Lyla didn't want to get up, but we made it on time and she did a great job at PT. Tere was a student PT, so I spent most of the session debriefing with Stephanie while Lyla and Kylie played kitchen, did stairs and played Candyland. Stephanie said se thought Lyla looked great considering what she had been through in the past several weeks. They took her pulse oxygen several times during the session and she was always within her limits. Twins will be a trend now and she'll start with only 45 minute sessions instead of an hour to make sure she doesn't get tired.
We talked a lot about how we thought previously that Lyla was getting crabby during sessions because of her age and that we just thought it was behavioral. Nw we know she was probably like that because her body needed a break to recover. Poor kid could hardly breather and she still kept getting up time after time. What a trooper! Stephanie will continue to work with Lyla on her conditioning and do some PT specifically for her diaphragm. It will help her learn to breathe more efficiently when she's active so she doesn't get worn out so easily. I'm concerned about her having the stamina to make it through a day at school, but with the oxygen and some more time to rest, hopefully she will be back up to it by the time Spring Break is over.
OT went well too. Lindsay had Lyla taking off and putting on her shirt. She was also doing play dough, the porcupine and making Easter Eggs. She had a good time and Lindsay said she thinks Lyla is back to her baseline. I was disappointed because she had been doing better than baseline before. Whatever was going on in her brain that suddenly had her using lefty has either stopped or was just a fluke. Still, Lyla is motivated to work on her activities of daily living goals and surprised me yesterday by going to the bathroom and brushing her teeth and hair all by herself. I think just being home has her feeling better about being independent. Now if only she would get back to walking on her own ... She only does it when she's really motivated.
Today so far we've had a delivery of more oxygen supplies and several calls from nurses and scheduling checking in on Lyla and trying to set up appointments for the next few weeks. She will have PT twice a week, once in the pool and once on land. She'll also have OT once a week and we've got pulmonology and psychiatry visits to fit in as well as a sleep study, oh, and physical medicine and rehab. We'll be busy, but hopefully it will help us better understand what is going on in Lyla's brain and body and how we can help her live the best life. A this point, she's very excited to be active, but she tires quickly. Her sats are ok during the day, but fall quickly when she falls asleep.
She wears a pulse oximeter at night that shows her pulse and her oxygen saturation. When she falls below 90 I have to hook up her oxygen and out on a nasal cannula. It's not her favorite, but she tolerates it well enough. Even with the oxygen she is not always at 100% but pulmonology said that was ok. She gets two shots from her "puffer" in the morning and evening instead of nebs. It's working out well and if she has to have lung medicine every day I'd rather she have the puffer than the nebs.
I'm waiting on the report from her psychological testing, but the psychologist said Lyla did very well and she scored in the 95th percentile. My smart girl!
Today Lyla slept in and work up ready to dye eggs. After boiling and cooling the eggs, we were ready to decorate. And then the phone rang and we had to go get her oxygen supplies. And then we came back and out tabs were dissolved and it was time to add the water. We had fun dyeing the whole dozen! And snacking on Lorna Doones at the same time, of course.
Pics: the oximeter probe she wears n her toe at night, the oxygen corner with concentrator, oximeter and supplies, Herky the supervisor, Lyla getting ready for egg dyeing, the dyeing, Lorna Doones! And the finished product.
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