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 …
When guests showed up they saw signs displaying “Foundure for a Cure”, we added the “” in order to make it look like it was a poetic spin on the words on Fondue and Cure, but the truth is it was a big ol mistake that made us all laugh. And now the joke will …
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 …
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 …
Seizures suck. They really really suck. God, I hate seizures.We went low on clobazam again, my fault. We get it from Canada and every time I call to order it they will call me back the next day on my house phone, I get the message after they close, call back the next day and …
Monday morning I woke up to Andi in our bed, I asked her “did you pee” “yup” she replied. Ugh knowing that I now had to wash her sheets, the same sheet I just had washed the day before because Elmer the Guinea Pig pooped on them. Then I hear Oli whining a groggy whine, …
I posted on FB that I want a vacation and everyone seemed to 2nd, 3rd, 4th etc the idea. I see that I am not alone, when you have spring break for 2 whole weeks and you go nowhere then look on the social media sites and see people sharing vaca pictures it kinda bums …
I got the appointment for the consult with Neuro Surgeon… March 23rd. Gahhhh!I called Neuro and said hey this doesn’t really work with the amount of seizures she is having. They sent an email to see if they could get us in any sooner and asked to put us on cancellation list, but as of …
Yes that is my title and I mean it. Suck it seizures.Last Tues we went gluten free with Lily, not for seizures sake but for overall health and hoping for a little more awareness/alertness (and possibly help with tummy troubles). It is going well, it just costs a few more dollars and she pretty much …
Calm Amongst the Chaos 