Wednesday, August 29, 2012

2 steps forward 1 step back

<p>Hello, so now that we're home from Omaha things are getting back to normal. We're working w/ Bennett on his sitting up, using words properly, etc.

  So Bennett was taking a nap yesterday & had rolled completely on his stomach, well when he tried to roll back his left arm got stuck behind him & he couldn't get it out & of course broke it. I cannot believe it.

  He cried for a while even after meds & splinting. I really hate this disease & Bennett's the one suffering everyday.

  He's feeling much better now. Hopefully I'll have better news tomorrow.

Tuesday, August 28, 2012

Doesn't it break your heart.

  I've never liked reprimanding Bennett, even when he does something that he's not supposed to.

  Last nite proved the hardest time I've had to date.

We were shopping & he picked out a Lego kit he wanted, I gave in cause I said no to so many other things. It was late & he was getting tired (aka cranky). I made one last stop & was looking at something when he looked up at me & said "daddy?? I want to walk." It took every ounce of willpower not to start crying in the store. I just said to him "I know buddy, me too".

  Then just as quickly something caught his attention & he forgot about it. I didn't & haven't stopped thinking about it since. Then as we were about to checkout he threw his Legos on the ground. So now I have to go into "mean dad" mode & tell him he's not getting them because he threw them, we've been having an issue w/ him throwing.

  I know it's part of parenting, but it sucks especially after your disabled child asks for something they may not get.

I know there's no manual for parents, but sure wish there was.


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,