Casey’s ENT appointment went well this morning. They did not have to clean her ears this time to see the drum so that was great news. Last time she screamed so much when they cleaned them out. The doctor said that she doesn’t currently have any infections. However, the negative pressure he sees (and has been watching) is getting worse with each visit. He said that it is not an emergency but that he does feel she should get tubes again.
We have had them done twice before and know that she does pretty well with them so we are not to stressed about having them done. The only thing that concerns us is that it requires her to be put under. She doesn’t have to be intubated though so that is always good. We have not had any procedures done in Austin yet so I have not met any of the anesthesiologists. We had some really bad experiences with anesthesia in Los Angeles. We also had some good. Once we found a good anesthesiologists that listened to us and understood how Casey worked we just kept going back to the same one. I hope that we as good or even better anesthesiologists here in Austin. We have been really happy with her doctors, so I am optimistic.
We have been talking with Casey’s neuro about getting Salivary Gland Botox Injections. Many of Casey’s doctors have talked about this and we all think it is at least worth a try. She has had Botox in her legs before to try and help loosen them up. She did not have any reaction (good or bad) to the previous injection. While the doctor is doing her salivary gland, she is also going to try a larger more directed injection into Casey’s legs again. Maybe since it has been a while and she has grown so much we will be able to see some improvement this time.
Being that ear tubes and Botox require anesthesia we have decided to try and get them done together. The less anesthesia the better. We were originally looking at getting her Botox done in April, but in order to coordinate both doctors it may end up getting pushed back a little while. As of right now I do not have a date. As soon as we do I will post more info. As soon as we do I will be sure and schedule a meeting with anesthesia ahead of time to. When we did that for Casey’s foot surgery we felt like things went a little smoother on procedure day.
We finally have Casey’s ARD scheduled. I will be meeting with reps from her school as well as current and future therapists at her home campus on 4/13. We will go over all of Casey’s needs and get a plan in place for her moving forward. I will be sure and post info on how that goes as well. I should hear from her current PT sometime today to schedule his visit to come out and do his assessment.
We are very busy lately. Things are getting done which is good, just long days. As always we hope everyone is doing well.