Monday, June 30, 2008

I suppose my noticing Jonah's mild twitching in his right foot/leg was no coincidence as I mentioned this to his physical therapist this morning. She said she was just starting to notice it too and yes, it was a neurological sign stemming from Jonah's bleed. I asked if it definitively meant CP (Cerebral Palsy) she said it was a possibility. I guess it is good that this therapist is constantly trying to get us to be positive about the situation and is hesitant to talk about CP yet but sometimes I just wish I could get the brutal truth.

It isn't much of a surprise as we've known that although Jonah had the bilateral bleed, the greater amount of scarring occurred in the right side of the brain which would affect his left side and the NICU neurology did mentioned side effects most likely would be gross motor.

Still, I was disheartened this morning. I've practiced a million times my reaction, preparing myself to hear the mention of CP for the first time by a therapist or doctor. I practice and live by, "Hope for the best, prepare for the worst," even if it is cynical at least I am emotionally ready but still, I couldn't help but feel a twinge of sadness.

So for now we are trying to help him in more often using his left side, hand, etc. He has a tendency to completely favor his right side and clenches his left fist often. He has been gagging himself when sucking on his right hand lately so I started putting a sock on it and I got to thinking, "this is a great way to get him to start using that left hand more." I must have been thinking right as the therapist called it "forced use" and said it was a good idea to continue doing this on a regular basis to get Jonah to really use that left hand.

Maybe, just maybe, we'll be spared severe CP. I keep hoping Jonah will be functional to some degree. The therapist said back when we started in May that she didn't believe at that time Jonah was displaying severe signs of CP, but she didn't rule it out or the possibility of mild/moderate CP.

Honestly, sometimes I feel like I am joking myself to not expect some type of disability considering the severity of his bleed. I know I should be grateful that he has come as far as he has and done as much as he has been doing. I am, I am grateful but still disappointed.

My therapist really did try and be positive and I have to be thankful for that. She applauded me for being all about early intervention, for getting Jonah in to therapy and for noticing things like the minor spasms. She said most parents would never observe this until it became a problem and if we continue to work hard with him we just may be able to change his outcome.

There is always hope.........

1 comment:

wilkinson_fam said...

Oh sweetie -

My heart continues to break for you. The waiting and "unknown" is the hardest part.

But you are stronger than this situation. You will conquer this and be the kind of mom Jonah and Noah need no matter what they are asked to go through in this life.

You are not alone.