The first few days after surgery Casey was pretty sore. We had to keep her well medicated (switching between Tylenol & Motrin around the clock). After the 3rd day we were able to start backing off on how often we gave her the pain medicine. Yesterday was the first day she was able to go all day with out needing any. I hate to see her in pain. It just breaks my heart. She did really good though. I am sure if I had been poked that many times for all of her Botox sites, and then a tube in one ear and a mess in the other I would be pretty sore too.
The left ear that had the problems looked pretty bad. We have a little otoscope that we use and the right ear looked so pretty and the tube is placed so nicely. The left ear was swollen and bloody; it just looked awful. We had drops to use in both of her ears. Each day we could see big improvements. Her left ear is still a little pink and swollen. It looks SOOO much better though.
Casey had an EEG on Monday morning. The test came back very well. Each year she has improved on this test. She had a few slow points, but no spikes or anything to cause alarm. Her doctor called and said that it looked really good. Since Casey has been doing fine on her current seizure medication we are not going to rush to get her off of it. For now we will keep her on it on her same dose. As she has gotten bigger the dose has stayed the same. She used to have a fair to large dose for her size, but now the dose is considered pretty small. With everything else that she has had going on I am not in a rush to change things either. So for now we will just stay the course.
Since Casey was so fussy we ended up canceling her water therapy this week. She needed a few extra days at home to just rest. She has a not from her doctor saying she can get back in the pool. The only catch is that she MUST wear a plug in her left ear. We got her some plugs that she seems okay with. She can get back to her therapies next week. I am sure she will be happy to see Margaret.
This week has been nice. Monday Ken (Tim’s brother) was in town for work and was able to come by to visit a little bit. Wednesday my uncle from New Hampshire came into town to stay with my grandparents. He flies into Austin so he was able to visit a bit yesterday before heading to Temple. My grandparents and uncle will be back for lunch tomorrow. Then Friday evening Molly (my baby sister) and her family (Scott & Riley) will be coming over. They are staying and heading back Saturday afternoon. Then Sunday my mom, John, grandparents, uncle and Megan (my other sister) will all come over for a Father’s Day lunch – and of course to see how Casey is doing after her surgery. It is a family filled week for us. Tim has been on vacation this week too, so it has been great that he was able to spend some time with everyone.
Next week some of our friends (Casey’s boyfriend) from California are in town. I am not sure which day yet, but one day next week we will get together with them. I can not wait to see what Casey does when she sees Patricio. She loved when he would come to play in Santa Monica. He has a baby sister now too. I think Casey will be so happy to see them. Tim and I will too, and his parents of course.
We go back on Thursday for Casey’s 2 week follow up with ENT. We will be seeing a lot of them over the next few months. It sounds like we are going to have to go in every month or two to have her left ear checked and cleaned. She SCREAMED last time they cleaned her ear. He said it doesn’t hurt it is just an awkward feeling and loud sound so kids don’t like it. I am going to have to find something she loves to reward her with after those visits.