It's kinda difficult to explain and I'm sure Dr. Woods thought I was crazy. First of all, Asa only goes to school 2 hours a day. He hasn't started therapy yet so he isn't having to do a ton of work although his teachers do put him in the gait trainer or the mobile stander. And get this, he tolerates the rolling stander better than the gait trainer. He'd rather be standing with his feet and legs all strapped in and pushing with his arms to roll around than in a gait trainer with a seat and walking around. Anyway, it's basically just playtime and he is DONE after a hour and a half or more!
Secondly, this started before school. 2 weeks before school. He started sleeping til 10:30 or 11 every morning after going to bed at 8:30 or 9. And then he didn't want to play during the day, he was happy to be held or to just sit on the couch with a book or in the highchair just hanging out. Since school started he's gotten up at 10:30. Eat breakfast, get ready for school, I drive him to school at 12, pick him up at 2, pick Anna up and we're home by 3. He them lays on the couch resting till Cade and Gracie come in at 3:45. Still he really just hangs out on the couch. Yesterday he laid there playing with his feet till 5 or later.
I guess it doesn't sound dramatic, and it's not, but it's definitely not his normal. His ptosis is also very noticeable in the afternoon and he has dark circles under his eyes. He is clingy and really just wants to lay around holding your ear! His motility has slowed too. He is having several gagging and nauseated spells a day. He seems be have gotten better at fighting it off though and we haven't drained as much as we were before but he is pretty miserable when it hits.
So I thought this was just a new normal for him but then I realized we'd messed with his diet this summer, he could be anemic. Or his ammonia could be high. Or he could be sick somehow. And then my mind wonders to the BIG stuff it could be! Thankfully it doesn't look like it's anything big! But it's also not anything small and fixable! Dr. Woods ran all kinds of labs and everything looks fine. Not perfect but only off a tiny bit. So I'm back to just be crazy and worried! I guess it's just a looong down time for him.
Asa did really well at the appt. He only cried when appropriate, he gagged at the throat swap but didn't puke, he gave the Dr. a high five and we were there for 2 1/2 hours! He did ALOT of sink playing and I have a cute video but I haven't loaded it yet....sorry! After the blood draw (which only took 1 stick, thank heavens!!!) I was gonna distract him with cartoons on YouTube but he doesn't really care for cartoons so I thought of a mito friend's blog. She recently posted a video that I hadn't watched so we turned to her kiddos. Asa stopped crying immediately and after only a few seconds of watching Emma laughing, dancing and talking, Asa started signing "love" over and over! How precious is that!!! We had to watch it 3 times. He also liked watching his own videos! Lol!!!