Monday, August 27, 2012
Back from Omaha NE...a few weeks ago.
We arrived back home safe & sound after seeing the team at the Metabolic Clinic. A big change we found out, Dr. Rush is going to be the new Geneticist, and he is great!! So the really big news is, Bennett's bone density has gone up 50% in his spine & 200% everywhere else. I could bore you with "Z Scores" but I won't, just know that he's doing AWESOME!!. Dr E said that as soon as Bennett is capable of holding his head up on his own we can talk about scheduling his rodding surgery!! I still get goose bumps when I think about it. Now, back to him holding his head. He IS able to hold his head up he has the neck muscles big time, it's just so heavy (because of his extra large brain) that it's very uncomfortable on his spine when we hold him with his chest on ours or try to hold him like a healthy child. He sits in a Tumble Form chair, the couch or any seat that forms around him fine. If the seat involves having to hold himself up w/ his arms he's just too resistant. He's still scooting like a crazy man, he's talking, talking like crazy. He likes to be driven in his car, that's my 2nd occupation "chauffeur". The new speech therapist started last week. I don't think he really needs one, but we will take all the assistance from experts in different areas that we can. I've updated my phone to have blog when I'm not at my desktop. Hopefully this will encourage me to update more frequently. Take care,