| So far, so good. He's not really progressing a lot, but at least he's not re-gressing. He still sleeps a lot and not eating sufficiently. We have to thicken his formula and use a syringe sometimes, because he gets so tired. His electrolyte levels are high, probably because of the BP meds. He is still playing and interacting and a smile that lights up our whold day. He is finally sleeping at night, and frequent naps in the day. We're anxious to start therapy and work on some head control soon. He lost all the puffiness from the ACTH and is a good weight now. It's so strange to see a normal size baby in the crib!! Sometimes I lift him and am still surprised at how easy it is now. Some of the meds may be contributing to the low muscle tone, so it's kind of a "darned if you do- darned if you don't" situation. He will be on the sabril until he's 2, but most of the rest he will be eventually weaned off of. After the ACTH clears his system, the BP meds will go first. YAYYAYYY!!!
Thanks to everyone for their prayers and well wishes for Ethan and all of us. It has been scary and emotionally draining, to say the least. I never thought I would have to go through this again- it has been so totally hard sometimes. Times when we really thought he would die- I just didn't know if I could see that again. Genetics still hasn't given us any solid answers yet except that it is not spinal muscular atrophy. Which is good. It really looked and acted like it. They are still working on it, but we are only small fish in a big ocean. We just take one day at a time, sometimes one minute at a time. That's how we get through. Hopefully, someday, we'll know so that my other kids will know whether they can have kids or not. We can't take a chance on this ever happening again.  | 
08-18-2010, 03:14 AM
Similar Threads 
