Thursday

Asa has had his first mobile accident today! When we got home this afternoon I sat Asa in the floor and we all went out to get groceries in. Cade and Gracie had made it back in but Anna and I were still at the van. Suddenly we heard a thunk and then crying. Then Cade and Gracie talking and calling me. When we got in Asa had been scooting and pulled on something. He slipped and fell backwards, bumping his head! He was fine but all of the excitement made him get gaggy and pukey and tired.

Then tonight in the kitchen he did the same thing. I guess this is the beginning of many falls we will experience!

At PT today Asa used the Theratog suit again. Everyone comments on how much better Asa looks in it. Not just Asa's therapist but the other therapist in the gym. It is exciting to see them all so happy for him. Nancy had the booklet and she took some measurements to order his own set. There are a few options and she wants to be sure we have it all covered so she wants to ask the OT about it too.

If you can't tell, the suit is actually a back vest, front vest and then hip supports. It all velcros together and is very snug to give him a little support but mostly just pressure. There is also a part that velcros to each side from under the arm to the knee. And then the whole set includes ankle or wrist cuffs and straps. It is very involved but seems to help by giving him a little feed back when his body gets out of line. Asa tends to flop open so we get him into a more closed position and velcro the pieces together. The white tabs in the first pic are the pieces of velcro. Do you remember that Asa has an issue with velcro! He hates the sound!!! He has gotten better but let's just say by the time we are done with him, he'll be completely over it!!! :)


At feeding Asa seemed interested but he is just so hesitant. I asked if I could try to feed him the babyfood. He let me give it to him but if Beth tried, he refused! He had a few bites of oatmeal (a first!) and some babyfood. I asked how therapy got turned into me forcing him to eat while the therapist was the good guy playing with him!! I'm only kidding. It really went well and I'm looking forward to trying more oatmeal tomorrow!!

I also had a chat with another therapist today about mito. She has some biology background and is gonna look up any info she might have. She was hesitant in asking about his diagnosis. I told her I could talk to a brick wall!!!

A day out after the snow!

Yay! The kids go back to school tomorrow!!! Actually, I can't complain today! Gracie went with me and Asa to therapy. When we came home, Cade and Anna had the house clean. They dusted and vacuumed!! It really looked great!!! And I really enjoyed Gracie being with me too! Maybe I'll homeschool.....oh, wait, I'd have to teach not just make them do chores! Nevermind!!!

Asa used his Theratog suit again. He walked on the treadmill with it on. Then he used the same harness and walked around the therapy gym. Nancy said his steps are good. I think they are tiptoes and side steps but she said that is to be expected.

We also chatted about his bottom scooting. I'm hesitant to be too excited because he'll always do what is easiest for him. If it is easier to scoot and he can get where he wants, then why would he try to crawl and walk? Nancy said not to worry so much about it. This is first time Asa is able to want something and go for it. We have noticed that he started pointing at things during the same time he started scooting. Maybe it was just a development boom or maybe he realized he had options!! Nancy even said there is a train of thought that has little bittys like Asa in power chairs!! I can't imagine that. Although he'd be able to chase the big kids!! She wasn't suggesting it for Asa, just that conventional wisdom would say giving them an easy way to move would stop their development and that isn't the case. Interesting....I think I'll do some googling next!

Asa had his applesauce and beenie weenies at supper tonight. He ate alot. We stopped the motility meds so as much as I want to push, I'm not. If he gets sick we need to know if it is from lack of motility or from eating something that disagrees with his tummy. He has been gaggy the last 2 days and even got sick tonight.

I treated Gracie to McD's for lunch today. I plugged Asa's feeding tube up and then sat down to eat. When I looked over at him, he had part of the tube in his mouth chewing on it!!! It was so funny to see Gracie eating her burger and him eating his feeding tube! I got excited thinking maybe he wanted to eat so I pinched off a fry. When I offered it to him he gave me the funniest look! He was happy with what he was having, thank you!!! It was so funny!

I copied this quote from a friends Facebook status a few days ago. I really love it so I thought I'd share it here!

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with Down syndrome, brain injury, CP or other special needs doesn't TAKE a special family, it MAKES a special family."

This afternoon Gracie was laying in the floor watching cartoons. Asa was sitting beside her. I told her to lay him down and he might go to sleep. He resisted in the biggest way when I tried to rock him a half hour earlier. So Gracie laid him down and he did go to sleep! She rubbed his hand like he likes and he was out. He didn't sleep long but she was proud of herself for getting him to sleep!! It was adorable to see them laying there too!!!

Asa was a bottom scootin wonder again today!!! Anna moved Asa into the entryway while she played with Gracie. Asa scooted over to the front door and played in the side lights on the door. He loves then and we let him tap them when we come out of his room. But this morning he got there by himself and he sat and sat. He'd tap and then rub it. It was so funny. I don't know how long he was entertained by the front door but it was a long time.

Then when he got bored, he scooted back to the living room. He stopped at the stairs and was interested but didn't stay long. He scooted halfway back to the kitchen when I decided to try the Walking Wings on him. That wasn't successful and as soon as I got them off, he took off scooting again!

And there is no school again tomorrow!! When Anna moved Asa into the entryway this morning it was because she was playing volleyball with Gracie and Asa was squealing at them. Then tonight Cade and Gracie had walkie talkies and Nerf guns chasing each other around inside the house!!! And I feel like I was constantly feeding someone today!! Melt snow, MELT!! :)