That is me screaming! Did you hear it? I’ll do it again! AARRRGGGGGGHHHHHHHHHHHHHH!Sigh…..heavy sigh……………..I’m pissed. I’m so freaking pissed. I am so not in the mood to “put it lightly”. I am so pissed I went against my instincts and went ahead with this damn study. I’m pissed.I thought Lily was going into status on …
Oh my oh my. What a mess we are in. Sigh. I don’t know what happened, but Lily was no longer doing awesome on the combo I put her on. She started having tonic seizures where she just shakes and then screams and cries for a half hour later. Not a good thing. At least …
So Lily and I headed to SLC on Sunday afternoon. We arrived at 7:30pm, got in a cab and got to the hospital after 8pm. We arrived hungry, but the cafeteria was closed. They did have a parent room and I found a yogurt, pudding and milk for Lily. I had a microwavable burrito and …
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 …
So last night I catch Andi putting a bag of Poor Brothers jalapeno chips into the freezer and I ask, “what are you doing?” and she replies “cooling them off, they are too hot!”
Lily started her first day at summer school back at the Foundation for Blind Children.She is in the SHARP program which goes all day (8:30am-3pm) and it sounds like it will be a blast with swimming, bowling, Gymnastics, etc. I am happy she has something fun to do while out of school.Andi is going to …
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 it happens. It happens when I am not expecting it. I really hate when it happens, but I also know that is what makes me “normal”.I get hit by the mack truck of “what if”. Or what “should” be. I try to duck and cover from it, but sometimes, just out of the blue …
Calm Amongst the Chaos 