I just wanted to quickly update from Lily’s ENT appointment. He was very nice, on time and cute with Oliver as well as spoke to Lily not just me. Those are all major pluses when dealing with a Dr. He looked at her sleep study and said she had 10 apnea spells and hour and …
So Monday was our last appointment. Sigh. It was a long one. Thank God my mom went to hang out with us. It was a long one. I first spent 2 hours getting pee from Lily Sunday night. 2 hours! I was an hour late to a family dinner at my sisters waiting for that …
My girl is still doing great! We have to go in on Monday for a “final” appointment for the study. 🙂It is a long one though, EKG, Blood work and I have to bring in a dang urine sample. Don’t get me started on those. Looks like we’ll be on the potty for an hour …
So Lily is on modified year round school schedule. That means for every nine weeks they have 2 weeks off. Only two weeks is more like two and a half weeks plus two half days. Which in more clearer terms, really hard for someone who tries to work a few days a week. Since I …
Changes are in the air. Is it because it has been awhile in the waiting? No that can’t be it. Is it fall? Who knows.I still haven’t gotten a plan for Lily’s wean and add of the Vigibitrine so I put a call in the AM and it was much cheerier than my last, lets …
After Lily having two to three grand mals this weekend (each day) after we upped her meds so much that she can barely stay awake. I called her neuro Monday AM and had to leave a message, Andrew said it was mean, but I didn’t think so.I got a call back with an apology and …
So bright and early this morning I met with Lily’s teacher, the counselor, her OT and ST for Lily’s IEP. It went as well as to be expected. Everyone is so nice and although I hear horror stories, I have yet to run into any. A lot was copied over from last year and it …
Sunday Lily had 5 for sure seizures and we think maybe one more because of the way she passed out on us out of the clear blue sky. So probably 6 big seizures that knocked her out. Coincidentally I upped the study drug that AM. I lowered it back on Monday and called the Dr. …
I never put Lily back on V. I lowered the Keppra to slowly wean, I wasn’t cool with the whole “just take her off”, and I lowered her study drug. Well I guess she did pretty well when I was away this weekend, but Andrew “accidentally” gave her a full dose of Keppra the whole …
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 …
Calm Amongst the Chaos 