Mira had the last of her swim therapy sessions today and fortunately, I was able to actually get in the water with her. It was amazing to see how excited she was when first getting into the pool. All arms and legs were going in every direction and she was smiling up a storm. She simmered down after a few minutes, but was enthusiastic and smiling the entire session. I think she really gets a ton of sensory feedback when she was in the water. Despite having the luxury of the water to help support her in the pool, it is still an exhausting endeavor to hold her in the water. Sometimes it feels as though she is a 4-arm octopus who is constantly trying to squirm in every direction imaginable. Her coordination is all over the place, but I think the therapy is very beneficial for her. Hopefully, the session offered over the summer will again be available in the fall - I think CCVI is going to try and work something out to make it a permanent part of their schedule.
Right after swimming, Mira had an endocrinology appointment, which was brief and uneventful. We didn't realize it had been so long between Lupron shots, but it had been over three and half months, when we should have been in clinic after two months. Mira has been receiving Lupron shots for the past several years, as we started to see signs of precocious puberty before she had even turned 8 years old. Because of all of the seizure activity she has been enduring for years, her hormonal balance is completely out of whack, which apparently is not uncommon with kids with neurological issues.
After Mira's bout of irritability and seizures on Sunday, Monday, and into yesterday, she rebounded and had a fantastic day today. She was very vocal at school, focusing on objects as well. Her enthusiasm continued at the pool and even at her appointment, which lasted over an hour from start to finish. She took a quick nap when we arrived home and has been happily playing and racing around the house. We saw some brief myoclonics this morning, but no other seizures all day long.
3 comments:
Does she have a swim float? Reagan has both the waterways babies float and the Danmar head float and they allow her to float freely. Definitely a different sensation for kiddos who always have to have support!
We're also in the same boat with precocious puberty...but Reagan's endocrinologist has recommended she not get the shots. She said it's better for her bones to go through the natural course of puberty (at least for a yr or two). Not looking forward to that!
We had a swim float when she was younger, but she has since grown out of it. We aren't able to get in the pool as much as we like to any more - the place where she has therapy though, has a couple of them. She has tried the float every week - sometimes she likes it, other times, she squirms and fights it!
The Lupron shots were a tough call, but since she we were seeing signs so early (age 7), it seemed appropriate. We were told by endocrinology that once puberty hits, her growth would greatly diminish and she could end up very small. At the time we started, she was around 60 lbs. and not very tall. This past year she has skyrocketed in height.
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