First Post-Op Appt

The appointment. Ryan saw Dr. Hubbard today. Ryan and Peanut (his stuffed animal buddy who now accompanies us to each appointment) both had their eyes dilated. I wish I could say he takes the drops easier (with all the experience he now has) but not so much! Dr. Hubbard examined him and was pleased with his recovery. He does not typically do an in-office follow-up (he would just see him at the next scheduled surgery) but since he did the avastin injection, wanted to make sure he was healing well and had no negative reactions. So far, so good, on that front. He does think there is a reduction in the exudiation, but it will be much easier for him to tell when he does the next Exam Under Anesthesia on June 29th. At the same time, he'll do another round of chryotherapy on another set of vessels, and examine the ones that were treated last time. He'll do another avastin injection as well. It's likely that we'll do this at least 3 more times over the next year.

More Concerns.
Since Ryan's surgery, I've been doing what everyone says not to do -- search the internet for anything I can find on this disease. I still can't find statistics on the number of kids diagnosed with Coat's each year. It's that rare. What I have found is a very good site containing message boards with posts from families all over the world who are battling Coat's in some stage or form. From what I read, Ryan's case could be much better and it could be much worse. Sometimes it's good to be average... What scares me now is, even though we've come to terms (well, we have good days and bad days) on the fact that he will only see from his left eye and peripherally out of his right eye, are the secondary issues that he may face due to the disease, such as formation of cataracts, glaucoma, and atrophy of the eye. I read one frantic post from a mom that her daughter's eye was "dying" after her treatments which made my heart break for her. Of course, we want Ryan to appear as "normal" as possible, despite having such severe vision loss. I asked Dr. Hubbard about the risk of atrophy and he said in Ryan's case, the biggest risk for Ryan is Strabismus, a vision condition in which a person can not align both eyes simultaneously, so the eye turns out (commonly known as "lazy eye"). I asked about the dreaded patching of his non-Coat's eye (to strengthen the Coat's eye), but he said often the patching has little, if no, effect on affected eye, and surgery is often warranted instead to straighten the eye. Unfortunately, success rate for that surgery is limited when vision loss has already occurred, so we'll watch his eye closely and Dr. Hubbard will work in tandem with our pediatric opthamologist to determine the best plan for keeping the eye looking forward.

Also, since the unaffected eye will compensate for the loss of vision in the other eye, he will suffer some loss of depth perception; however, given his age, he will likely compensate for any depth perception loss better than he would if this condition presented later in his life. We'll just have to wait and see and hope that he can continue playing golf! Speaking of golf, when I put Ryan in the car after his appointment, he said: "mommy, I like Dr. Hubbard and Tiger Woods". He picked two good heroes!

Next surgery.
We'll post again after Ryan's next surgery scheduled for June 29th. In the meantime, we're spending a week at the beach and I'm told that Ryan can play in the water, sand, etc. like any other boy without an eye issue, which was a nice thing to hear.