Fun Weekend

Casey had a really great long weekend. On Saturday she watched lots of videos. I had her in her chair and put on "Up" for her. She loved it. Most of it I should say. When the mean dog started growling and being mean in the middle she got a little upset. I picked her up until the scene ended then put her down on the couch where she could see to watch the rest. She would talk to the tv every so often - very cute. Then when it was over she yelled for me to put on something else. She was very into videos Saturday.

Sunday her Cappy (my mom) came to visit with John for a little bit. Casey slept through most of the visit though. She tried to wake up a few times to say hello, but for what ever reason she was exhausted Sunday afternoon. She slept a lot, then refused to sleep Sunday night.

Casey slept all morning and into Monday afternoon. However she woke up just in time to play with her new friend Kennady. Kennady came over with her mom and 2 little brothers for an afternoon play date. Everyone had a really good time. Hopefully Casey can have them over again soon.

Sadly the weekend is over. Tim has a busy work week this week so it was nice to have the 3 day weekend. We hope everyone's weekend was a good one.

Back in the Water

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.

HUGE News!!!!

Today was a great day. Casey had her follow-up pulmonary appointment. He was happy with her xray (no more collapse). We talked about BiPAP and how much she has been fighting it over the past week or so. We talked about her overall status, improvements, risks, etc. After going over everything the doctor decided to D/C (discontinue) BiPAP. We don't get to get rid of it, but Casey does not have to be on it regularly anymore. We packed it up as soon as we got home. The plan is that in the future if she shows signs of any kind of respiratory issues (which she does off and on through the year) we put her back on BiPAP at night until she recovers. We also call pulmonary and will most likely start antibiotics at that time as well. We are very happy with the new plan.

We still have night nursing right now. We are going to see how this week goes. Taking care of Casey off BiPAP is 100% different than on. We will see how the night nurse adjusts to the change. If things go well then maybe we can keep night nursing a few days a week. It is nice to get a break a few nights a week and really sleep. Hopefully everything will work out well.

I am really looking forward to Casey sleeping through the night again. Once we get her back on a good sleep schedule we will start working on getting her to eat in her stomach again. I love days like today :)

We hope everyone is doing well. Casey starts back water therapy Thursday. She is going to be so excited. We will post more later about her off BiPAP progress.