So we upped the study drug again, and so far so good. I don’t want to jinx it, but maybe this is the right dose. It is a prety high dose, no wonder, but so far so good.Lily and I leave on Sunday to head on to SLC. I will take a laptop with me …
I left a little message for the neuro this morning because I am getting totally annoyed. Yes the new med has almost all but cured her drop seizures, that is awesome, but she also is having a huge increase in grand mals. She is up to 3 a day and they last 30-60 seconds and …
Same drug, new study. This study is called open label and the Dr. can rx what she needs. Well finally folks we are getting somewhere! Last week he rx’d her 5mg 2x a day and although there was a small improvement, it certainly wasn’t sing songs of praise worthy. But this past Tuesday he put …
Lily had her last day of school today. I felt sad sending her off. How fast a school year goes. Wow.We will surely miss her teacher.Yesterday we were at the hospital for 5 hours! Darn this study. Ugh. She had an EKG, blood drawl, I had to sit her on the toilet for an hour …
So there is a lot to update, but I really don’t wanna. I am sticking out my tongue with my hands on my hips. I, my friends, am pouting.Looking in Lily’s back pack last week brought me from laughter to tears in about 2.6. First I read Lily’s note in her folder and the note …
I remember driving around with my mom and sister and on the radio is blaring “Just another Manic Monday” and my sister and I are singing our hearts out. I didn’t get it. Sunday was not a fun day, that was church day. Saturday was my fun day. I didn’t realize however just how true …
I am a little annoyed right now about the whole fact of this study. Lily had a seizure this morning before she got on the school bus and it made her tired and spacey. She didn’t have those until we weaned her from the Vigabitrine and I don’t think her being on Topamax only is …
Calm Amongst the Chaos 