I am not really sure where to start. A lot has happened since our last post (good and bad). We have not been back in the hospital, so that’s good. I guess I will just start where we left off.
The weather has been crazy around here. We have had record highs and lows in the same week, 2 freezes (including a light layer of snow) and I think just about everyone we know has gotten sick at some point over the past 2 months from the weather. Our nurses are pretty good about staying home if they are sick so that they don’t give it to Casey. We usually keep her home more this time of year as well to reduce exposure.
We had a quiet Christmas at home on Christmas day, and then the following Saturday my family came in from here, Houston and Dallas for our family celebration. Casey did okay. She has a hard time when her schedule is changed, but she does love to see all of her cousins. We had to take her to our room later in the afternoon when she started to have a little melt down, but she did well most of the day. She got lots of ponies, arts and crafts, and fairies so she was thrilled.
Since Christmas we have been having some issues with increased seizures and increased GI bleeding. When Casey is sick and/or in pain it seems to trigger more seizures. We think that the pain and discomfort from the bloody belly is triggering the seizures. It’s kind of a nasty cycle though, because when we focus on fixing one thing another gets worse. She loves her shaky vest, and it is great to keep her chronic aspirations from becoming pneumonia (or worse). However, the shaking makes the bleeding worse, then triggers the seizures. The seizure medication causes her to be very lethargic, not wanting to cough and help clear her airway and thus needing additional interventions (such as a shaky vest). We have been talking with her different specialist and trying to find a way to get the bleeding back under control (or ideally stopped) so that we can get her back to her normal routine. We have a palliative team that is working set up a meeting with her neuro, GI, pulmonary and pediatrician so we can all get on the same page. She has been having recurring eye and ear infections for years and skin breakdown as well, so that adds to the complications too. It’s just a very delicate balance to keep her home, happy and healthy
Yesterday was a rough day. In order to have all the information in order to come up with a plan Casey had a full day of tests. We started with blood work, then she had an eye exam (another issue, but one we have to stay on top of), then an EEG and we came home with more tests to do over the next week or so. She is usually pretty wiped after 1 appointment, so all of these after doing 90 minutes of school at home as well, took a toll on her. She is pretty grumpy and tired today. Hopefully with some rest this weekend next week will be better.
There has been some good stuff too. Casey’s dance class started back up. She LOVES her dance class. This week the weather was horrible on her dance day and school was cancelled. I am not sure if dance was cancelled or not, but we opted to not get out on the frozen roads. She did get to go the week before and got measured for this year’s recital. It will be here before we know it.
Casey was able to do water therapy a couple weeks ago. It had been a while since she was able to get up there and get in the pool. She was very happy to be in the water then very angry when we took her out. With the weather being cooler after swimming we put her little cap on to keep her head warm. She looks so cute in hats. She wore it home from her EEG yesterday too. On Casey’s way home from water therapy she ran into her boyfriend in the waiting area. She was thrilled to see him. Of course, because great minds think alike, he was wearing a pretty stylish hat too. We are hopefully going to set up a day to see them soon. She misses her DJ.
We got Casey a pass to the new aquarium for Christmas. Between nurses being out sick, Casey having seizures, and the weather we have not had a chance to go yet. It’s really close to our house. Hopefully we can make it out there in the next week or 2. I think Casey will really like it.
We have been saving for YEARS to get Casey a therapy pool. When we moved this summer we had that on our list of must haves (or the ability to put one in) on our house search. We got our HOA approval this week and will hopefully be starting the dig early February. It will be a very small, shallow therapy pool as opposed to a big entertaining pool. It will be exactly what she needs though. We can not wait to be able to get her in the warm water and loosen up those stiff little arms and legs daily. I really think it is going to make her so much more comfortable and happier.
Tomorrow is February and then it is just a few months before we have an 8 year old. WOW!!! It doesn’t seem possible that she is about to be 8. We are hopeful that 2014 will be her year. With the therapy pool and getting her GI bleed under control we think she will be able to make it so. She is due (over due) for a good year.