May 5, 2011

In my last blog post, I mentioned that Collin had his six-week post-op visit with the ophthalmologist who did his eye surgery in March. It was a frustrating visit; to make a long story short, there was a lot (ie. too much!) of waiting, and in the end we only saw the ophthalmologist for about three minutes, and I never got to finish talking to him. He emailed us a copy of his visit summary & recommendations. Collin's eyes did not respond to the surgery as well as the ophthalmologist originally expected, (and I actually think the right eye has turned back in a little bit since the surgery), and he is recommending two more surgeries. I'm not sure what his timeline is for the second surgery, but the third surgery would have to be at least six months after the second surgery. When I discussed his recommendations with Collin's oncologist, she recommends waiting until Collin is finished with his maintenance chemo, which I believe will be sometime in July. So as things stand now, nothing further will be happening with Collin's eyes in the near future, other than possibly seeking a second opinion. So, I continue to patch his left eye for two to three hours a day. I recently decided to start patching him during his therapy appointments so he is kept more occupied and distracted while the eye patch is on. Originally I was purposely not patching him during his therapies because I was afraid the eye patch may hinder his therapy, but interestingly enough, it hasn't gotten in his way at all. There are actually times when he seems to do better with the patch, so his therapists and I have speculated that the patch probably takes away the double vision we assume he has, and allows him to see things easier. Oh how I wish Collin could tell us!

Collin has been doing so well in his therapies. In speech therapy, he continues to learn new words, and his ability to blow a bubble on a wand or to blow a plastic horn hard enough to make it whistle is progressing. Yesterday in occupational therapy, he used his hands (with some assistance of course) to make a Mother's Day gift for me; he decorated a styrofoam cup with crayons and stickers, scooped soil into the cup, put marigold seeds into the soil, and poured water into the cup. Today in physical therapy he worked on balance and walking, and even though his legs were getting so tired they were shaking and we kept encouraging him to take a break, he wanted to keep going. He usually works so hard in his therapies that he is asleep before we leave the parking lot!

Today I took Collin shopping for new sneakers, and then decided to take him to the barber to get his hair trimmed. It was his first real haircut by a barber. I wasn't sure how he would handle it, but he sat in the chair and was a perfect angel the whole time! I guess after everything he's been through, a little haircut isn't scary at all! It was a beautiful and fun day, and it was nice to take Collin out to do some "normal" things.










I don't want to forget to mention that May is Brain Cancer Awareness month-spread the word!