Wednesday, August 20, 2008

Good news!

I keep getting asked if the stem cells are working, are we seeing improvements, etc... Many of the families who have participated in stem cell infusion report certain degrees of success. Some have reported improvements within 5 days of receiving the stem cells and others have reported improvements in 3-6 months post stem cells. Of course no one can know for sure if it is the stem cells, or is it maturation, or is it all of the theraputic intervention, etc...

So what about Sam... Sam has had a very rough summer. He has not been tolerating his feeds at all and it has been torturous for Sam, Scott and myself. What does not tolerating feeds mean? It means that every time we have had to feed Sam which is every 2 hours 8 times a day (don't ask) he has screamed, retched, choked, turned blue, sweat, passed out, etc... We haven't exactly figured out the problem yet but we are on a very good road to success thanks to Sam's very patient GI and nutritionists (we are working with 3), other parents, our nurses, etc... So we changed Sam's formula and caloric in-take and he is a new child. Now that he is comfortable we can see a BIG difference in Sam's skills and so can everyone else. Every single one of Sam's doctors that we have seen in the past 4 weeks has noted something that they have never seen Sam do before. Sam's therapists and nurses also have noticed big differences and improvements in Sam's development.

For starters we are giving Sam tastes of baby food. Yup my son can swallow little little bits of baby food. Sam went from not being able to swallow his saliva to swallowing small tastes of baby food. We started out by coating the back of a spoon with a lollipop. Sam consistently swallowed after each spoon presentation. After we saw that Sam could swallow more consistently we decided it was time to bring him back to St. Jo's feeding and swallowing clinic. While there we sat in a room (me, Scott, and Sam) while the docotor and the speech-pathologist sat on the other side of a two-sided mirror and watched me feed my son. After watching me for about 5 minutes the doctor walked in with baby food and said it was time. Scott of course started crying. And sure enoough after a few tries Sam started swallowing small theraputic tastes of baby food.

Next thing, which I noticed about 2 weeks post stem cells, was that Sam started using his thumbs. Sam never had the ability to digitize any of his fingers. He moved his entire hand as a single entitiy. Now Sam has much more dexterity in his hands and he is able to manipulate objects in a much more functional way. For example, today Sam put a car shape knob puzzle piece into a puzzle ALL BY HIMSELF!

Sam also feels much stronger. When you pick Sam up you may feel like you are going to pull one of his arms out of its sockets because the ligaments are so loose due to his hypertonicity. Now when you pick Sam up he is much tighter and stronger. Sam is also independently pushing himself up into quadraped. AND today he commando crawled accross a 4 foot mat all by himslef.

All of these events took place within the past 2 weeks. In the past Sam has made small gains here and there. One month he might have made a cognitive gain, another month maybe a gross motor gain, another month maybe a receptive language gain. But never has Sam EVER done this many different things in 2 weeks. So I will leave the speculation up to you, stem cells, therapy, answered prayers, maturation, metaphysical intervention (I'll leave that one to another post)... Who knows. We have come a really long way, unfortunately our obstacles are far from over but we will look at every gain big or small as a miracle.


Anonymous said...

Nice post Carrie. I am excited as well. What a long summer!!! You think you had it rough....I would trade places with you in a second. Try losing 12 - 15 lbs in a month and then within 1/4th time put it all back. Holy s*&t. Looking forward to Labor Day weekend.


Happy Anniversary gorgeous!

Nicole said...

I couldn't have read anything better. I am so happy to hear about Sam's progress. It is amazing that he can swallow small amounts of food. What amazing progress he has made. This is the best news ever. I am sure that even more progress will happen and that this is just the beginning of enormous amounts of improvements to come. Keep up the great work Sam, Carrie and Scott!!!
Love, Nicole S.

Anonymous said...

...Who cares if it's stem cells, therapy, answered prayers, maturation, metaphysical intervention as long as Sam is advancing so wonderfully well. The feeding part as well as the chemistry between you guys made me cry. We're sure the common strength that you all give one another will guide you through the obstacles a head and as the time goes by will bring more successes & gains and happiness. Without your love, energy non of that would have happened!!!!!!
A miracle is to be born into such a family that we all glad to be part of!!!!!!!
Irit & gang
p.s: Happy Anniversary

Anonymous said...

this is such exciting news!!!!
we pray that everyday sam
continues to progress
and that he stays comfortable
with his feedings
i said it before and
i will say it again,
one day sam can!!!
as always
all of you are in
our prayers
and thoughts
by the way both you and scott
look great- scott
you are a leshin- its not your fault- they love to eat that's all
stop worrying about yout weight=
love always
aunt maddy and uncle
lenny and lindsay

Anonymous said...

Wonderful news! Love you!

Anonymous said...

Dear Carrie,

Every time Kelly emails me to read your blog, I know it's going to be extrondinary.

Tears of joy are still flowing.

All that we take for granted are true gift.

You should send your Blog to the President of the United States.

Aunt Shelley

Anonymous said...

Aunt Shelley, since you mention the Pres, please be sure to vote for McCain. He is best positioned to help those who are in need. Socialized medicine will put a major halt on medical research and funding. Not that BO is necessarily going to socialize medicine but he is certainley more on that side than JM. More to come in greater detail as this election of idiots approaches.

joy said...

Hi Carrie,
I am not a writer, I always think of Sam, Scott and you and your writings have made me appreciate everything I have in my life and to look at all different situations more positively.
Well today I have not stopped crying. Watching the therapy video, Sam is so straight, he will be running someday. And now he can swallow a little bit. It is a miracle, because of you and your family’s dedication, hard work, prayers and I believe the help of the stem cells.
Again my thoughts are always with all of you.

Barbara said...

I can feel the love and excitment in your post! I am so happy for you!!

Anonymous said...

not to worry
this leshin family is not voting
for obama

mamamia said...


That is AMAZING progress in 2 weeks! I am so excited for you guys. That is wonderful that Sam is starting to swallow and can now enjoy some real food :) I can't wait to hear more...

Carrie said...

Hi, carrie, my name is carrie too, i found your blog through the hay's blog, Laura and I grew up at the same church, my son Austin was born with a genetic disorder, he is the only one in the world that has it..anyway, Sam reminds me in many ways, how Austin is. It is inspiring for me to read your blog!

Vanessa and John said...

OH carrie, I am crying and SOO happy fro you!! I know how badly you want him to eat and look at that!! :) You'll have to post a video! What a joyous moment! Email me agian you adress so you can access my blog! Love ya!

Anonymous said...

OMG _ !
I think it has to do with alittle of everything - but mostly the loving support of Sam's Mommy and Daddy ! This is the best news that I have heard in a while - and I have a wonderful feeling - that boy is going to be "just fine"
No matter what obsticles cross his path - Cause he has you 2!
Luv Andi-doo

Joe and Leanna said...

Carrie! I'm so excited for you...this is awesome news! And yes, you have me shedding tears of joy for all of you! Keep us updated! I love to hear such wonderful gives us all a little hope.

Anonymous said...

That is the best news I've heard in a long time. I am so happy for all of you. Keep it up Sam.

Love to all- Happy belated Anniversary!

Love- Deb

Anonymous said...

This is amazing news! ALL of your efforts have paid off and Sam is really progressing. I look forward to reading about everything new and exciting that Sam is doing. They are just so magnificent! We are coming to Jersey, Sept. 27th - Oct. 4th. Can't wait to see you guys.

Rosetta said...

That is so exciting! Where did you get the stem cells? We are raising money to take Sierra to get SCT. It is exciting to hear about brain injured children having success with SCT. Most of what I hear is of kids who have SOD or ONH.

Anonymous said...

Carrie, Sounds like some awesome news!!!Yea Sam and happy late birthday little man!!! And boy am I late. Sorry. I hope to read many more great updates of your progress and mommy I love ya and think of you guys often.


Anonymous said...

Hi Carrie,
Beka has kept me up to date on Sam's remarkable/miraculous progress...but she pushed for me to read your blog again...and now I know why! You and Scott are an inspiration...!
And he not a blessing! He has made so many look deeper into the space inside us all...still unknown...the space within where spirit breeds hope and determination.
Would you ever have known how strong you and scott are...or that this precious little boy has a massive will and purpose not limited by doubt or fear.

You are an amazing writer...and you are both amazing parents.

Shmuel Dov ben Gavriella is in my prayers.....
Evey Fabrikant

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