PT update

Ben has started back with PT once a week. It was recommended at his 6 month meeting that he go back up to once a week to give him a boost before he ages out at 3.  His PT Was having him do some "step-ups" and "step-downs" off of a stool we have and watching how he did it and noticed that he still twists his body to step-down, thus using his side muscles instead of his quadriceps. His quadriceps are a bit weaker. Also, his left side seems to still be a bit weaker than his right side. This could be due to many many wires that were in his legs. She did ask about that when we were talking. She also mentioned getting a trampoline to work on his jumping skills, which, we now have.

Jumping in the trampoline with Klara

As soon as it came, we blew it up and all the kids wanted to jump in it. We got Ben in it and he did about 5 jumps right away and then sat down. He then got out for a few minutes. Then got a stool so he could get back in, thus doing more step-ups on his own! He did this many times over the course of an hour. He would get in do a few jumps and then get back out. He and the kids have been jumping in it and walking around in it a lot today. It is HUGE! We didn't really know how big it was when we ordered it. :/ It takes up most of the dining room. BUT, at least he will be able to work on a lot of his skills with this. Also, the girls can work off a lot of energy on days like yesterday when it was too rainy to go out. The other thing that the PT mentioned that she might want him to use are HipHuggers. These are lycra type shorts that are tight and are supposed to keep his hips aligned. He would only wear them a few hours at a time each day. And hopefully it would stop him from turning his hip out when he steps down off of steps. We are not sure when his next appointment will be. At the latest it will be Oct 4. But hopefully sooner. He is supposed to be weekly, but he has medical appointments the next 2 Thursdays that we can not move. An his PT is very booked up. She is trying to find a Friday that she can see him though. His next week appointment is Hematology. I am hoping his iron levels will look better since we have raised his iron. I am also hoping that his magnesium levels will look better since we not only raised his magnesium, but also spaced it out. Cardiology said that spacing it out instead of giving it all at once should help not only his GI issues but his levels. So, hopefully we will see that on his labs on Thursday.

And a pic of Ben and Joe. Just because.