Here is a long overdue Asher update:
Short story: Asher's feeling GREAT!
Long story: grab a cup of your favorite beverage and settle down for a long read...
Asher latest wild ride has
FINALLY come to an end. Truthfully, he has been struggling since the last scope. Some days he felt good, followed by days where he could barely get out of bed. Then, the truly bad days set in: where Asher's arms and legs couldn't follow the instructions given to them by his head. The pediatrician described it as a muscular dystrophy type of thing, where Asher's muscles didn't work the way they should. I describe it as horrifying to see my sweet baby struggle to move his legs or keep his eyes open. It was truly frightening.
In addition to the muscle problem, Asher suffered from a severe lack of energy. Getting him out of bed in the morning was quite the ordeal. I'd try to wake him up, then after 20 minutes, I'd pick him up out of bed, like a sack of potatoes, and jiggle him. He'd cry. I'd put his little body on the floor and he'd lay nearly lifeless right where I put him. I pondered dunking him in the cold shower, and would start to tickle and tickle and tickle him. He'd cry some more. In short, it took A LOT of effort and a whole lot of crying on his part to get him out of bed, only to see him with ZERO energy for the entire day. He'd have a three hour nap at school. At the end of the day, Asher would ASK to go to bed early. The minute his head hit the pillow, he would be sound asleep. Then, 12 hours later, I'd struggle to wake up the exhausted boy yet again.
We're not quite sure what caused the exhaustion or the muscular dystrophy. I don't think they were caused by the same thing. I suspect the muscular dystrophy was caused by too much Flovent. The exhaustion, I suspect, is a food failure.
Once we adjusted the medication, Asher's arms and legs started to work again. His exhaustion, however, remained. This is why I think they're caused by two separate things. Question #2 is to try to identify the cause of the exhaustion. During this time, we tried to trial beef. We bought organic beef from Whole Foods. We made beef stew. We made hamburgers. Is the problem a reaction to the beef? Or...is it a reaction to bacon? Bacon was the one remaining food from the failed last round of food trials. And he's been tired since before the last scope. Is bacon the culprit? Are they both bad? Or is it something else entirely? After removing both things, Asher's energy perked up considerably. Now, Asher gets himself out of bed in the morning - before the alarm even goes off. He doesn't have that excess of energy that he did when he was on a purely elemental diet; he's more medium energy now. Heck, medium energy looks mighty wonderful after such a long bout of zero energy days. And if a purely elemental diet will give us a healthy, energetic Asher, then not eating food suddenly doesn't seem so bad.
Truthfully, Asher has only had the past three days of feeling great. We'll just make absolutely no plans to add any new foods or make any medication changes anytime soon. We just need to savor these good days.
