM CST

Hi Guys,

Many of you have attended the Walk/Run and have seen a young man with a video camera and passion. Well, he has worked very hard to bring awareness to MPS disorders and fund research to help the children still waiting for treatment. We really are making a difference with COURAGE!

Love and Hugs,
Tami

Thursday, January 22, 2009 4:53 PM CST

Hi Guys,

Mom's eye appt went well. She will be having surgery on the right eye within the next two weeks. MJ the ativan for Dad only made it worst. Just because it made him colder than normal, and you know how he hates being cold! hehehehehe

As for Sammie, we will not know when surgery will be until after the Feb 3rd's appt. I sadly think we will need this surgery sooner than later. She can't even start the car anymore which is what started this whole road we are now walking.

I will update as soon as I have something to update.

Love and Hugs,
Tami

Monday, January 19, 2009 4:18 PM CST

Hi Guys,

I hope everyone is doing great. We had a wonderful weekend with the MJ and everyone came over on Saturday. It was so much fun to have everyone over and spend time as a family. I do miss the old days of the large family Sunday dinners. And we do miss you all. Maybe this Summer we could get everyone down???

As for us we are doing good. Sadly, Sammie is again facing surgery. Poor kid never gets a break. We see Neuro again on Feb 3rd and will be scheduling spinal decompression surgery. I am doing my best to plan this around school and the Britney Spears concert. I am renting a limo for her and Cody to give them both something fun to look forward to.

So Please keep Sammie in your prayers. She is just so sick of Doctors and MPS, tumors and skin grafts! That crazy hair shaving girl (Ms Spears) better put on one heck of a concert!!!!!! LOLOLOLOLOLOL

OMG PS.... Lost Starts on Wednesday!!! I am so happy!!! LOLOLOL

Love and Hugs,
Tami

Tuesday, January 13, 2009 5:30 PM CST

Hi Guys,

OMG what a long day. I am soooooo tired. Poor Dad was having a very bad Alzheimer’s day and was not a happy camper about leaving the house. It was day two of bad days and leaving his house so..... I do understand!!!

First things first... Mom is doing well. The laser surgery went fine but her eye is sore. She developed glaucoma and it quickly created pressure behind her cataract. They hooked her up to an IV to reduce her eye pressure last night. The doctor checked her pressure this am and she was down to 14 and we were off to out-patient surgery center for laser surgery on the cataract to make an opening to keep her pressure down. We will see the Doctor again on Thursday and at some point we will have the cataract removed. So Slawson family, do not worry. Everything is fine!

Now let me try to do an update. It has been a long time since I have done a real update.......

October...The Walk/Run was wonderful as always. I found out that I was elected to the BOD for the National MPS Society. I had my first baby board meeting in October and became a member as of January 1, 2009! I attend my next meeting on Feb 6th in NC.

Christmas was Wonderful! Jacob and Sammie are doing GREAT and we got a 42 inch flat screen for the living room, new tires for Jacob truck and Itouch for Sammie.

January 10th I attended the Courage Gala. This was the most wonderful event I have ever been blessed to attend. Yes, even better than the Beverly Hills Hotel event!!!!!! You can read about it at www.couragemovie.com. They raised over 9 thousand dollars for research but more importantly was the awareness that was raised, it surpassed the dollar amount a million times over! It was sold out and over 500 people learn about and asked question about MPS disorders!!!!!!!! Oh it was just wonderful!!!!!!!

Well I gota get dinner ready. Have a Great Night!!!!

Love and Hugs,
Tami

Monday, January 12, 2009 8:06 PM CST

This is going to be a quick update. I know I have been too busy to really do an update, but things have been both normal and crazy at the same time........

For my Slawson Family I will update on Mom tomorrow. Please do not call Donny. If you need to talk, call me and I will give you info as we get it. Call my cell at 909-223-7132. Mom is doing well but both boys are dealing with Dad and Mom and have no time for anything. Dad hates being out of the house. Stress it high for all of them.

Wheeler/Wells family..Please keep my baby brother in your prayers. He has ALL and is going into the hospital tomorrow for more testing and treatment. Keep him and his family safe as he walks this scary road!

As for Team Slawson.....Sammie and Jacob are doing great. Please keep Sam in your prayers on the 15 for her neuro appt. Really she just needs someone to tell her what she is dealing with is MPS and not some strange cancer or crazy alien living in her arms and back. LOLOL Poor kid has had so much to deal with in her life. But always does it with a love of life and a laugh!

On a fun note. Sammie passed her math exit exam for high school. No MPS can keep her down. Class of 2010.... here we come!!!

I swear I will update tomorrow.

Love and Hugs,
Tami

Friday, December 5, 2008 4:18 PM CST

Hi Everyone,

We received this email today.

Please copy and forward this email on. There are many MPS families who will benefit greatly from this gift.

Families help families:

December 5, 2008

Dear MPS Families, Adults, Relatives, Friends and Professionals:

We’ve heard from many of you how this economic crisis is affecting your family. We’ve also heard from others who want to help our families in need. Because of this acute need, we have established Families Helping Families, an outreach program to provide help during the holiday season. We are asking you to support our families in need by purchasing and sending a $25 gift card. After we receive your e-mail reply, we will match a family in need with a family offering to purchase and send a gift card.

This program will run on a “first come first serve” basis. The families who request a gift card will be matched with a donor in the order their request was received. Once the Society receives replies, we will send the matches.

We know MPS families struggle with daily life, and we appreciate your support to help another MPS family in need over the holiday season.

Please join us in making Families Helping Families a success.

Barbara Wedehase, MSW, CGC
Executive Director
National MPS Society

Hit Reply, fill in the information below, and hit Send.

If you are the parent of a child with MPS or related disease or an affected adult in need please reply to this e-mail.

______ Yes, I (my family) would appreciate receiving a gift card.

______Yes, please share my contact information with another family.

______Please keep my contact information confidential.

Name:

Address:

City State Zip

Child’s name_______________________Diagnosis__________

Phone____________________Email_____________

If you are able to help a family, please reply to this e-mail. We are asking that you help by sending either a Target or WalMart $25 gift card or a Visa or MasterCard $25 cash card. By replying to this message you agree that you will mail a gift or cash card to the family assigned to you by the Society. If a family chooses to remain confidential, the Society’s office will coordinate sending the gift card. You may also remain anonymous.

______ Yes, I would like to help a family by donating a gift card

_______Number of gift cards I will donate. (We will provide you the family information for each gift card you donate.)

Name:_________________________________________________________________

Address:_______________________________________________________________

City, State, Zip__________________________________________________________

Phone____________________Email__________________

Reply to email at info@mpssociety.org

In the subject line type Families helping families

Friday, October 17, 2008 8:30 AM CDT

Hi Guys,

Tomorrow is the Big Day. Our 8th annual National MPS Society Walk and Run LA! Please come out and enjoy this wonderful event. Link to the run is www.mpsrun.com We also were in the newspaper. That link is
http://www.dailybulletin.com/search/ci_10740976?IADID=Search-www.dailybulletin.com-www.dailybulletin.com

Wish us luck as we work to find treatments for all our MPS and ML babies.

Love and Hugs,
Tami

Friday, September 26, 2008 4:59 PM CDT

OMG It has been so long since I updated the caringbridge site. Bad Tami!!!!

Well, Everything is going good with Sam. Her feet are wonderful and no new tumor growth in her left and her right is still stable. Thank you Dr. B at CSMC and Dr Fred at St. Judes!!!

As for her neck. She is fine. Just a typical MPS child and unless she starts showing more symptoms of cord compression we are not going to worry about it! Jacob is doing good. I am doing his ERT right now.

So really for the first time in almost 21 years I have gotten good news from a doctor. Holy Buckets. I am going to enjoy this for as long as it lasts. Which means in the MPS World as soon as I post this, the phone will ring with bad news. God Pray not!!!

My lack of updates are just because I have been working very hard on the 8th Annual MPS Society's LA Run. Please come out and support this wonderful cause. My children are very lucky to have a treatment. But sadly so many children with MPS, ML and related disorders and still waiting for that same hope. You can visit the website at www.mpsrun.com !!!!

Love and Big Hugs,
Tami

Friday, August 29, 2008 3:02 PM CDT

Hi Guys,

I have GREAT NEWS!!! Sam's MRI on her feet came back great. NO Tumors in her left foot and the right foot is the same as November. Doing the Happy Dance!!!!

That means No Surgery on her right foot for now and the RFA at St Judes did work for her right foot! It stop the tumors from growing!! We will again check them in 6 months. But for now we are doing a happy dance!!!!!!!!!

So for today, I will leave you all with happy news. I will update on her neck after the next group of MRI's. We hope to have them done in the next week or two.

Have a Happy and Safe, Labor Day Weekend!

Love and Big Hugs,
Tami

Wednesday, August 27, 2008 5:53 PM CDT

Hi Guys,

This has got to be short because it was the MRI day from HELL.

Poor Sam was so worried about the neck part of the MRI she upset her tummy and tossed her cookies for 5 hours. The MRI outpatient center was all messed up and did not schedule an RN for her contrast or schedule enough time for her feet. So we spend from 8am to 12:30 doing MRI's and during the time, they changed their mind about what to do a million times. I have not been pissed in a long time. But I was calmly MAD as ALL HELL. And with poor Sam sick... It was not a good day.

I will update on camping and other fun stuff tomorrow~

Love and Hugs,
Tami

Wednesday, July 30, 2008 12:48 AM CDT

Hi Everyone!

1st we are all fine. The earthquake shook the house but did not break anything. Mom and Dad are fine too! I checked on them after the quake and they were in the backyard watering and enjoying the sun!

I have a few pray requests. Please pray for the White family who lost their beautiful daughter to this yucky disease. Also please pray that Spencer Gates gets better soon. He developed pneumonia after an yucky surgery to straiten his legs. Please pray he heals and is home very soon!

As for me I am just working on the walk/run and family meeting. Make sure you check out the new website at www.mpsrun.com I will be updating more very soon!

Love and Hugs,
Tami

Friday, July 18, 2008 12:47 AM CDT

Hi Everyone!

Where do I start? The kids are doing great! We picked up Jenny from the airport and took her camping with us.

This was our first camping trip with the new camper and I loved it. Bathroom, fridge, walking room, private sleeping area, Wow! What a great time. I did Sammie's ERT in the car on the way up. This was a first time for me and it went perfect. I also did her treatment in the camper the night before we left and she and Jenny had a movie/nap afternoon. We had such a great time with Jenny and I hear rumor that I may get to kidnap her again for the Walk/Run! I can't wait, her and Sam have such a wonderful time together!!

I also had a MPS family pool party with Gabbi and Jessica. Jessica's grandson is sooooooooooo cute! It was so much fun to get together with such wonderful women and watch the all the kids playing and having fun.

Speaking of Jessica Wellman... She has redone the LA Run's Website! It looks so great! Check it out at www.mpsrun.com. Thank you Jess and Re-bubba for all your hard work. I love the new site! If you need a website built check them out at http://www.angeltrumpetdesigns.com

Well, I have been busy working on the run. This is going to be a great year. The Family meeting is all planned! All the info is on the website. I hope to see ya all at the event!!

Love and Hugs,
Tami

Tuesday, June 17, 2008 6:43 PM CDT

Hi Guys,

I know.... No updates in forever! I have been working my butt off (OK well I wish all my work would remove my butt LOL) for the Walk/Run and Family Meeting, and we are getting ready for CAMPING. Who knew 22 years ago when I married Donny that I would be looking forward to Camping?? I think my words were "I will never go camping... So do not even ask me!!!" LOL Now I can not wait to get away from the cell phone and computer. LOL

Sam is very excited that Jenny is flying down for the trip. Poor Donny is going to have 3 girls laughing and making noise. He is the only male on this trip. Jacob is not going. YUP! Mommy is leaving him home so he can do summer classes. Can someone say stressed out Mom? OMG The things that flash through my mind are scary..... and none of them are the normal parents worries. I will not even take you to my dark thoughts when thinking about this. (input very scared mom face)

On a very very happy note... Jake did pass his state test for EMT!!!! Doing the Happy Dance!!!!!!!

Well, I gota run. Will update when we get back! Oh also I am going to try to do Sammie's treatment on the trip up and back. This will be a first for me (in the car) but I want her and Jenny to have tons of time together! Wish me Luck!!!

Love and Hugs,
Tami

Wednesday, June 4, 2008 1:20 PM CDT

Good Morning Everyone,

I have been working hard on the family meeting this week. And I am so very happy that I have booked Ms. Diana Jordan to lighten up the meeting with humor. Don and I have wanted a speaker to make our families laugh for this meeting for a long time. But finding the right person has been not easy. So I am so excited about this years meeting!!!!!!

On Sunday night, the Slawson gang attended Cedars-Sinai's sports spectular. We had fun and the kids looked so cute all dressed up. I will have to update the pictures soon. We met tons of sports stars. Do ask me who because I am not into sports. LOL I do know Snoop Dog was there and all I kept thinking about was the movie "50 First Dates"... "Snoop is off drugs....Snoop's back on drugs" LOL I know I am a sick puppy!!! LOLOL

Jacob passed his EMT class and is working on taking the state test. I am so very very proud of him!!!!!!

Sammie had to get shots on Monday and has been under the weather ever since. I think she is feeling better today. But her arm still hurts. Poor baby!

Well I have to get back to work. I have a run to plan!

Love and Hugs,
Tami

Tuesday, June 3, 2008 7:01 PM CDT

I have so much to update but have been so busy. Will do a real update tomorrow. Please keep our MPS/ML babies in your prayers. So many families are suffering. I hate this disease!

I have some very cool Slawson updates! Check back tomorrow!

Love and Hugs,
Tami

Tuesday, May 13, 2008 5:18 PM CDT

Jennifer wrote this in an email. I thought it was perfect................................

May 15th, 2008
National MPS Awareness Day!

Allison Restemayer is a seven year old little girl in first grade this year at Robert Miller Elementary. Allison was diagnosed with a rare genetic disorder, Mucopolysaccharidosis or MPS type 1, just before her second birthday.

MPS disorders are genetic disorders that limit the body's ability to produce certain enzymes needed for metabolizing complex sugar molecules. These diseases are progressive and cause cellular damage which severely diminishes quality of life and dramatically shortens the lifespan of those affected.

Please join us in celebrating National MPS Awareness Day. Please wear purple and/or your purple ribbon proudly in honor of the COURAGE children with MPS disorders, like Allison, show.

There is an Awareness Day slideshow that a good friend of ours made to help people understand more about MPS disorders. She has posted the video on her You Tube account. Please help us make the Awareness 2008 video one of the featured videos on You Tube this week by taking the time to watch it! Here is the link:
http://www.youtube.com/watch?v=W7VKAhIWpPM
You just may see a picture or two of Miss Allison in the Awareness video!

ND residents will be proud to hear that both of our ND
U.S. Senators, Senator Dorgan and Senator Conrad, have agreed to co-sponsor a resolution to have
May 15th,2008 Declared National MPS Awareness Day by our United States Congress! We are even Raising awareness in our federal government!

Allison has another reason to celebrate this week! The treatment we chose for Allison is an Enzyme Replacement Therapy ( ERT ). Allison receives a four hour IV infusion once a week of (basically) a synthetic version of the Enzyme she is missing. Enzyme Replacement Therapy is helping to dramatically slow the progression of her disease. There is NO CURE for any of the MPS disorders, but Allison has hope for a brighter future because of her ERT infusions. Sunday May 11, Mothers Day, Allison had her 260th infusion! 260 consecutive weeks is 5 full years! Happy Fifth Anniversary Miss Allison! In honor of Allison's Anniversary, she asked me to make a little slideshow of HER :)
http://www.youtube.com/watch?v=hivLd31_DYQ
Allison picked the song herself, and if you are fortunate enough to know Allison, you also know that this song fits my little diva to a "t" !

For more information on MPS disorders, Please visit:
www.mpssociety.org

To visit Allison's website, go to:
www.caringbridge.org/nd/allison
Please sign the guestbook and let Allison know that you took the time to visit, she loves to get new messages!

One last request: Please forward this email on... to everyone and anyone. There are more children out there with a similar diagnosis, and unfortunately there are more to come. One of our family's challenges has been having to explain over and over again what MPS is and what it does. If we can make people aware of rare disorders like MPS, it will make a difference.

Saturday, May 10, 2008 9:07 PM CDT

Clay balls
A man was exploring caves by the seashore. In one of the caves he found a canvas bag with a bunch of hardened clay balls. It was like someone had rolled clay balls and left them out in the sun to bake.

They didn't look like much, but they intrigued the man, so he took the bag out of the cave with him. As he strolled along the beach, he would throw the clay balls one at a time out into the ocean as far as he could.

He thought little about it, until he dropped one of the clay balls and it cracked open on a rock. Inside was a beautiful, precious stone!

Excited, the man star ted breaking open the remaining clay balls. Each contained a similar treasure. He found thousands of dollars worth of jewels in the 20 or so clay balls he had left. Then it struck him.

He had been on the beach a long time. He had thrown maybe 50 or 60 of the clay balls with their hidden treasure into the ocean waves.
Instead of thousands of dollars in treasure, he could have taken home tens of thousands, but he had just thrown it away!

It's like that with people. We look at someone, maybe even ourselves, and we see the external clay vessel. It doesn't look like much from the outside. It isn't always beautiful or sparkling, so we discount it.

We see that person as less important than someone more beautiful or stylish or well known or wealthy. But we have not taken the time to find the treasure hidden inside that person.

There is a treasure in each one of us. If we take the time to get to know that person, and if we ask God to show us that person the way He
sees them, then the clay begins to peel away and the brilliant gem begins to shine forth.

May we not come to the end of our lives and find out that we have thrown away a fortune in friendships because the gems were hidden in bits of clay.

I am so blessed by the gems of friendship I have with each of you. Thank you for looking beyond my clay vessel.

Happy Mother's Day!

Love and Hugs,
Tami

Wednesday, April 30, 2008 4:18 PM CDT

Good Morning Everyone,

Wow, I have so much to talk about. I will back up a little and then update about Sam's and my adventure yesterday.

First, Jacob worked very hard and passed his GED test. We are so very very proud of him. He also started EMT classes last Friday. Doing the happy dance!!!!. Jacob also has been working very hard on losing weight and getting back into shape.

His truck was broken and it cost a small fortune to fix but he is back on the road again. This has made Sammie very happy because she needed the car too. OMG my kids have to share a car. Whoever knew this was going to be an issue in my life? Thank you so much aldurazyme!!!

Now for our Girl adventure. OMG OMG OMG....

We were invited to be a speaker for CSMC Genetics program. The event was held at the Beverly Hills Hotel! They were nice enough to let Sam and I stay at the hotel the night before. Yup we were spoiled at the Beverly Hill Hotel. OMG the stars we saw. Sorry I cannot list them here, but some I even spoke to before realizing who I was talking to. And some I am still trying to figure out their names. LOLOLOLOLOLOL

The event was a fashion show by Fendi. We found out that this was the first time Fendi has ever done a fashion show on the west coast. And I think we were the first to see his fall line. The raffle prizes included a 25,000 necklace and a 3 thousand dollar purse! Now that's raffle! LOL The women there were very very very nice. But also wealthy! You need to understand, everyone there will be spending at least 750 dollars a plate to attend this event. Yup! My speech better be good! OMG! No Stress here!

Now I really didn't get much info on what I was going to be doing other than giving a speech about my children, MPS, and how wonderful CSMC has been to us. I figured that I was going to be one of many speakers.

OMG NO! I was the only SPEAKER! The whole event was about MPS and My Story! HOLY BUCKETS!!! Once I realized this.... My nerves went into over load. Let me put it this way. I was 100 times more nervous than I have EVER been in my life..... And I have had a lot to be nervous about in this lifetime of mine. But this hit off the charts for me!

So I was introduced and managed somehow to get through the speech. What did I say? Don’t ask.. I do not remember. But I did say MPS tons of times.

I have to laugh at myself. During my speech my mouth went dry. They did not have any water up there. So I asked a very nice woman at the front table to give me her water, and she did. Later she thanked me for telling our story and I told her NO! THANK GOD FOR YOU AND YOUR WATER! lolololol

Then the doctor came up and shook my hand and told me not to leave. I kept thinking why am I still standing her? I went to move off stage and again the doctor whispered No! Stay here! I really was not paying attention to what was being said because I still could not figure out why I was still up there???

Well, a wonderful woman who is the director of Lladro in Beverly Hills presented me with a piece called "Life" that is dated 2003. It is 20 inches tall and is of mother and child. OMG I was speechless!.... Life and 2003!!! It is so beautiful!!!

Now anyone who really knows me knows I am a "bull in a china shop!" They handed it to me and I just kept saying.... PLEASE I am going to drop and break this. Camera's were flashing everywhere to the point I could not see and I was so convinced that I would drop this beautiful statue. The wonderful woman finally said "Don't worry... it is insured!" I thought, OH Great! Now I really am a going to break it! LOLOLOL

I was so humbled by the experience and blessed that I could talk to a group of wonderful people who were interested in learning about MPS and who are willing to give of their time, energy, and hard earned money to help children with MPS and all genetic disorders.

The fashion show was fantastic! At one point I leaned over to Sam and asked if the number behind the outfits were the scan code numbers or the price? LOLOLOL Yes, I did know they were the prices, but I knew she would get a kick out of that! LOLOL

So everyone at the event learned about MPS and how so many children are still waiting for treatment. I have done my part for the cause for the rest of the year. Oh wait….. I still have a run to do! OMG! I need a vacation!!!!! LOLOLOL

Love and Big Hugs,
Tami

Friday, April 25, 2008 7:06 PM CDT

Hi Guys,

There is so much good things going on with the kids. But I must wait to update them until next Wednesday. I have too much going on right now. So I going to leave you with my latest project. I hope you like it!

Note: Sad song and not for new parents!

Love and Hugs,
Tami

Friday, April 25, 2008 7:02 PM CDT

Friday, March 28, 2008 6:50 PM CDT

Hi Guys,

I hope everyone is doing well!

I will start with the fun things in our life. Sammie is now in the world of teenage drivers! OMG. Yup she passed her driver's test on Monday! I was so scared for her. I watched the instructor who gave her the test, fail the two people before her. But she passed with flying colors. Doing the happy dance!

So with her new found freedom, she decided that she was going to drive down to her friend Cody's house. Now Sammie really does not have a great sense of direction. Left and rights are getting better, but N S E W forget it! So I set up the GPS for her. You have to understand that Cody only lives about 6 miles from our house, but I know she will need the GPS.

Off my baby goes into the land of grownup, and the land of evil LA drivers! After getting lost 3 times she finally arrives at Cody's house. She calls me and updates me on all her driving adventures and tells me she is on the way home. Now remember when I said “ONLY 6 miles” from the house? At the most it should take her 10-13 minutes to get home. Well at the 15 minute mark I am getting worried, at the 20 minute mark and I am out of my mind with worry! Was she wearing her medical ID bracelet? Will EMT see it? And a thousand other evil thoughts that I do not want to ever think about again!

Then, the phone rings…… On the other end is a sobbing Samantha, proclaiming she is lost!!!! Thank YOU GOD! She is only lost. So I calmly ask where she is parked. She informs me that she is driving. OMG NO! I calmly tell her to hang up the phone, safely pull over the car, and call me back. When she does, she is still crying. I calmly ask her "Where are you?" she responds with I don't know (remember GPS in the car?) “But I think I am by Boot Barn.” Bingo! So I ask her which direction she is going (Again GPS). She cries "I don't know" and I calmly without even thinking (which my husband thought was the funniest thing ever) asked "Is the Sun in your face or at your back?" To which she responded with” BACK!” Bingo! My baby is no longer lost! I give her directions home and all is right with the world!!!

We all remember our first day of driving, but I can say Sammie will never forget hers!!!! Nor will her Mommy!!!!!! LOLOLOLOLOL

Well I have to get going I must update the rest on Monday. Please keep Noah Scott and the whole Scott family in your prayers. Also Carmen who just had a beautiful baby girl and is waiting for the test results to see if she has both MPS1 and/or MPS3. Her Son has both. Please pray for her!

Love and Hugs,
Tami

Monday, March 17, 2008 6:44 PM CDT

Hi Everyone,

I know! Bad Tami!!

I really have not been in the mood to update and every time I try the phone rings.

First the kids are doing well. Their doctor appt went well. It is so funny. I was talking to Barb from the MPS
Society while their doctor Rena was visiting and taking updates from them. I have become so comfortable with her over the years I just kept talking in the hall while she and the kids did their medical exam. She is the only doctor that I would let this happen with. We are blessed to have her.

Jacob needs Cardo, sleep study, ENT, ortho, eye, ect. But is doing good. Sam needs only cardio, hearing test. Rena was also very happy with her weight loss. She has been working very hard and looks great!

We did attend the Holland memorial. It was perfect!!!!!! No other words are needed~ Just Perfect!!!!

The Holland’s are the sweetest people I know. They also took Southern hospitaly to a whole new level. OMG they had us to their house on Friday night for dinner and after the memorial (which the also fed everyone) we all when to dinner at a wonderful Mexican Restaurant…I was so tired (Hush!! No old jokes here!!) I have no idea how the Holland’s were able to keep going and be so wonderful to all of us. When I grow up I want to be just like Amy and Steve!

As for upcoming events, Sam is going to take her DMV test next Monday. So keep both her and me in your prayers. LOLOL

Please keep the Holland's and all our Angel Babies families in your prayers.

Love and Hugs,
Tami

Thursday, February 21, 2008 5:18 PM CST

Hi Everyone!

Life has been busy and I have not been in the mood to update. I think about updating everyday but something always comes up.

So here is the Reader Digest version of what is going on....

For Donny's Birthday I bought him a new camper. As many of you know he loves to go camping and we have had a pop-up trailer for many years. Well with the kids and their treatments we needed something more updated..... You know something with lights... LOL Yes our old pop-up had no electricity or bathroom or let’s just say.... NOTHING but beds... LOLOLOL

So we are planning our first trip in June and we are bringing Jenny Klein with us. This is to make it up to both kids for Sam's Birthday party from hell. We felt so bad for both kids. Jenny, for spending the whole time watching Sam vomit, and Sam for vomiting.

As for the kids.... Sam has started back to high school for two classes. She is still doing home hospital school for the rest of the classes. She is having fun and both of her teachers at the high school are wonderful...

Jacob is doing well. Working hard at college and hanging out with his friends and our Jessica. Can you tell I like her a little. :)

We are attending the Holland Memorial next weekend. And the kids have a genetics appt on Wednesday.

Please keep all our MPS and ML families in your prayers. There have been way too many angel babies lately!

Love and Hugs,
Tami

Wednesday, February 13, 2008 9:54 PM CST

Just something to share with you all.............

Wednesday, February 13, 2008 8:05 PM CST

Thursday, January 31, 2008 3:55 PM CST

Hi Guys,

Well, the Slawson family is doing well. I am sorry about the very slow update. I just have not felt up to updating and really nothing major has been going on with us.

Sammie is starting high school on Monday. We are starting with 2 classes and then will up her with more classes once we think she is ready. If you remember we are waiting until June before rechecking the MRI and decide if we are doing surgery on the right foot or if it didn't kill the tumors in her left foot, we will start a new chemo. We are happy to take a break from cancer for awhile!!!

On a very very very sad note. Spencer Holland passed away last Fri/Sat night during his sleep. Many of you know how much the Holland family has impacted our lives. Spencer was the first child I had seen with MPS and thanks to his cute picture at age 7, I was able to show Donny what MPS was.

Spencer was one of the first 10 children in the whole world who were brave enough to try a new treatment for MPS1. He and his wonderful parents are the reason my children are doing so well. I remember looking up MPS1 and seeing nothing but death between age 6-18 and nothing but a very sad life of sickness and death. MPS1 children always died!
There was really no hope.

Then...... I found info about a clinical trial for MPS1 and a website with a very cute picture of a little boy. As my jaw dropped, Sammie walked in and wanted to know why a picture of Jacob was on the computer? That picture was of Spencer Holland. And with that cute picture of Spencer, I then showed it to Donny. He took one look at Spencer and asked "So what do our kids have?" From that point on the Holland family has been a very special part of our lives. Over the years we have been blessed with the friendship of the Holland family.

We have again and again watched them in awe, as they follow their heart to do everything to overcome this yucky disorder. They have given their children and all children with MPS the best life possible.

Spencer will always hold a very special place in our hearts. Everyone who was lucky to meet him was blessed.

Please keep the Holland family in your thoughts and prayers as they learn to live without Spencer while they continue on the MPS road with two beautiful girls who also have MPS1.

Love and Hugs,
Tami

Thursday, January 24, 2008 9:56 PM CST

I have been busy. I will do a reall update tomorrow am. But I wanted to again post my very special stories for our special children. Life with MPS is not easy and sadly so many new families diagnosed with this and other disorders I figured the new families shoud read them too.

Love and Hugs,
Tami
............................

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

........................

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."
.........

For you my Sisters.
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.

You're my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart
surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changes. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we
could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology and psychiatry.

We have taken on our insurance companies and school boards to get what our
children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove the insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if it means walking
away from it. We have tolerated scorn in supermarkets during "tantrums" and
gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and re read them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front door on Halloween, and we have
found ways to help our deaf children form words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd
make it through another day, and gone to bed every evening not sure how we
did it.

We've mourned the fact that we never got to relax and sip red wine in Italy.
We've mourned the fact that our trip to Holland has required much more
baggage than we ever imagined when we first visited the travel agent. And
we've mourned because we left the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in like knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands and together, we special mothers and our special children, reach for the stars

..............

Some Mothers Get Babies With Something More
written by: Lori Borgman
Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants.
She smiles demurely, shakes her head and gives the answer mothers have given
throughout the pages of time. She says it doesn't matter whether it's a boy
or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a
perfectly healthy baby with a round head, rosebud lips, button nose,
beautiful eyes and satin skin. Every mother wants a baby so gorgeous that
people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first
steps right on schedule (according to the baby development chart on page 57,
column two). Every mother wants a baby that can see, hear, run, jump and
fire neurons by the billions. She wants a kid that can smack the ball out of
the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that
didn't fuse, a missing chromosome or a palette that didn't close. Most of
those mothers can remember the time, the place, the shoes they were wearing
and the color of the walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It felt like recess in the
fourth grade when you didn't see the kick ball coming and it knocked the
wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even
years later, take him in for a routine visit, or schedule her for a well
check, and crash head first into a brick wall as they bear the brunt of
devastating news. It can't be possible! That doesn't run in our family. Can
this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely
sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes
appear as specimens without flaw - rippling muscles with nary an ounce of
flab or fat, virtual powerhouses of strength with lungs and limbs working in
perfect harmony. Then the athlete walks over to a tote bag, rustles through
the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third
knee surgery, or on a trip home from an echo cardiogram, there's no such
thing as a perfect body. Every body will bear something at some time or
another. Maybe the affliction will be apparent to curious eyes, or maybe it
will be unseen, quietly treated with trips to the doctor, medication or
surgery. The health problems our children have experienced have been minimal
and manageable, so I watch with keen interest and great admiration the
mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out
of a wheelchair 20 times a day. How you monitor tests, track medications,
regulate diet and serve as the gatekeeper to a hundred specialists yammering
in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned
souls explaining how God is at work when you've occasionally questioned if
God is on strike. I even wonder how you endure schmaltzy pieces like this
one -- saluting you, painting you as hero and saint, when you know you're
ordinary. You snap, you bark, you bite. You didn't volunteer for this, you
didn't jump up and down in the motherhood line yelling, "Choose me, God.
Choose me! I've got what it takes." You're a woman who doesn't have time to
step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the
strength of a draft horse while holding onto the delicacy of a daffodil. You
have a heart that melts like chocolate in a glove box in July, carefully
counter-balanced against the stubbornness of an Ozark mule. You can be warm
and tender one minute, and when circumstances require, intense and
aggressive the next. You are the mother, advocate and protector of a child
with a disability. You're a neighbor, a friend, a stranger I pass at the
mall. You're the woman I sit next to at church, my cousin and my
sister-in-law. You're a woman who wanted ten fingers and ten toes, and got
something more. You're a wonder.

God Bless you all!

Wednesday, January 9, 2008 5:02 PM CST

Hi Guys,

OK, I do have a lot to update but my computer is dying. I spent all day trying to save the walk/run info and all our pictures. OMG my whole life is in this computer. Well at least my life since 2003. So I just wanted to let you know that we are fine. As soon as I get the computer working or God Help me I have to buy a new one, I will update.

I hope everyone is having a wonderful new year!!!

Love and Hugs,
Tami

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