Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
This beast visits us everyday in Jerry's room and we wait with baited breath while it determines the fate of the weight! And the wait...literally. According to this scale yesterday, Jerry has gained one pound in four days. He is now 66 pounds. The doctor says that, at this rate, we could be here a while.
Thanks to friends visiting and playing with him and the Speed channel and MLB, while he really wants to go home, he is coping quite well considering.
The GI doctor said his enzyme test results showed an intolerance for the sugars in both lactose (dairy) and maltose (pastas, cereals, grains), but that neither of these would account for the extreme weight loss that resulted in his hospitalization.
Another possibility is gastroparesis, which is where your stomach muscles stop contracting and so food sits in the stomach too long causing vomiting. They proactively have him on azithromycin, which forces the stomach muscles and intestines to contract and aids in digestion. They started him on that now in hopes that, when he eventually does start eating by mouth again, his stomach will be ready and maybe even contracting on its own. There is a test for gastroparesis, but no plans to do it as of yet.
Anyway, that's where we are as of the end of this weekend. The doctor says that recovery from SMA Syndrome is a slow and long process sometimes and so it's a waiting game and patience is required. Those of you who know me well, know that is a fruit I am lacking in!
I am a Christian. I am a wife. I am a mom. I am an author. In that order.