Long Week

Last week was a long one. Casey woke up around 3:30 AM Monday morning with a 102.8 fever. Ugh! I went in and helped her night nurse start pushing Tylenol & Motrin. We were able to get it down to about 100, but we could not get it back to normal.

When her doctor opened @8:30 we called to see about getting Casey an appointment. They were able to see her @11:30. We kept pushing medicine (as often as they are allowed). In addition to a cool rag and a fan she seemed to be a little more comfortable right when we were heading to the doctor.

The doctor ran a few tests (strep & flu) then sent us for chest x-rays. Everything came back negative and clean. The doctor called Monday evening with results and determined it must be viral.

Everyday last week we were up at 3:30. I think we went through an entire bottle of Tylenol. Luckily no more 102.8 fevers. I think we saw a few 101's, but mostly we were 99-100. Finally this weekend Casey seemed to be feeling a little better. Until Saturday she did not want to do anything other than cuddle. Saturday she played a little and stayed awake most of the day. 3:30 came and went Sunday morning without a peep. Casey slept until about 5. That is still early, but so much better than 3:30. This morning she slept until almost 6.

I think this week will be much better. Casey should be able to get back to her routine, and hopefully everyone can get some sleep.

That's about it for now. As always, we hope everyone is well.

Updates

Casey has been doing well. She has been on a princess kick over the past 6 months or so. I think she has decided she IS a princess. It's pretty cute.

There is not much to report. Casey has been keeping busy with her therapies. No recent doctor appointments. We did have to get her AFO's adjusted (again). During this adjustment they mentioned if we have to go back again soon that it may be time to talk about having them remade.

Casey's nurses are all doing well. It is nice to be back on a normal schedule. Her day nurses are taking off during Spring Break, but it is just 1 week.

Casey got a new switch. This one is called a Mercury Switch. We stuck it to a wrist band so it will fit Casey. It doesn't work for all of her toys. For the toys and tools it does work with, it seems to work well. We are still getting used to it.

That's about it for now. We have a meeting with the school in a few weeks. Other than that we are just keeping busy. We hope everyone is doing well.

3 in a Row!!!

Last week Casey had an appointment with her GI. This was the third doctor appointment in a row that went great. Casey is FINALLY back up to 30 pounds (her weight before getting so sick a little over a year ago). The doctor was very pleased with her progress. No changes. I love when appointments go well :)

Casey's nursing situation is going really well. We have finally found a nurse to fill in our 3 open day shifts. The other day nurse ended up picking up Friday nights. With her primary night nurse covering 5 nights that just leaves us with 1 night shift open. We have a great group of nurses doing respite now too. Virtual knock on wood; things are good. Casey seems to really like them all too.

I am starting to plan Casey's birthday. April will be here before I know it. I think this year will be a princess theme (of course). We are still working on some other details.

That's about it for now. The temperature is supposed to drop down into the teens in the next couple of days. We will be staying home and bundled up. We hope all of you are doing well, and keeping warm.