Scott and I took Sam down to NC this past Monday for his second stem cell infusion at Duke. We are actually in the out patient suite now where Sam just received his second batch of stem cells. The entire experience seems less surreal than it did the first time we came down. Maybe because we've done it already or maybe because we are not as hopeful as we once were. A year and a half ago the possibilities for Sam's future development seemed so bright. He was not even 2 years old and we were still expecting that Sam would eat, walk, talk... Obviously we still hope that Sam can one day achieve all of the things that we probably take for granted, but as time moves along the inevitable continues to haunt us every single day.
We are hopeful that Sam will progress. He definitely has made some significant gains, but he still has such a long way to go. We pray that these cells will continue to give him what he needs to make his body work better.
In the meantime he got his smile back! At this point I really cannot ask for more!
Sam has not been himself for over a month now. He has been teething. He's been sick. He seems just overall weaker and disconnected. I can count on one hand the number of times he's smiled in the past month. Sam has also been whimpering a ton and just has this general "I give up" look on his face. We have taken him to every doctor. He has been poked prodded, bloods have been drawn twice... I want my baby back.
Next week we go to Duke for the rest of his stem cell infusion. I should be more excited but its hard for me to feel hopeful and excitement when all I feel is fear and anxiety.
My name is Carrie. I am a speech-language pathologist that specializes in feeding/swallowing disorders and autism. I have had a major life change when I had my son Sam. Sam will be 3
July 31st. Sam was born with the inability to swallow due to leisons in his brainstem. Sam has many other compromises such as hypotonia and a left facial paralysis. Every day is a battle. But hopefully our story can comfort and help others.