I haven't been updating about Asa each day. I thought maybe everyone needed a break from hearing about each burp and poop he does each day!!
He had his 6 month PT re-eval on Wednesday. He started meeting a few of the old goals as soon as they came off the printer! Goals like bearing weight without locking his knees. Other goals he still needs lots of work on. Goals like pulling himself forward with his arms while he is on his tummy.
Bottom scooting wasn't on his goals but getting mobile was so he is all good!! And a FYI tip: Bottom scooting on carpet without a diaper can lead to carpet burn in not so fun places!! And puddles too!
We brought home the Theratog suit that Asa has been using during therapy. We'll also be ordering his very own! We were concerned that he might get too hot while wearing it under his clothes. He'd had it on for several hours and was so sleepy while we were grocery shopping. I noticed he was looking especially droopy and checked. Yep, he was getting too hot. In the middle of the check out line I started undressing him and undoing all the velcro!! I'm sure we made a sight but once I got it off, he stared cooling down and was fine.
We are having some trouble with his tummy still, even though we have started the motility med back. Some of it might be because we have gotten loosey, goosey with his feeding. If he won't eat at night before bed then we kinda shrug it off and let him go to bed without a bottle. But many mornings he is very gaggy and spitting up mucus yuck! I don't think we skip meals that often but maybe it makes a difference.
He has also been have several "episodes". I wish I had a medical term or explanation but "episode" will have to do. He reacts to something and gets hot, sweaty, gaggy, pukey, noodley and then will puke or we vent and he'll go to sleep for a few minutes. So far this has happened when he flipped his car over, cried too hard while we went to the bus, feeling uneasy because I was only holding his hands while he stood, some unknown reason while playing in the floor and because of the cool wind while going in a store. All random, different stressors but the same reaction. He doesn't react as badly as he used to and not as often but they seem to have flared up this week. It is hard to know what will set him off. And it is sometimes impossible to spend the time needed to get him through an episode. He'd love to just stop and have calmness and be rocked and doze for a few minutes.
On the plus side, Cade got the new tobyMac CD for his birthday and we have been rockin' out in the minivan!! I looked in the rear view mirror and Asa had his hand in the air waving it around like he was dancing! It was so funny!!!
And he is pointing at stuff like crazy. Sometimes we get to where he was just pointing and he points in a different direction!! I think he is just trying to train me! I usually follow directions pretty well!
Sorry there are no pics tonight! I'll do better next time....promise!
I love that you added Asa's complete story to the page. It is so interesting to see how each child is affected differently, and how each child got their diagnosis of Mito. I think of you guys very often.
ReplyDeleteLove,
Meghan