It is hard to believe, but it is already half way through August. Wow! Sadly, we kind of missed the entire summer. Between illnesses (all of us), our nursing schedule being out of whack and work travel we really didn’t do much for the summer. We barely even made it to the pool right outside our back door. It’s hard when I have to be up with Casey all night then sleep all day. I feel guilty that she has had to miss so much pool and swing time this summer. Luckily we live in Austin, so we still have a few months that we can use the pool.
We finally found a new night nurse that is doing Wednesday and Thursday nights. That means that we have Monday-Thursday nights covered each week and every other Friday and Saturday night covered. Hopefully the other Friday and Saturday as well as Sundays will be covered again soon. We are making progress. I wish that there were more incentives and benefits to encourage more good nurses to chose home health. We have found some good ones to add to Team Casey, it just took a lot longer than we had hoped. With any luck the rest of the nights will get filled sooner rather than later.
There are a lot of organizations and individuals out there that like to give back to kids like Casey. A while back I put together a list of some of these organizations. I need to update this list. Casey has been lucky to take part in some of these things and most recently she was sent a Feel Better Friend. This organization has volunteers in multiple countries that knit/crotchet dolls to look like the kids that they send them to. Casey’s doll came complete with wild hair and sunglasses (of course she wears pink & purple too). This was a nice surprise for her, especially since she has not had a lot of fun stuff going on lately.
Last weekend Texas Parent to Parent hosted a kickoff party for a new website- Navigate Life Texas. This is the website that will soon have the video that Casey and her friends starred in as well. It’s a really great resource for families and we were so excited to be part of it. We tried to attend the party, but Casey was having a rough day so we didn’t stay long. Hopefully her video will be online in the next week or so. As soon as it is online we will share the link here. I heard from the photographer that has been working on the palliative care photo project as well. She mentioned that the photos may be in a mid-September post on The Lens, the New York Times photo blog. We’ll be sure to share that link when it is published too.
Casey was having a pretty good day today. We managed to get in the pool for a little bit and she got to swing after. She was kind of angry that we made her come back in. I think if it were up to her she would just hang out in the pool and swing all day. There was a little breeze and it was not too hot at all. It was kind of a perfect afternoon to be outside.
We have seen a few doctors recently. Neuro is working with Casey’s physical rehab doctor to come up with dosing for a new medication we are going to try. This is the medication we mentioned a while back that may help with some of Casey’s autonomic issues. We never know if Casey is going to respond, or have a negative response to a new medication, so we always start these very slow and watch very close. I expect we’ll start in the next week or so and should know either way by mid-September if it is going to help or not. We recently saw pulmonary as well. We should be getting a new device this week called a cough assist. Casey had one of these when she was a baby. Her cough has gotten weaker over the past year and we hope that this machine will help her clear some of the thicker stuff that has potential to make her sick. It didn’t make a huge difference when she was little, but it’s worth trying again.
We have a pretty busy week, and Casey has a dentist appointment next week. She actually loves the dentist. Her shark tooth is still hanging on. It was loose and the other one had grown in behind it at our last appointment 6 months ago. We’ll see if she has any ideas or tips on how to get that thing to come out sooner.
That’s about it for now. Stay tuned and we will post links to all of Casey’s upcoming celebrity footage. She is about to start another school year too. Her teacher is the same this year and she does school at home, but it is officially 4th grade! She is getting way too big way too fast!!!! We hope that all of you enjoy the rest of your summers and that all the students out there have a great first day back (whenever it may be).
