Wednesday, September 29, 2010

July 2010 post from other blog

patching update



Yesterday we had an appointment with Calvin's eye dr. I am always extremely anxious about these appts because it is devastating when we slide backwards (which we have done a few times) and frustrating when we don't progress (which we do most of the time) in spite of our best effort and bleeding of our checking account to keep him in a patch and glasses.

This appt. Calvin stayed the same. His vision in his good eye is 20/20. In his bad eye it is 20/80 uncorrected and 20/50 corrected. My hope is that he can move to 20/20 corrected in his bad eye. I don't know if that is a reasonable goal or not. Calvin still doesn't have 3D or depth perception. The 3D vision check is when you put on the 3D glasses and then look at the circles or animals on the special paper and see if any pop out of the page. None ever pop out of the page for Calvin.

The dr. was actually very excited about our "progress" since our last visit. He says he fully expects kids to go backwards in the summer so the fact that Calvin hasn't moved backwards is very good news to him. He figures if we can just hold on to where we are now for the rest of the summer it is really good. Then in the fall when school starts and there is more concentrated eye activity hopefully we can progress forward.

The dr. also said that for the severity of Calvin's eye problems, we are probably in the top 10% of outcomes so far. This surprised me b/c I feel like we are absolutely failing. We haven't made any progress in a year. He hopes to move us into the top 2%. I don't know if that is full vision or not but I wish I did know so that we could moderate our expectations. Instead of hoping for full vision restoration we could just be happy to do our best. Dave is especially anxious about full vision restoration no matter the cost whereas I'd be happy if we could just quit now and not have to worry about this any more.

We started patching 4 years ago. After a pretty short time, maybe 6 months, Calvin did have corrected 20/20 vision. Then his glasses broke and we went a few weeks w/o his glasses while we ordered new ones. (I learned to always have a backup pair ready from this experience). By the time we got his new glasses he had lost his corrected vision. Since then we have never been able to get better than where he is now at 20/50 corrected.

Summer is a really hard time for patching b/c we spend time in the pool and we are busy and it's hot and the patch itches...... when summer first started I told Calvin that if he would wear his patch all the time w/o me having to fight w/ him about it. If he put it on when I asked him to do so and kept it on w/o a fight I'd take him to disneyland the day before school started -- just me and him. He thought it was a good idea. 2 minutes later I asked him to put a patch and he threw himself on the ground and cried. I gave him a few more tries over the next couple of days and he was never willing to do it w/o a fuss......

Patching:4 years down. ??? to go. Patching is WAAAAYYY harder than residency. I could be a resident's wife forever. I could not patch forever.

Funny side story. one family in our ward who had to deal w/ patching in their little boy joked w/ him that "if you wear your patch, then you can have a little brother." Currently he is youngest of 4 and the family had no plans to have more kids. Oldest kid is 16, and the youngest boy who is the patcher in the family is 8. Well low and behold a month ago the mom of this family (at age 43) SURPRISE!! found out she is pregnant. She didn't find out 'til she was about 5 months along! Anyway, they will be having a baby boy so little William got his wish for a baby brother. He actually was a great patcher! I did tell Calvin about this and he was pretty impressed. I can't make any promises but perhaps he can have his own wishes and hopes.

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