To be honest, I am not even sure where to start in order to catch up. I will start with now and I will try to be better...Summer 2014 and doctor's appointments.
On the other hand...we weaned her off of Topamax because we didn't notice many seizures in the last year. I may have been wrong. What I have been noticing though was happening before we weaned her so I don't think weaning her had any effect on seizure activity. Last school year, I would randomly get a call from her teacher or the bus driver telling me to come get Asia she has thrown up. Bummer she was sick but ok and I would go get her. The same thing would happen at home here and there, she would throw up but I was confused at what was wrong because she didn't seem sick, she wanted to eat right away and no one else would be sick in the family. It wasn't until a few weeks ago I noticed her eyes looked weird. Kind of half closed sometimes, looked like she may have a headache but then they would go cross-eyed or one would drift out to the side. She would start acting a little strange, even put her hands to her head or face and guess what, she would throw up! Have I been missing the seizures?? Migraines? Seems impossible when I have seen so many and so many types but nonetheless we have a EEG next week and a Neurology appointment.
The EEG is only the hour long one, which we never seem to see anything in the hour EEG-really it should be overnight but we will give it a try. If she is having seizures it only gives me a push to start her on Charlotte's Web-because as of July 1st it is legal you know:) I also hope this will replace her Depakote as well.
The poor girl has to get ear tubes again. Her third set and I thought by age 8 she would be over them. She has not been passing her hearing tests on the left side which is her good ear. We suspect there has been fluid in her ear since at least February-could have been longer? Hey, maybe this will help with speech too?
My summer has unexpectedly filled up with doctors appointments. I guess I may as well do it before school starts right?
I am also going to mention this-because I didn't know and it could have saved me thousands of dollars over the years. Right now Asia is on Disability Medcaid. Someone mentioned she may be able to get diapers covered under insurance and guess what? I just got my first months supply delivered-I am a little shocked. I really had no idea. She has out grown diapers so they are a pull-up but that helps out a lot!
Aside from the medical, she is finally starting to tolerate the pool, Yay!!! She doesn't mind getting in for a little bit-she has every year past.