I sent an email to discuss the lack of vision returning to her pediatric ophthalmologist. (Three years in and I’ve almost figured out how to spell ‘ophthalmologist’ without autocorrect jumping in to add a missing ‘h’ or ‘o’.) Was her edema a result of the cessation of the steroid drops or something else entirely? Why is the pressure high when it was always low before? We don’t have answers, but she did say the edema might take months to resolve—and we’re just approaching the end of month one on the Very Expensive Grey drops. That made me feel a little better because the last I had heard was “a bit longer than two weeks given that it may be a moderate amount of edema”.
What she and Dr. Trese did decide on was to add back in the steroid drops that quite possibly caused the edema in the first place when we titrated off them a few months ago, which are the best option to help the edema.
She now has the following drops each day:
- Pink drops six times left eye
- Grey drops six times left eye
- Purple drops three times left eye
- Blue drops two times both eyes
- Red drops once both eyes
And that’s only one of the things going on in my daughter’s life. There is also the eczema, repeated bladder infections and possible yeast infection as a result of all the antibiotics from the bladder infections. Plus all new teachers and driver.
So her stomach hurts all the time. All the time that is when she’s worried about something—which is a lot of the time. And she’s bored a lot of the time. Today she had a birthday party but didn’t want to go to the store to get a birthday present because he stomach hurt. Then she didn’t want to go to the party (which she loved) because her stomach hurt.
I didn’t know what to do but I had an idea. My daughter loves cats. She doesn’t have much experience with cats, but what she does have, she liked. I needed to go some place where she could pet a cat and the cat would stay still for her. I didn’t know, but you can go to the SPCA and just walk into the adoption rooms and see the cats and kittens. The last time I was in a shelter was with my cousin when she got her dog, Shasta, which was over twenty years ago.
After the birthday party I went with my daughter and we went to the rooms. The people in there were nice, but most of them didn’t understand. One gave her a toy on a string with a stick and my daughter tried to find the cat but was moving the stick towards her teenage daughter because it was a large enough object that she could tell there was movement.
We tried a room with some older cats but with the limited experience my daughter has in actually touching cats, she didn’t get the best response. I had to show he how to calmly pet (and not pat) a cat. It’s hard to know where to pet a cat on their body if you can’t see where the parts of their body is. So we left that room and waited to have a chance in the kitten room.
And that worked. A very kind staff member brought out a few kittens, working with a blanket and me and we found one calm enough to just sit in my daughter’s lap and purr while she petted him. We let her touch the parts of his body and I showed her the kinds of things cats liked done to them,
Then we left, my daughter telling the person who had helped us, “we’ll be back tomorrow”. I’m trying to figure out things we can do to give her experiences while her vision is so low. Maybe it will always be this low: it wasn’t much better before the latest loss, but at least it was more. I think today was a nice experience for my daughter, even if we can’t adopt a cat because her brother is allergic.
The Big Boy Update: My son is playing a very realistic looking game on the Xbox in the basement. It’s the most complex game he’s probably played, with a lot of reading necessary, but it’s beautiful and he watched my husband playing it.
No comments:
Post a Comment