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.