After our last post Casey was starting to get a little better, but then seemed to take a few steps back. It took us a long time to get her off of oxygen and to a point where her lungs started to sound better. Sadly she had to miss a lot of school, dance, and pretty much everything over the past 3 weeks. As of last week the pneumonia seems to be much better. We are still dealing with cdiff and some terribly tummy stuff, but her lungs do sound much better (FINALLY).
The cdiff has been on and off since late June. We have heard stories of people going years to get rid of it. We can’t really sit and wait on this. With Casey always just barely hydrated, each recurrence of cdiff takes more and more fluids that she just can’t spare. This last run of cdiff caused her a lot of pain as well. After talking with Casey’s pediatrician and palliative doctor we are going to take Casey to see Infectious Disease this week. Hopefully they can help us come up with a way to be rid of cdiff for good this time.
We are going to try to get back onto a normal schedule this week. Casey has school, and dance. She has barley done any school so far this year (I think only 2 days). I guess this is just one of the many reasons we opted for homebound school for her.
Casey loves to swing. When we go to the park that is always what she wants to do, she loves to swing at the PT gym at the hospital, really an chance she gets she loves to swing. We have been wanting to get her her very own swing for some time now. Our old house didn’t have a place where we could hang one, but one of the things we looked for in our current house was a place for a swing. She uses what is called a platform swing. It basically lets her lay down while swinging. There are a lot of therapeutic benefits to swinging as well enjoyment. Casey’s Ortho, his nurse and Casey’s PT have been trying to help us get a swing for Casey all year. It finally came in and Tim was able to get it installed. I think it’s safe to say she likes it. Between the swing and the pool Casey is becoming quite the outdoorsy kid 🙂
Some friends of ours have done something really special for Casey. Their little girls are some of Casey’s friends and are all doing girl scouts this year. They knew that I was not interested in signing Casey up if she was going to get stuck in a group of girls she may/may not know. Instead our friends decided to go through all of the training, background checks, etc in order to start their own group. This way Casey will be with girls that she already knows. This is HUGE!!!! Knowing that the girls are all good around Casey, knowing the environment is one Casey does well in, and it only being a few times a month makes Girl Scouts something Casey CAN do. Our friends doing this so that Casey can participate means so much to us. Casey is very excited! This week will be their first troop meeting. I am not sure if her troop will be selling cookies or not, but if so, she will be hitting you all up soon 🙂
I will post soon with more details on the ID appointment, how Casey likes Girl Scouts, and more. Until then we hope everyone is doing well.