Tuesday, March 24, 2015

Tuesday, March 24, 2015

February was pretty uneventful, other than Collin and me having a stomach bug that lasted eight days. Unfortunately we missed THON weekend at Penn State because of it, so we spent the weekend watching the live stream. It's not quite the same as being there in person though! Once again PSU raised $13 million for The Four Diamonds Fund... amazing!!

The last few weeks have kept us busy. Collin is officially registered for Kindergarten in the fall. He told me he doesn't want to leave the teachers he has this year, but I know he'll be in good hands next year too. After seeing how difficult it is for him to relate to his peers though, I do worry about how he's going to do in a larger, busier group of kids. He has difficulty tolerating loud noise, which also doesn't help. He has told me kids his age are "kind of wild," and it's easy to see that he's unsure how to fit in. Thankfully we just got paired with a TSS, or therapeutic support staff, which is an additional service that he qualifies for since being given the autism diagnosis in December. The TSS will spend time with Collin each week both at school and at home/in the community, and help Collin learn to socialize with his peers, coping skills to help with anxiety, etc. We met the TSS today, and he was wonderful with Collin. I think Collin will enjoy and benefit from their time together.

Collin's ophthalmologist, Dr. Frankel, who helped diagnose the brain tumor in 2010, unfortunately had to retire suddenly in December. So this month, we saw a new pediatric ophthalmologist who recently started at Hershey. Dr. Ely was very compassionate and kind, and she thinks she remembers seeing Collin during her residency when he was inpatient in 2010. She reviewed Collin's history, and did a very thorough exam with dilation.

Collin's right eye always looks bloodshot. Dr. Ely explained that this is called pannus. Blood vessels have grown into bottom of the cornea, which is normally avascular. This happened as the eye worked to heal the corneal abrasion he got in 2010. At this time the blood vessels are not blocking the vision in that eye, but they could if they grow into the cornea anymore. Dr. Ely will monitor this closely. She wants us to continue with lubricating drops, and has added Restasis to try to decrease the inflammation. Currently the right eye is legally blind, and is more nearsighted than before. She changed the prescription in the right eyeglass lense because of this. Both eyes have tiny cataracts, but they are worse in the left eye. These are likely a side effect of radiation, and I know of other kids who have needed cataract surgery years after radiation. The vision in Collin's left eye tested as less farsighted than before, so Dr. Ely changed the prescription in the left eyeglass lense to reflect this.

Since patching hasn't been easy (Collin frequently takes the patch off or peeks around it if I'm not right next to him to stop him), she discussed other options to try. Right now, a sticker has been placed over the left eyeglass lense to make the lense foggy and make the vision in the left eye almost equal to right eye. He can't see much with his glasses like this, and as he wears them, the right eye will be worked more. As it improves, a foggier sticker can be put on, and as the right eye gets stronger and he can see more with it, maybe Collin will be more willing to leave the patch on. Since he will have difficulty seeing with this filter over the left lense, he's allowed to take his glasses off to do schoolwork, because the prescription in the left lense is not significant. Dr. Ely said we have until 8-10 years of age to try to preserve any vision in the right eye. She will see Collin again in two months.

The day after the ophthalmology visit, we went back to Hershey for an ear cleaning and to have a new hearing aid mold made. Ever since radiation, the wax in Collin's ears is very dry, and needs to be removed by an ENT. Collin's next hearing test is in April, so he'll get the new hearing aid mold during that visit. We were also going to order new glasses that day, but for some reason Hershey isn't an authorized eyeglass provider by our insurance. So I got a list of authorized providers, and then went on a search for new frames. The first place we tried had very little selection, and didn't carry any frames that had detachable sunglasses. Collin's eyes are very sensitive to sunlight, so the sunglasses are important. The second place had more of a selection, and they were able to order a frame that comes with magnetic sunglasses for us to look at. It came in yesterday and we liked it, so now the prescription lenses have been ordered. Hopefully in another week, Collin will be wearing his new glasses.