Stuff

Well, the Mini was not the answer we were looking for. It was IMPOSSIBLE to use and the leakage was as bad (maybe worse). We went back to the Mic-key a few days after trying the Mini. I am waiting to hear back from the surgeon’s office to see what they want us to try next. I was really hoping it was going to fix things. Oh well 🙁

Casey had just gotten over the fussy phase of recovery from her surgery when we switched her to the Mini. As soon as we switched she got all upset again. Nothing seemed to help. I think the way the Mini fit may have actually been uncomfortable for her. After we switched back she has been much happier.

So far we are waiting/watching for Botox results. Her hands are much looser, and less sweaty. We have not seen much in her legs at all. It is hard to say if the salivary glands have been changed or not. She has been so fussy off and on since we got home. When she is upset it makes them really bad. When she has been happy I think they are a little drier. Her nurse said her chest sounds drier too. The doctor did say she may have to go through a few rounds before the dose is enough to really see. Ugh!!! Medicine is supposed to be black and white. I hate the trial and error approach. It is better than doing nothing at all, but still.

Casey had her 2 week post-op with ENT this morning. The right ear looks great. He did clean out her left. We have to go back in 2 months to have it cleaned out again. She HATES to have them cleaned out. They use a little vacuum device to do it. I am sure I would hate it too. After 2 months we will decide if 2 months is enough/too much time between visits. Depending on how much he has to clean out on the next visit will determine if she will have to come in more frequently or not. We are doing everything we can to help keep it clean and dry. As much as she hates to get them vacuumed out, and as much as I hate taking her in for that, it does beat having to have a big reconstructive surgery. The longer we can put that off the better.

Casey’s boyfriend is coming over tomorrow morning. We have not seen them since we left California. I am sure she is going to be excited. I will get some pics and try to post them over the weekend. As always, we hope everyone is doing well.

This entry was posted in Casey.