By today it feels like things have stopped spinning. I feel like we are stepping out of the fog.
Its also been a rough behavior week for Jilli. Last Wednesday in therapy she had a hard time making safe choices. That night she had a really hard time listening to the point we wondered if she was getting enough oxygen. Since then it has been so many reminders about what is and is not safe. She has pulled stuff that she normally would not dream of. She is normally our rule follower... she is still a kid and has her moments normally but this has been unlike her. She has been resting a lot and has been asking for mid day rests. PT was rough for her again yesterday and she spent most of PT telling her therapist that she was boring. Now Jilli and her PT have seen each other almost weekly since Jilli was around Lydia's age, they like each other a lot... Jilli was likely being a pain because she felt like the normal things were hard and she wasn't going to say that outloud. She even started crying just doing a normal task. We talked and we think it is a mix of things... in big picture consideration of things we still are not that far from a crash but since this wasn't a big crash none of us gave her much recovery time because she seemed to be able to handle things but maybe she is showing us we still need to be wise and careful even after little crashes... and I think she isn't hearing a ton. She is back to asking "what" all day long. She mainly has ear tubes due to hearing issues and you can tell she is not hearing right now and I think she is frustrated and confused. Thankfully we see ENT next Wednesday and I am hoping they agree to put the tube back in. It was only out a week before her ear was infected and now the people who spend a lot of time with her all agree she is not hearing as well as she does with tubes. I am also hoping we can talk tube options to see if there is anything we can do that lasts more then 9mo because these tubes went in last September and as she is getting older she is showing more and more that she really needs them. Jilli is also starting speech again in a few weeks. As she is getting older we are noticing some gaps again, and communication is hard for her during and after crashes so we want to give her more tools for that.
Lydia on the other hand had an amazing day at therapy! She had one of her best therapy days ever! She worked so hard and stayed on task. She talked and was nice in speech which isn't always the case. She had sympathy for Jilli when Jilli was sad. She was a rock star! She has also really started to pretend play recently and I have loved watching how her brain works. She loves her Little People and her dolls. She also loves YouTube kids but I think today I am going to take the anger and delete that app because no matter how many videos I block she just finds other ones... she watches the strangest things... she doesn't need any help in learning how to whine more. Lydia's other obsession right now it the teethers that you put in the freezer. She LOVES them to the point we have a hard time having enough cold ones at any time because she has to have one all the time. She woke me up this morning yelling "chewy." It was also really nice that Monday and Tuesday nights she slept really well. We have been working on cleaning out her intestines and while I think there is still more in there I think we are making progress.
Tuesday we had a lot of fun going to swim in a friends pool. The girls loved it and it was fun catching up with friends. I look like a lobster after and the girls like normal look like they have never been in sunlight. I wonder sometimes if part of there genetic stuff is that they never change color from white.
Also a huge shout out to BuyBuyBaby in Brookfield! I went there yesterday with the girls looking at sun/rain covers for Jilli when she is in her wheelchair for when we go to Disney. They were SO helpful! They didn't end up having anything that would work but I was impressed by their costumer service... they did everything they could to try to help us!
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