Josiah has a great team of doctors caring for him. He’s had a few appointments this year already, and more in the coming months, so I thought now would be a great time for a quick update!
Things have been relatively quiet on the medical front these days, and we are extremely grateful! That’s not saying we’ve not had appointments. The appointments are just more routine and that’s the way we like it!
This is perhaps the biggest change for Josiah. He has switched from using braille to using low vision tools. I thought this just meant large print and the slant board he used at school. We took him to a low vision clinic in November, and they recommended several tools to help. These are AMAZING!!! An organization called Lighthouse for the Blind has provided us with some of these low vision tools to have in our home, at no cost. Josiah loves them and has been so excited to start reading with these tools, and we are working on getting him using similar tools at school so things can be consistent in both locations.
Josiah still has appointments every 3-4 months. They’re mostly to check his growth and see if any of his medications need adjusted. He HATES the lab and getting blood drawn, so they try to do this as little as possible. He’s not needed much adjustment to his medications, and he is growing quickly. One report I saw predicted his height at almost 6 foot tall. One more foot and he’ll be my height, so I don’t doubt that report at all!
Because he’s growing so quickly, that has the potential to cause problems with his legs and muscles, since he’s already so tight anyway. He is seen by an orthopedic surgeon yearly. He had that appointment this week. One leg has been shorter than the other for quite awhile and we’ve been in a “wait and see” pattern. This year with his growth, the leg length difference was quite noticeable. This can cause problems with his ankle, hips, posture & spine, etc. It’s hard to tell if the difference is enough to consider surgery just by looking at him, so he’ll have some scans and X-rays done in April so they can actually measure the bones and have a more accurate picture.
The two surgery options were a leg-lengthening surgery or a leg shortening surgery. The shortening surgery is the “easy” one, and can be reversed if his other leg catches up to him, so that would likely be the option chosen if surgery is needed.
Josiah also sees the rehabilitation doctor yearly and as needed for Botox injections. On average, he’s had about 3 injections per year. She works closely with the occupational therapist, physical therapist, and orthotist to schedule the botox and get the bracing/splints needed. He just received botox in his calf today in order to help the tightness, which will help him not be fighting against his brace, which can cause redness/sores and pain. It hasn’t been a big problem, but we’ve dealt with it more this year than we ever had prior. He’ll be getting a nighttime brace for his foot and hopefully that’ll help keep him stretched out.
We aren’t going to be focusing on the arm as much anymore. He uses it well as a functional assist, which may be all he ever will use it for. The goal now is to ensure the tightness in his arm does not cause him pain. He’ll be getting a resting hand splint to use if he does have pain and to help keep it stretched at night. His brace for the day works great, but it doesn’t allow as much functionality for him, so he gets to choose whether or not and when he wears it. (For example – in the brace, he is not able to open markers because he’s unable to grasp the marker with his wrist in the position the brace keeps it in. But without, he’s perfectly independent opening markers.)
Josiah is scheduled for four weeks of intensive therapy this summer. He continues to get some therapy at school and we do our best to do his home exercises. He also enjoys the crossfit kids program, and that gives him plenty of exercises to work on as well! His ninja moves keep him active, which keeps the rest of us on our toes!
Josiah’s down to yearly MRIs now, and the next one is scheduled for the end of February. The pediatric surgeon who did his surgery is no longer at MU, so he won’t be followed by a neurosurgeon unless an MRI would warrant an appointment. The oncology department is able to provide all the information necessary after the MRI. Josiah has been having some anxiety with appointments and needles, and the MRI requires blood draw and contrast, so an IV will be required. We’re trying to figure out how to help him with the anxiety and fear he has and the effects it causes.
A week after the MRI, he’ll see a neuro-ophthalmologist for an updated vision exam, in addition to the information the MRI can give concerning his vision. This is a new doctor in Kansas City. It’ll be the first time we’ve travelled away from home to see a doctor. MU doesn’t have a pediatric neuro-ophthalmologist, so we didn’t really have a choice. We were given several options in KC and STL, so we picked one our insurance covered and are hoping for the best! I think it’ll be a good thing to get some new eyes on him and maybe learn a little more detail about his vision. I’m just not looking forward to the drive!
That’s it…I think!
So overall, things are going great! Josiah continues to do well at school, and is keeping up with his peers. He’s right on grade level in math, and reading is coming along well. We’re working on his IEP for the next year and that’s gone well. We’re grateful for great teachers and staff at the school who love and care for him, and that he really loves it and is thriving there.