Casey started water therapy back up today. She was so excited to be in the pool. That was until Margaret started stretching her legs. Casey really doesn’t like that part. She got through it though and was able to do some swimming. I think she was really happy to be back in the pool. I keep telling Tim we need to get one for her here in the back yard 🙂
Casey has been off BiPAP for 2 nights now. The first night was not so fun. She was in her room with her night nurse. Casey did not want to be in her room. She is used to sleeping in our bed and snuggling up. She refused to go to sleep. She fussed and carried on until about 3:AM. When she finally did settle down and basically wore herself out from complaining, she only slept for a couple of hours. It was a really rough night. We really like the idea of having a night nurse and a night off every now and then. It just isn’t worth it. We talked about it and Tim and I both would rather just put her back in our bed so she gets a good night sleep. She just isn’t ready for her bed. We can try again later.
Sadly, we no longer have a night nurse. I felt bad letting her go. She did not do anything wrong. Casey just isn’t ready. I made sure the service knew that the nurse did a good job. I still felt bad though.
Last night Casey was back in our room. She went right to sleep and slept pretty much all night. She woke me up a few times to suction (I don’t think she woke up). Around 6 this morning she was up. I thought she was just awake, but it was a diaper that woke her. I put her to bed about an hour ago and it is silent in there. She is so funny. At least she is sleeping at night again. Staying up all night to complain about BiPAP, then being in her bed, etc. had her sleeping all day. It was not working for any of us. I am so glad she is getting back to her old schedule again.
Next step for us is to start working on feeding her in her tummy again. This is going to be a very slow process. I think/hope she will do well with it as long as we go slow. As always we hope everyone is doing well.