Sunday, September 20, 2009 beautiful boy!

Thanks to some very wise and thoughtful commenters I have a better idea what might actually be going on with Ahren. That and good ol' Dr. Google. Being a research scientist is almost a curse when you hear something like that. My mind went to the worst case scenarios, lack of successful medical interventions and no cures. 

But....he just doesn't fit the presentation for muscular dystrophy. There is definitely something, but not that. He was diagnosed as having Hypotonia (very low muscle tone) when he came home. That can actually be caused by many, many things. Some are no problem, others are devastating illnesses. The fact that our interventions have improved him so much is a plus. The fact that some issues are re-surfacing or getting worse plus a couple of new things was the big red flag.  

Here is what I am thinking. As Urban Blonde pointed out to me, he has all the symptoms of Ataxic Cerebral Palsy. This is a non-progressive disease caused by some sort of injury to the brain (like very poor pre-natal nutrition....) It is non-progressive but CHANGING. Especially during childhood and periods of significant growth. Have I mentioned he grew over 6 inches this year? That alone is enough to cause a huge regression. His muscles are just a lot slower to catch up. Another symptom is loss of bladder and bowel control, and who do we know who has been wetting his pants a lot and recently also pooped his pants 4 times? you got it, Ahren. The times he has pooped his pants it's like he doesn't even know he did it. The muscles just let go and he has no control. Geez, how bad do I feel for getting so upset at him? Luckily I didn't let it show on the outside most of the time, but still. Remember the day I made him wear the wet pants and he hated it? Yeah, not my most stellar moment. Oh well, I need to focus on moving forward and not dwell on mistakes. Learn from them, yes, but dwell on them? Nope. 

He is a very smart little cookie, and he is very adept at using his charms to get people to do everything for him. He won't feed himself if he can convince someone to feed him (which he does ALL the time) He won't dress himself or even pull his own pants down or up. He won't climb in the van by himself or jump out. His pre-school teacher sent a note home telling me he didn't like to do anything for himself and she was going to work on getting him to do things. (Good luck with that one!) This is a typical compensation mechanism for CP kids. He just happens to be a pro at it. You should see Nanny spooning scrambled eggs into his mouth. He is one happy camper! 

We will still do all the testing but I am not worried anymore. He is just my sweet, beautiful quirky little boy. Now I need to go wipe the slobber off his face and put a band-aid on his skinned knees.....

1 comment:

Reba said...

I will be waiting and praying with you. I am glad you were able to do your own research; I always feel like mommas know best. I really need to learn from you on the not regretting thing...I am queen of it. I do know that he is a beautiful boy inside and out (from what I see on here) and is exactly who God designed him to be. He is blessed to have you and you are to have him. (And I still pray for PBJ too)