Ian Update 2/29/24
Yesterday, we had an appointment with the brain clinic. The brain clinic is pretty much the group of doctors, specialists, and therapists that we saw while Ian was inpatient for rehabilitation right after his tumor hemorrhaged. It’s a long appointment, but a convenient to see a group of doctors at one time who we have to follow up with due to Ian’s condition.
We talked about increasing Ian’s ADHD medication. His school has informed us that he doesn’t work as well in the afternoons then he does in the morning. Ian used to be on an afternoon dose, but we tried taking it away because for awhile, he was just a zombie. Since doing so, we are seeing much more emotions from him, and he’s becoming much more himself. He’s happier and laughing and acting more like a kid. We are going to try to add the afternoon dose back, but we’re doing a much smaller dose, and seeing how he does with that first.
We also discussed the way Ian walks. It seems like he walks with a little but of a limp, and he locks his knee up a lot. Right now, we are waiting for Ian’s new leg brace to be in. Once we have that, if we are still seeing these issues, we are going to discuss possibly adding an insert to his other shoe that doesn’t have the brace to help balance him out.
With that, we also discussed that it might be worth getting his leg measurements checked. Apparently, when you have one-sided weakness, it’s not uncommon that the weaker side will grow slower than the stronger side. In Ian’s case, his right leg may not be growing as fast as his left leg, which could be another reason for the limp-like walking.
Another thing we discussed on that route is that Ian is at a higher risk to develop scoliosis also due to the one-sided weakness. To check for this, we have a script to take him in and get an x-ray of Ian’s spine, so we will be doing that soon. When we have time. Whatever that is.
Ian has also gained almost 10 pounds in the last month despite being more active and us watching how much he eats and what he eats. We have seen endocrinology in the past regarding possible hormone issues, but everything came back normal at that point. But they suggested following up again due to the different locations of Ian’s tumors and the brain injury putting him more at risk for hormone issues. With that, we may also be meeting with a nutritionist.
Last, but certainty not least, now that we’ve gotten Ian’s school schedule more under control, I will be putting my focus on getting him his Autism services. We’ve been trying for YEARS to get him outpatient and wraparound services, but it’s been a nightmare since COVID hit (which of course is around when he was diagnosed).
Unrelated to the appointment from yesterday, we also need to get Ian checked for allergies. He’s had a lingering cough since December, but he’s been checked for all the major illnesses (COVID, flu, RSV, etc.). It seems to be worse when the weather drastically changes and at night. But he hasn’t had any other symptoms with it.
And Mike and I have a 4-day weekend, but of course it’s accompanied with appointments. We have to take Ian down to Children’s tomorrow morning to get hooked up for an EEG (this checks for seizures). This was scheduled back in October, before it was confirmed through the hospital admission after Christmas that he was in fact having seizures. But we decided to keep the appointment to make sure his new seizure medications are working. We’ll get to bring him home afterwards with everything on him, and we’ll get him to be disconnected on Monday.
We didn’t plan this out very well though because our daughter’s school musical/play is also this weekend so we’ll get to bring Ian to that with leads on his head, a wrap around those, and a backup carrying the machine that will be monitoring the seizures. Yay, us?
It’ll be fine, though. Everything will be fine.
………Right?