Re: Need encouragement and hope
I think the PT said feeding tubes v. walking to explain the wide range of possibilities rather than to scare us.
My son can eat almost normally right now with a bottle. He does spit up formula occasionally. OT says he probably doesn't have full control of the smooth muscles in his throat/esophagus right now. Before that diagnosis I thought he was feeding just fine. Weight gain up to now has been great. He is 50th % for height/weight.
We are in a state with an Early Intervention program. Waiting for the application process right now. They will eventually provide free in home PT and OT. Until then he gets his therapy through our private insurance and we spend most of the day doing his exercises with him while he is awake.
We basically have cycles of sleep/therapy/feeding with him now. We are starting to feel bad for our 2 year old daughter but family has been coming over when possible to give her love and attention as well.
Funny you mention research and worst case scenarios. I was banned from researching online anymore by family. The stuff I found tended to be more worst case scenario. The videos on Spastic Quadraplegia were especially upsetting for my wife. She told me to find something more hopeful which is how I ended up here.
I know walking is "possible" so I added that to my searches and got somewhat better results.
I think the not knowing is what is killing us right now. He has almost no interest in toys b/c he can't really control his arms. We put toys in his hands and manipulate his arms/hands to touch his face/toes like a normal baby would at this point. Does this improve as he gets older? Does this improve if he starts getting botox/bacuflen?
Last edited by Administrator; 05-24-2012 at 05:18 PM.