"I'm ok with it", he said...

Just got back from Joey's appointment with Dr. T. We were kinda nervous about this one, since he hasn't patched too much in the last few months. Homework seems to consume the evening and before we know it, we've arrived at the end of the night with no time left to patch. It seems to be the easiest thing to knock off the "to do" list.

So we were pleasantly surprised to find out that his vision had actually improved in his Coats' eye! After the exam, the nurse puts the drops in his eyes to dilate them - this is actually the part he hates most! Then...the wait for the drops to take effect. The nurse dims the lights in the room, and puts Tom & Jerry on the little TV for him to watch. Here's a photo of him doing just that...









But before he laid down, while it was just the two of us in the room, he walked over and sat down and said,

"I'm ok with having Coats' Disease".

I said, "You are?"

He said, "Yeah"

He continued, "I could have a pencil that doesn't write very well, but I could still use it. My motorcyle doesnt work very well, but I can still ride it...(pause)...I can't see very well with this eye, but I can still see".

I was amazed at the wisdom his little mind had worked out.

I started to say, "You're right. You, know, nothing in this world..."

He finished for me, "...is perfect".

We then talked about a place where we would one day be perfect.

...Then he laid down on the cot to watch Tom and Jerry and waited for Dr. T to come in.

2009 Coat's Disease Update

Haven't updated in a while because things have been uneventful. Which is a good thing. Joey had his last eye exam a couple of weeks ago and his Coats' eye remains stable. We'd like his eyesight to improve, but if it doesn't improve, staying the same is the next best thing.

The Dr's office had some "patching charts" available on which Joey can stick his patch each day and eventually the chart starts to look like a cool design. I bought three at $3/each. Really, they should have just handed them out, since they have pharmaceutical ads on them - seemed more like a promotional freebie-type item to me. But what the heck, I bought some. Here are some photos of the charts:











I know I've mentioned before that he really hates getting the eye drops that dilate his pupils. Oh, how he hates that!! It used to be that his eyes stayed dilated for a couple of days, but now it seems they're back to normal by the time he wakes up next morning. On the way home, he always wants to wear those disposable sunglasses that they office gives out to their patients. He prefers those, even though we've bought him a million "cool" sunglasses!

As for the results of his exam, his retina looks dry (which is good because it means no leakage), his vision remains the same, and the cataract has not grown. These are all good things. Glad its summer because patching will be easier (well, if not easier, at least we'll have more time to do it!).

When he was younger, he didn't care if others saw him while he patched. He'd play with other kids, we'd run errands, etc. Now he cares. Not too long ago I suggested he patch and go play with the neighbor kids (you know, multi-task!). He looked at me and said, "...in front of my FRIENDS?" I guess not.

Well, that's it for now - as I said, it's pretty status quo on the Coats Disease front. Just wanted to keep in touch with everyone who might be keeping up on us either because you know us, or because you are on a similar journey.

Til next time!

White Eye Photo

Joey was diagnosed in 2003, and as I've shared in one of the first posts on this blog, it was a photo that clued us into the fact that something was not right. I'm surprised I haven't posted a photo of this sooner. As I was browsing through photos tonight, I came across this one and thought it was a good idea to post it.

This is what Coat's Disease looks like:
(Click on the photo to enlarge)