We saw a different neuro last week. I met Dr. N when I went into TGen and had a meeting in a conference room with a table longer than my house. I met 4 researchers who were interested in CDKL5. I don’t know how we are moving forward, but I was thrilled to speak with these guys and just …
There is never enough hours in a day nor money in the account, right? It sure seems this way. But I know we are blessed. So blessed. I have so much I want to share and write about, but my time is short. We are almost done moving. A few things left in the old place we …
Ever see Stand by Me? You have to have seen Stand by Me! I love that movie. Just recently it was on Nick at Night and we watched it with Andi Jane. She loved it too. How could she not. Such a great movie! But as I watched it I paid attention to things I …
We had a very encouraging neuro appointment last week. I really love this new neuro, she is so cool and really cares about Lily.We decided to take her off the diet. She said her main goal is to give Lily the best quality of life and if foods are what she enjoys and the diet …
Seizures are the devil. I hate them. Lily is on 4 anti seizure meds. 4. Have you ever read the labels on anti seizure meds? Ever listen to a commercial talking about a medication for foot fungus and hear the side effects and figure you’d rather just have foot fungus? Yeah it’s like that. We’re …
“Too broad” my friend Codi says to me on New Years Eve as I tell her my resolution. But it was way too late into the night to really have any sort of meaningful conversation with me, I am sure at the time I thought it was meaningful, but by the next day it was …
Lily’s having a big seizure each day. The new med is making her so tired and I’m thinking it may not be worth it. I really hate trying to figure meds out. They make her tired and she is still having seizures. I would love to take her off everything, hospitalize her, and start from …
My goodness I haven’t posted much lately. I need to, I should have. Should I tell you about my lack of time, or do you really care? Excuses, like butt holes, we all have them and they all stink.We went to neuro last week and besides being called his platinum VIP patients, it was a …
We are on day 3 of fall break. Both our girls are on a modified year round schedule, they go for 9 weeks and take two off all year long until the 6 week summer break.The first day we went to the park. The second day we went to the zoo. The third day we …
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 …
Calm Amongst the Chaos 