If you couldn’t tell, the title of this post was to be sung to the tune of, “Let’s Go Fly a Kite.” I’ll wait here while you go back to the beginning so you can have appropriate musical accompaniment to this post.
Okay, now that we’re on the same page, let’s talk about where we are with my daughter and her eye condition. She’s home and she’s very happy about that. She and I were alone last night because my husband went back to Pinehurst to continue playing in the member/guest golf tournament with my father-in-law. We’re trying to have our holiday weekend as close to normal as possible and there was really no reason for my husband to sit around with me in a tiny hospital room when he could take my son and our dog with him and they could enjoy being together and doing normal things.
Today, my mother-in-law, son and dog drove here in the morning. My husband and father-in-law came to town after playing golf and we’re all enjoying the end of the day together. This morning, my daughter got up, came to see me and then told me what she wanted for breakfast: Poptarts, which we save for special occasions.
I told her we were out of the strawberry. I asked her if she knew where the chocolate ones were and she said yes and then she left to go get her breakfast. I went into the kitchen a few minutes later to find she had gotten the stool out and gotten the chocolate pop tart pouch (avoiding the other flavor.) She had put the tarts at her seat. When I came in, she was standing on the counter with the cabinet door open, getting the plate to put the Poptarts on.
She ate breakfast and then wanted to play with our neighbors. I texted them while she went outside by herself and colored with chalk for a while. Soon enough, Keira came over and they played for some time while I went to the grocery store to get groceries. (They went to my neighbors house to do an art project and my neighbor was watching her.)
When I got home, my daughter and I went to the hospital for an outpatient IV steroid infusion. This took a long time and she was unhappy, angry and difficult to deal with. She is in pain from the lumbar puncture and when she gets stressed she yells that anything hurts her body. This isn’t because it’s that bad, it’s because the steroids are at such a high dose, they’re putting her on edge, making her a little easier to agitate and making her a far more intense person to be around. We know it’s medicine though and it’s not for long so we’ve been doing the best we can.
When we got home Nana, my son and dog were here. My daughter went out to play with my son and neighbor again and came back in a while later. Then, she told me she wanted to ride her bike. I told her I’d be glad to ride with her. We got her helmet on and then she told me about the seat issue she’d been having with on her balance bike. When I understood the seat was rotating, we got a hex wrench and fixed the problem. Then she and I went out on our bikes and began riding up and down on the road.
But what about her vision, you’re asking me? The thing is we don’t know what it is now, if it’s changing constantly with the fluid build-up behind her retina and how it’s different from what the rest of us see. She doesn’t want to talk about it so we have to infer from things she says and does. For instance, on the way to the hospital today she said, “look mom, there’s a rain cloud up ahead.” She was right, there was. Then, she told me she could see road signs. This was interesting, because road signs are generally not that interesting to a child, but she wanted to tell me she saw them and what colors they were. I got the impression she wasn’t seeing them clearly, but that she knew they were there from how they were differentiated from the surrounding greenery.
At the hospital there were board games. She played Candy Land with her own rules. She couldn’t find the path on the board to move her piece without help. She wanted very badly to move to the special spots like the candy cane or gingerbread space, but she couldn’t find them so she gave up. Later, we did a puzzle together and she had more success, but the patterns were bigger and the lines were bolder.
Tonight, she asked to watch a television show, which she hasn’t been doing much since her vision issues started. We pulled over the tall, bar stool close to the TV above the fireplace and started a show. She asked my husband to move her back a little. We didn’t know if that meant there was a specific focal length she can see more in than others.
While she was biking, my husband came out and was standing in our neighbor’s driveway. My daughter and I were fairly far away at about three houses. I asked her if she saw someone at Bryna’s house ahead. She couldn’t see him. As we got closer she saw someone and thought maybe it was Bryna. When she got right up on my husband at about two feet away, she said, “hey daddy.”
There are lots of other examples I can give, but it’s all confusing with what she can and can’t see. We know the healing process won’t be immediate, but we want to see results now; stat.
The Big Boy Update: My son understands his sister is going to the hospital and it’s with her eyes. He can even talk about it. He doesn’t seem worried about her and is sort of more matter of fact about it. I suppose it’s because he’s a child and doesn’t have the weight of knowledge on his shoulders that we do.
The Tiny Girl Chronicles: My daughter’s vision may be fluctuating (see above for more details) but it’s hard to tell. We played a game today with Disney characters on cards. She could immediately identify the characters she knew. Hopefully her vision at close range will continue to improve.
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