James is our little rockstar. We don’t know what changed this school year, but he’s making some awesome progress in physical therapy. Even at home when he isn’t required to work, he still shows us what he can do. I should probably put a little bit of a disclaimer in here. Some people may look at the videos I am about to share and say something like, “oh, my kid can do that. What’s so great about that?” That’s great that your kid can do that, but the fact that James can do these things is huge for us. With his neurological deficits, cerebral palsy, and muscle tone abnormalities, we weren’t sure if he was going to be able to much of anything.
A couple of weeks ago while James was in physical therapy, the therapist had him lying on his side and his one-on-one nurse was on the floor behind him. The nurse started calling his name, and James eventually turned his head towards her and rolled onto his back. Both the therapist and the nurse were ecstatic. We would have been too, if we were there. That is something he had never done before. Just to be sure it wasn’t a fluke, they decided to try it again. They put James back on his side and the nurse called his name. He turned his head and rolled onto his back so that he could see the nurse. They tried it again, and again he turned his head and rolled onto his back. Unfortunately, there weren’t any videos so we couldn’t see for ourselves.
But it didn’t stop there. With a little bit of assistance, and a little coaxing from his nurse, he was also able to roll the other way…from his back onto his side.
Even at home James is still putting in some work and showing us what he can do. If you haven’t been following this blog, or missed a post or two, we bought James an arch for his birthday. We use the arch for tummy time to put him on a bit of an angle to help drain his secretions. Earlier this week he was on the arch, getting a breathing treatment, and just started lifting his head. This may not seem like a big deal for most parents, but for us, this is HUGE!
If you missed the last post, James went to see a new pulmonologist to see if he had other thoughts or ideas of how we can better handle his secretions. Because of his inability to suck or swallow, James in unable to manage his own secretions, so we need to suction his nose and mouth to keep his airways clear. The pulmonologist prescribed a new breathing treatment, recommended we use a patch instead of a liquid medication he had been taking to help manage his secretions, and ordered James a percussion vest. The vest has arrived, and here’s a video of James using it:
It’s supposed to loosen up any mucus or gunk so that we can suction it out. If you want more information about percussion vests, check out this website:
https://www.respirtech.com/therapies/incourage.html
Stacy was worried about his g-tube getting jostled around while using the vest, so she made a belt to protect it. It’s basically just a couple pieces of fabric with a small foam donut in between. The donut provides a little protective cushion around the g-tube.
With all the work James has been putting in with his therapies, you would think he deserved some down time. Nope. He still has to do the job that his teacher assigns each of the students. This past Thursday he was the Mail Manager.
How much mail could a preschooler possibly get? I doubt they are on any mailing lists yet so they’re probably not getting any junk mail.
Okay, so I guess it’s not all work. Sometimes they get to go outside and enjoy the weather. Here he is chilling in his wagon with his teacher and their classroom guinea pig, Lou.
