Casey has been keeping us pretty busy lately. Between her school therapies starting back up and her usual therapies at Dell we have also been dealing with her wound, ear infection and possible seizures. There has been a lot of appointments over the past few weeks.
Casey’s wound is FINALLY starting to heal. Last week we took her in and the medication she had been using got rid of the remaining bad tissue. They changed her to a new medication that promotes quicker healing. Over the weekend I already saw a big improvement. She went in yesterday for this weeks appointment and everyone was very pleased with the latest progress. I hope to finally get this healed soon. It has been an issue since the end of June. That is too long for a wound.
We had Casey on ear drops for 10 days following her ENT appointment on the 24th. A couple of days after the drops her ear was no longer draining at all. We took her in for a follow-up yesterday and the infection is all cleared up. They did have to clean out her ears (she hates that part). She got a sticker and fell asleep on the way home.
Casey had her yearly EEG done back in May. There was a lot of activity and Casey was doing this weird twitching. The doctor changed her seizure medications and the twitching is under control now. However, now Casey is doing this weird thing where she tucks her head and stresses her entire upper body. I think it is pain from teething, or possibly her trying to clear drool in her swollen pallet. It is possible that it is a seizure though. To be safe we have talked with her doctor about it. Unlike the twitches there is no pattern to this so we can not predict it and catch it on video. Instead the doctor ordered a home EEG to run over 24-36 hours. We do not have that scheduled yet but they expect it to occur before October. If that test does not capture the head tuck then the next step would be an overnight stay in the EEG lab at the hospital. We hope the home test is enough.
Casey has been adjusting to her school schedule. The therapists all start coming out last week. It makes for a busy week. I am supposed to check out the schools they mentioned in her ARD on Friday over lunch. Hopefully Tim will be able to go with me. We will see.
Casey was invited to a Make-A-Wish “60 Days, 60 Wishes” wrap party on Friday evening. That should be fun. She will get to see her new friends from MAW, US Money Reserve and KVUE. Later this month she gets to go to a PICU reunion party too. Casey loves a good party.
That’s about it for now. We will post more after we get some details on school and what we want/plan to do moving forward. As always, we hope everyone is doing well.