Ian Update 3/9/24

Hi everyone,

In my last post, I mentioned a few things that were going on with Ian and some tests he had to have done, so I just wanted to give a quick update on those.

The ADHD medicine had a rough start. It seemed like Ian was actually falling asleep in school this past week after taking it. It may not have necessarily been the ADHD medicine making him fall asleep, but it certainly wasn’t keeping him awake to focus. From what his teacher reported, it seemed like Friday he had a really good day. Normally, Ian refuses to do school work in the afternoon, but Friday was reported to have done his school all day, which is awesome. Hopefully this past week was just a fluke, and we’re on the right track now.

Ian’s brace is starting to rub on his skin because it’s getting too small. He was measured for a new brace 5 or 6 weeks ago, so we are hoping to get a call that the new one is in this week.

We are also still waiting for the results of his EEG. Ian’s school reported seeing seizure-like activity this week, which I reported to his neurologist. We are still waiting to hear back if they think what was presented was possibly a seizure, what to do next, and what the EEG may have shown.

As for what I thought would be getting Ian tested for allergies, the doctor decided to try to treat him for a sinus infection first, so he is currently on amoxicillin. I haven’t noticed the cough at night since starting the medicine, so hopefully that truly is all this is.

The last update is about Ian’s x-ray that he had to have done to check for scoliosis and measure his leg lengths. It was reported that his spine did have a very slight curve to it, but it was so minimal that they noted it could have been the way he was positioned, so they are not overly concerned about it at this time. As for his legs, while there was no length discrepancy, it was noted that Ian has demineralization of his leg bones, and he may have a slight right hip dysplasia (hip joint is not developed properly and socket is too shallow). They said they aren’t surprised by this given his right-sided weakness. Right now, we are to just repeat an x-ray in 6 months to see how it’s developing and supplement his diet with more calcium and vitamin D to help support his bones.

As of this moment, we are free of doctor appointments until May 1. This will be Ian’s follow up MRI and check in with oncology. I pray the next 2 months actually stay that way.