Emily is doing better the last couple of days. She has been acting more like herself. Smiling and laughing a little bit more. She has been more vocal too. She still seems a bit more irritable than usual. She will cry and we have no idea why, but the crying fits are not lasting an hour or longer, so that is good. It could just be teething or plain old two year old crankiness.
The thing that scared me the most about Emily's seizures is that they looked like infantile spasms. That terrified me! Now every movement, every cry, every odd thing she does makes me wonder. Is she having a seizure? If so, what are these seizures doing to her brain? This afternoon, she woke up from her nap crying. I ran in there expecting to see a seizure, but I think she was just hot. When I took off the blankets and talked to her a little, she calmed pretty easily. She did seem to have a little bit of seizure activity this afternoon when her OT arrived (before her therapy even started). Just a few little odd movements that just lasted a few seconds. She had a pretty mellow therapy session today - some stretches, massage and playing with textures a little bit.
She will not be going to OT tomorrow. Before they will allow her to return to therapy, we need an OK from the doctor. We may just wait until we see the neurologist - we haven't really decided yet. Her PT through First Steps will call her pediatrician for an OK to continue with her therapy. And we will go to her horse therapy appointment next week, but she will not ride a horse, she will just have a regular PT appointment. They will not feel comfortable putting her on a horse again until we talk to the neurologist. I tend to agree.
We called our pediatrician to get a referral to Cincinnati Children's. They sent some info yesterday and I was able to call today for an appointment. The earliest available is Dec 10. I was hoping for something sooner, but I took what I could get. Our theory at this point is we will go to our neurology group on Nov 6 and if we don't feel like we are getting the answers we need, then we will head to Cincinnati in Dec. If we feel like we are getting somewhere with our group, then we can always cancel the appointment in Cincinnati.
At this point, I am completely drained. I have been thinking and thinking this through until my brain cannot think anymore. I have been doing some research, but have tried to keep that to a minimum - have you read some of the crazy stuff they put on the internet? The bottom line is that I don't have the answers. We need to see the neurologist. Emily needs to get an EEG so we can see what is going on in her brain. Until those things happen, we are just going to have to wait. Waiting can be really hard sometimes...