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 …
Lily had a neuro apt. on Monday and we upped the study drug and Keppra b/c she had been having anywhere from 3 to 4 grand mals a day and I was so frustrated when I came in.So far this combo is keeping her just having one a day, but it is totally unpredictable and …
August 28th 2002 Welcome to the world Princess LilyAnna Blu! Only after 29 hours of labor your beautiful little self came into the world, pink and crying. We had no idea what you had in store for us. Only a few weeks later we found ourselves back into the hospital doing test on my baby …
I was going to post about how frustrated I was with Lily’s awful seizure filled weekend, but then last night this happened and I’d rather share this.Andi asked if Lily could lay in her bed with her. We were in a sticky situation, we are dying for Andi to want to “play” with Lily, but …
Happy Birthday my sweet LilyAnna Blu! I love you!August 28th 2002 my girl came into this world and 6 years later I just can’t believe all we have gone through.I love you more than you could ever imagine and rocking you to sleep in the rocking chair last night had to be my highlight of …
Yesterdays post was written after being woken up at 4:50am and unable to go back to sleep. Then followed by an AM fight with Andi and taking Lily to 3 therapies by 11am. Then 2 seizures within hours apart, I was a little upset. She ended up having 3 seizures total yesterday which is upsetting, …
Calm Amongst the Chaos 