It’s been awhile since writing, and it’s been a good break for me. January was a nice break in our schedule, and we were home for most of the month. Due to health insurance changes, Josiah had to go through the pre-approval, evaluation and testing process again. Although I tried my best to stay on top of everything, paperwork moves sloooooooowly, and therapy didn’t start up again until February. Again, it was a nice break! He did receive therapy through the school twice a week, so he wasn’t without, but even some of those were cancelled due to snow days and sickness.
February was a super busy month for us schedule-wise, and I felt like all I did was leave home, come home, drop something off, leave again, come home and crash. As mentioned, Josiah increased his therapy back to his normal 4-5 days a week instead of the 2 days a week we had grown accustomed to in January. Grace started back with violin lessons and Samuel had his first guitar lesson. We also joined a homeschool co-op, which started the first week of February. Basketball games started on Saturday mornings, and all the kids had dental appointments for cleanings. Ruth Ann had a few cavities that needed fixed, and had several appointments for that. We had a few opportunities to serve at church, which Grace and Samuel have really enjoyed. All good things, but when they all seemed to happen at the same time, I was needing a bit of down time!
In January, Josiah saw a neuro-ophthalmologist. The doctor was very detailed and we were able to see the pictures of Josiah’s most recent MRI (December). There is no evidence of tumor. We could see the tumor bed, basically a hole the tumor had made, but again, nothing “lighting up,” (Lighting up shows active tumor.) Josiah did really well with the exam, although he kept saying, “This is boring.” I’m not sure he knows what boring means, but he seemed to like that word well that day! He did enjoy playing with the “flashlight” (pictured). Josiah’s right eye is where most, if not all of his vision is, which we already knew. When his right eye was covered, it was obvious Josiah was struggling to see. He kept moving his whole body around and turning his head in an attempt to see. When we pulled the patch off of his good eye, he exclaimed, “Whew! Now I can see!” That’s the first time we’ve heard and seen his obvious lack of vision. They also took a picture of his optic nerve, which was not an easy task. They were only able to do the right eye. In order to get a picture, he had to focus on an object inside the camera and be completely still for at least 5 seconds. Without being able to focus with his left eye, that side was difficult to capture. But we at least have a baseline for the right eye and can monitor any changes, if any, occur. He doesn’t have to come back until next year, unless we notice any problems.
Josiah also had a long (8am-12pm) clinic day, where we met and talked with numerous specialists. We started off with a pediatrician and nutritionist. Nothing really new in this area, although since he is four years old and nowhere close to being potty trained (because of his Diabetes Insipidus), we learned that insurance will pay for diapers. That sounded great to me! Later, the company called and said they would DELIVER the diapers to our door! The little things… 🙂
Josiah was then seen by speech, occupational, and physical therapists. All were pleased with his progress. The orthopedic surgeon then came, and he is just following him for now, and doesn’t anticipate anything requiring surgery in the near future. Depending on how he grows, surgical options would happen when he’s 11-13 years old, but only in the event that corrections cannot be made with braces. A current example of an “issue” is that Josiah’s right leg is slightly shorter (1-2 cm) than his left. If the difference in leg length were an inch or more, that is when we would look at surgery as a possible option.
Finally, Josiah saw the rehab doctor and orthotist (who makes the leg/foot braces.) There were some issues with Josiah’s current brace, which at only 6 months old, is considered OLD. It ended up being broken, so we took it to the orthotic place to be fixed, and waited around Columbia, which took awhile. We grabbed some lunch and picked up prescriptions while we waited, and were finally on our way home around 1:30. The rehab doctor ordered new foot braces, and Josiah had an appointment the following week for casting and ordering. In order to know what sizes to make the brace, they put a cast on his right leg and around his foot, then cut it off and send it in for a custom brace. Josiah was not thrilled, especially with the cutting part, as it was noisy and caused his leg to vibrate. For the left foot, he simply had to step into a foam block to make an impression of his foot. Lesson learned—do the left foot before the right…
While Josiah wasn’t thrilled with getting the casting done and getting a new brace, he was excited that he was able to pick out construction trucks to be on the velcro straps. Hopefully he’ll be happy with them. I’m not thrilled with a new brace because that means shopping for new shoes. Please refer to my post on Shoe Shopping and see what I get to look forward to! We shall see…
I also mentioned we went to the dentist. This was Josiah’s first visit to the dentist, and he was a bit nervous and excited all rolled into one. He talked a big talk about going to the dentist, but once there, he wanted nothing to do with it. Even after watching Grace and Samuel. Here’s the progression:
He did finally open his mouth after they gave him a tooth brush and asked him how he brushed his teeth. He grabbed the toothbrush and started brushing, and they were able to do a quick look.
Ruth Ann wasn’t seen at this visit, because she had just completed getting her teeth worked on and fixed. She was a trooper and did an excellent job with having her cavities filled and even caps on two of her teeth. She did enjoy having her picture taken and getting to see what she looked like with the laughing gas to help relax her.
One final and exiting news is that Josiah had TWO nights that he slept in his own bed for the entire night! We usually put him to bed in his bed, and he’ll end up coming into our room anywhere between midnight and 4am. Last Tuesday morning I had to wake him to leave for therapy, and Wednesday morning he came in at 6:15, just 15 minutes before my alarm was to go off anyway. Unfortunately he didn’t do that the last two nights, but there’s hope for full nights of sleep in the future, which is super exciting to me!