Better and Better

Rayleigh is doing terrific!!! I don't know what else to say about it!

She is 9 weeks seizure-free!!!

9 weeks in a row of no seizures! It's still unbelievable to Michael and me. She went from at least one seizure every single day to 9 weeks straight seizure-free!

I'm not going to lie, it's not like she's going through some overnight change and suddenly she's sitting, talking and all that. She's still behind developmentally but without the seizures making it worse she stands a really good chance of catching up. Now every physical therapy session sticks with her and she's making small improvements every day! The major thing we've been noticing this week is her vision improvement. She looks for me in a room and she has been making really good eye contact with those she knows!

We've been incorporating deli meats into the diet through the last week or so. She's eating it really well so I'll need to get in the Ketocalculator and create some more meats using various deli meats and carbs.

Last week, on Michael's birthday, we lowered her Trileptal by another half of a pill.

She went from:
1 pill of Clobazam 3x a day and
1 pill of Trilpetal morning and night, half pill Trileptal in afternoon

to:
1 pill of Clobazam 3x a day and
half pill Trileptal morning, full pill Trileptal at night

She's so much more awake and alert now that she's down in dose by 1 full Trileptal pill. And the best part is that she is still seizure free even after the 2 small reductions in Trileptal!! I hope for her sake that we can make it all the way to NO Trileptal and stay seizure free!

***********************************

A quick side-note story:
Rayleigh was prescribed Clobazam by Dr. Hernandez at Cook Children's Hospital one year ago. It was not FDA approved so we had to fill our prescription at a Canadian pharmacy and have it shipped to us. We had to pay full price for the medicine and about $6-$10 shipping depending on how many months worth of pills we bought at a time.

Well, Clobazam has now been FDA approved!!! We are very excited about this because now we can get it locally and it will be covered by insurance and more doctors will be able to prescribe it for their patients.

On the down-side, immediately after being FDA approved it is illegal to purchase it out of country. This wouldn't normally be a problem EXCEPT it's not yet available in the USA. They expect it to be available in a few months. This is a major issue because Rayleigh only has a month and a half left worth of pills now at the house. We called her neurologist last week and he is going to push through a prescription and contact the FDA at customs to get it to us when we need it. Hopefully this works or I have no idea what we'll be doing! We're working with her neuro on a plan B...

Overdue Update

Well, I thought I'd take a few minutes out of my day to do a quick update on Rayleigh Bug and her diet.

She is 7 weeks seizure free!!

It's so wonderful! I can't help but constantly smile!

Her development is still pretty much the same but she is making improvements. Her neck strength is probably the biggest thing we've noticed in the last couple of weeks. She can also sit for 10-15 seconds independently and sometimes tries to catch herself when she starts falling. We've also noticed that when she's doing tummy time that sometimes she will scoot her bottom up under her like she's starting to get in the crawling position.

She also had an eye appointment with Dr. Mike Siatowski. He's a local neuro-opthomologist and Rayleigh first saw him 6 months ago and he prescribed her glasses and diagnosed her with Cortical Visual Impairment. Basically it means that her eye development is moving much slower than that of a normal child but will improve and work at it over time. So last week Dr. Mike said that she is on a good timeline and he sees minor improvements. He said she's doing well and he expects her to have full vision recovery between 4-6 years. She's goes back in 6 months to do a full examination and dilate her eyes to check her prescription. Oh, and he said that the seizure control could speed up the timeline but it still won't make it an overnight change.

She's doing really well! This week our big challenge is to get her back on routine. She's going back to taking 2 naps a day - 1 after PT and a longer nap in the afternoon. I think that's part of the reason that she doesn't go to bed until 10:30p or later!