Last week was one of the busiest for us. Casey got Phenol injections in both legs last Monday. The doctor said we would see results right away. Sadly I don’t think it did anything at all. We may talk with Casey’s neuro about trying Botox in her elbows since it worked in her hands. I just don’t know if we will ever find anything that works on her legs.
Then last Tuesday Casey got a hair cut in the morning. It is very cute. We just took a little off the bottom, it’s not chopped or anything. Then she got wired up for an ambulatory EEG. It took a long time to get the 25 electrodes placed. Instead of just a little puddy to hold them in place they had to use some serious glue. This stuff was like concrete. After they placed the nodes they wrapped her head. Those nodes were not coming off. We decorated it for her when we got home. We said it was her princess crown. There was a box attached to the wires. For 48 hours we had to push a button and keep a log for every event (diapers, repositioning, deep suctioning, medicine, etc). It was a long 48 hours. Casey did do a bunch of the crunches they were looking for – which was good.
On Wednesday (still with EEG on head) Casey met a new doctor. We have been taking Casey to the wound clinic for her ear since July. We asked them about prevention for future break down and they referred us to Dr. Smith. On Wednesday we got to spend a little time with her. I really liked her. She had a few ideas for Casey’s ear (she is following up with the wound clinic) then talked to us about prevention. She also gave us some stretches to do with Casey to help prevent her barrel chest from getting worse. She suggested cranio at one point. I was happy to tell her I was already working on that. She is going to talk with the wound clinic and some other people and get back to us on some ideas for Casey.
Last Thursday Casey had PT, then had wound clinic then we went to get the EEG removed. The EEG techs were running behind. Casey was ready to get the stuff off, as were the rest of us. Casey’s nurse decided she was going to just help Casey out in the waiting room. I chipped in and we had all the electrodes off before the techs came back for us. They had a solution they used to get some of the glue out, then we took Casey home for a serious hair washing. I was still picking out glue all last weekend.
Last Friday Casey had her 6 month follow-up with Palliative Care. We had not been in to see them since January. There was a lot of updates for them. Overall the appointment went very well. I like seeing them as outpatients. Then on Friday afternoon Casey had Music therapy.
This week has been nice and quiet. Casey has had her therapies, but no doctor appointments. It feels as though we have been going nonstop for months now. We have a couple quiet weeks in which I plan to catch up on paper work, get some rest, maybe even work out 🙂
We did have to talk to a few doctors this week. Casey’s neuro called to tell us that the tests were inconclusive. We need to try and catch Casey doing her crunch on video so the doctor can get a better idea of what’s going on.
We also had to talk with pulmonary this week. Casey’s voice was really hoarse. We noticed on Monday and it wasn’t getting any better. We were racking our brains to figure out what was going on – allergies, strain, a cold. Nothing seemed to fit. Finally we figured it out. A medication Casey takes every other 28 days started on Friday. One of it’s side affects is a hoarse voice. Online it said it was a less severe affect, but to call your doctor. He said not to worry, it is a known side affect and to just keep giving Casey the medication. The medicine is to help fight infection in her lungs. I would assume if we called with this in July he would have told us to stop. However, this is a pretty important medication during flu season.
I think that is about it. As always, we hope everyone is well.