JULY MEDICAL UPDATE During the week of July 14th, we had noticed that Josiah was beginning to shake his head more to focus on what he was seeing/looking at. We also noticed more nystagmus (eye movement) in his eyes. We continued to see it as the week went on, and others noticed as well. This made me extremely nervous, as this was the only symptom we saw when Josiah was diagnosed with his tumor. I talked with his oncology team and an MRI was scheduled for Friday morning at 8, with our appointment time at 7am. The appointment went really well, and Josiah did quite well with getting an IV in his arm (since the port is gone) and not messing with it a whole lot. He remembered the place…immediately asking for pancakes! Ruth Ann came along with us and mostly played on the Ipad they had let us use. Josiah was happy to ride on the stretcher and wanted Ruth Ann to ride as well. They had a great time.
The new MRI area had just been completed and had just opened that week. It was decorated in a beach theme, and the MRI machine was inside a giant “sandcastle.” Josiah was asleep before he went in, so he didn’t get to enjoy it, but Ruth Ann enjoyed looking in and seeing everything! It took a little bit for Josiah to wake up, and about the time he did wake up, the nurse came and told us the results. She said that the symptoms were NOT due to tumor growth! A huge sigh of relief and praise!
The next step was to see an eye doctor, which we did the following Wednesday, July 23. Josiah’s eyes looked the same they had at his last visit, which was great news. He will go back in 6 months. She also told us that it seems that Josiah is using both eyes and that they were working together, which was awesome to hear! His vision is less still in his left eye, but great to hear that it’s not gone completely!
Monday, July 28th, Josiah had a dermatology appointment for a rash on his hand. He’s had this for several months, and it would come and go. It started looking worse at the beginning of the month, so we saw our family doctor, and after a microscopic exam and culture, we began treating it as a fungal infection. Treatment wasn’t really helping, so we were referred to dermatology. The appointment went well, and we were told that it was just eczema and are treating it for that now. Hopefully it works and that’s the last you’ll hear of it! 🙂
Thursday, July 31, Josiah had an EEG at 8am. The EEG is a test that shows seizure activity. Josiah had this test done in order for us to (hopefully) begin weaning him off of the anti-seizure meds he has been on since right after his surgery. We should have the results by Monday at the latest. He did really well with the test, and was happy to sit on my lap and play, only crying and fussing when they were attaching the electrodes to his head. (I would’ve cried too!)
Josiah also got a new foot brace and shoe inserts. That means he got new shoes as well! He’s adjusting slowly to them. He has been using his right arm more; not a lot, just more. He will pull it up when getting dressed to put it into the arm hole. Now we’re working on pushing it through!
I’m hoping to post a monthly “medical update” on Josiah to keep everyone more up to date since I’m not doing the daily, or even weekly journaling anymore. We’re happy with how Josiah is doing, continuing to enjoy our summer, and loving our little boy who is much happier off of chemo!