A quick update first. Casey is doing a lot better. The ear infections have cleared out, and her follow up labs showed she no longer has cdiff. Yay!!! As soon as she got over these though she somehow hurt her hip. They are both dislocated (have been since pretty much birth). We are not sure if she just moved it wrong or what, but all of a sudden Saturday (7/26) she was crying every time we had to change her diaper. Of course that would also mean she had a lot more than normal diapers that day too. That continued through the weekend. As soon as we were done changing her and she resettled (within minutes) she would be fine again. I didn’t think it was broken, but it was definitely hurting her. On that Monday morning I got her out of bed and was waiting for the Ortho office to call and see about getting her in. Before the office opened I changed 3 diapers and she didn’t seem to care about any of them. Her hip seemed better so we opted to just talk with her PT on Thursday of last week instead. She agreed that it must have just been pulled or turned wrong and that Casey seems fine now. We are still watching it, but she appears to be over what ever it was.
Last week Casey’s primary day nurse was on vacation all week and the other day nurse was out sick. Both of our fill-in nurses were out of town as well. That’s okay though, I got to spend lots of time with my favorite little princess. Over the weekend I asked if she was tired of me and ready for her nurses to come back and she was quick to say yes. I was glad to have the day nurses back too. As much as I love hanging with Casey, I don’t get anything else done when it’s just me and her- no housework, no errands, nothing done with my MOM stuff, most days I don’t even get dressed until the afternoon.
Casey had lots of visitors over the past couple of weeks. Her friend Anjali came over to hang out while her mom and Tim worked with power tools in the garage. Her great grandpa came over to watch ponies and visit with her for an afternoon. One of her night nurses just became a grandma and she brought over her new grandson to meet Casey. She said Casey is his first little friend. She had some friends in the neighborhood come over to swim. Some other neighborhood friends came by to play and visit while the dads again- hung out in the garage with power tools. Even her dance teacher stopped by. Casey wasn’t able to finish dance camp so her teacher came by to bring Casey her tiara. It was nice to have so many visitors break up the days while we were home-bound without a nurse.
We have lots of changes in the works for September. Some good, some not so much.
We finally found a weekend night nurse, but she has already told me that she is not staying. One of our other night nurses is moving to days in September as well. That will mean we have 5 nights a week that we need to fill with a new nurse. I really hope it does not take as long to get us someone this time. I am still not physically recovered from the last nurse search. Staying up all night to take care of Casey, getting 2-4 hours of sleep, then getting up to run Casey to appointments or try to get my own stuff done only to stay up again and again and again takes a HUGE physical toll on me. The thought of having 5 nights each week coming up is making me a big ball of stress.
Casey sees a PT (Physical Therapist) once a week right now at the hospital. She has been doing this since she turned 3 and the school district took over her home therapies. We are going to try to use a different company during the school year to provide home therapy for Casey. We tried the same company that provides our nursing and I was not happy with the therapists at all. Now we are going with a company that only does therapy, so I am hopeful that it will go better. This is going to start in September as well.
School starts in September as well. It really starts in August, but with home-bound school it usually takes an extra week to get the schedule started. We liked Casey’s teacher last year, but we know she will not be coming back. I have no idea who the new teacher will be. I hope that it’s someone good that Casey likes. I hope we can find a good schedule this year that works well for Casey too.
Then, because September is all about changes, we are also starting the new dance season for Casey. This is a good change though. Casey loves her dance class. Her teacher is actually in Africa (or on her way) with a mission group right now. We are excited to hear all about it when she gets back.
We are starting to get the annual inclusive Halloween stuff rolling again. Be on the lookout for more information coming in the next week or so. We really hope to get some big media support this year to spread the word.