Our blog is down right now, so I know this won’t be read for at least another week. There has been a lot going on lately so I wanted to blog while things are fresh on my mind.
Overall Casey has been having less seizures, or crunches. However, when she does have them they seem to be getting more severe. She will crunch and twitch, then after 10-20 seconds she will come out of it and cry really hard. We can’t tell if she is hurt or scared. The days she has 1 she usually has 3-10. After a couple she starts to get really upset. When we go through the questions of what is bothering her she lets us know that she has a bad headache. These headaches usually last about 2 hours. During the 2 hours she wants it silent. She can not stand any noise at all.
We have been trying to catch the twitch on video but have not had any luck. Tim is looking into getting a new camera that we can prop up in front of her and just let it record for a while to capture the seizure. We have also contacted her doctor about the headaches. Hopefully they will get back to us today with something stronger than Tylenol to treat it.
The reason we have taken the blog down is related to a lawsuit. Over the past few months we have been trying to work with Casey’s school in order to get her more appropriate services. After hitting a brick wall we ended up hiring an attorney. Right now we are in the middle of trying to reach an agreement. We hope that no one would, but just in case, we took the blog down so it could not be “misinterpreted” and used against us. We hope to have some sort of resolution in the very near future. As soon as we do we will reopen the blog.
Last week Casey started speech therapy up at Dell. She never likes therapists on the first day. The speech therapist was no different. Because of scheduling issues she will not be able to go back until after Thanksgiving. Hopefully her next session will go better.
This week Casey will start her cranio/massage sessions at home. I am excited to see how she responds. I know she loved this back in LA. I guess it will all just depend on the therapist.
We got some bad news yesterday. Casey’s nurse (whom we all love) has been offered a job that she can’t refuse. The job is very exciting for her. I know if I were in her shoes I would have made the same choice. As much as we want to be happy for her, I am a bit stressed about going through the nurse selection/training process again. At least this time around we have night nurses. That makes a HUGE difference. I hope that we find a good fit soon.
The good news is, Casey’s nurse that is leaving lives just blocks away. We still have someone close by for emergencies. Also, she wants, at a minimum, to still do weekly respite for Casey. We will figure it all out. It may be a stressful few weeks/months, but we’ll survive. As long as Casey still gets to see her BFF every now and then she should be okay.
Hopefully we will get the legal stuff all worked out soon. When we do, the blog will be back online. Until then, I guess I am just writing for myself 🙂