Well...

School starts here on Friday and Riley is getting excited. I am trying to stay positive and not start dreading it all. Rileys seizures are still daily, once in a while she gets a day or two break between them. Nothing has helped, at the last visit with Dr. Parrott in July he changed her VNS settings to stay on 21 seconds, off 1.1 minutes and he increased her Topamax to 350mg a day. Initially it seemed to help, she was given a few seizure free days after going nearly 3 months with daily seizures.

She has had a remarkable regression everything she learned last year is gone. As you may remember my big goal last year was just for her to write her name, and she was doing "hehe" or "hetehe" at the start of the year before she finally got it in March but then after her seizures started to get nasty and became daily her name become "H" followed by an unpredicatable string of letters.

Behavior is sending me over the edge. There is no rhyme or reason to it at all. Sometimes it appears to be total frustration than sparks it, others it is just out of the blue, and others I am almost 100% certain it is seizurey stuff.


The gluten free diet is still going. I have considered tossing many times but each time something or some one puts me back on track. We have changed everything about what we buy and where we buy it. I have to say that as a whole we are eating much healthier, I have lost 15 lbs in the last month and a half which is a good thing. Sarah is less moody and anything that contributes to that with her will stick around as habit here.

Rileys wheelchair broke a couple of months ago and we are still waiting for the replacement killing my back waiting. Her braces are again an issue, but that is nothing new. We are waiting for her new ones to come in. We did finally find someone that casts and sends them to Cascade so hopefully we will have it right the first time. She has none right now so at the end of the day her feet, legs and knees are hurting her (and I am sure that pain is part of the behavior breakdown too)

The other girls are doing great. Sarah is anxious about middle school and that has been reflected in her behavior and sensory processing. We have visited her new school every day for the last two weeks so she is getting a better grip on the change. Brittany has not had a migraine in a long time, she still is having those frequest deja vue episodes but is not bothered by it and Dr. P was not concerned at this point. Victoria starts high school, this year.. I can't believe my baby girl is going to high school... My niece and nephew are still spending more time here that at home, which is fine. At least I know they are being taken care of. Riley and Jacob are an awesome duo she loves to play with her jacob.

I am sure there is tons more that has been going on but for now I better run, Riley need more attention than ever..