I've been a little MIA lately, but hopefully will be blogging on a regular basis soon ;)
Ayva is doing well on the Ketogenic Diet. She is more alert and happy. You can just see in her eyes she is more "in there", you know? Like the light is on and someone is home. At least sometimes. She has a follow up EEG on April 16th. It will be the first one since she started the diet in February. We're keeping our fingers crossed.
We did have an appointment w/ Dr. A a couple of weeks ago and he asked how she was doing. I told him more alert but also her reflux is better. He said, "Hmmmm." and I said "What?". Dr. A said that usually the diet makes reflux WORSE because of the high fat/ low carb and sugar ratio. BUT when children's seizures either get better or go away, their reflux tends to go away from no seizures.... we are hoping that's the case!
He said that if she isn't having hypsarrythmia on the 16th, then we can start weaning her off the Depakote.
I spoke to him about Anna as well. He said that Topamax (which is what she's on) can have some side effects like poor balance, trouble w/ memory and speech. So on the 16th, he will give Anna a new prescription for another medicine that has no side effects! He doesn't want to take her off meds completely just yet because of Ayva's problems, but a change could be really good for her! I can't wait to see if it helps in any way!
All the kids like school. Justin only cries for a few minutes when I leave now, so that's a plus! We are getting a little antsy about the weather starting to be nice!
OH YEAH! We will be walking in the
Trolley Run on April 25th, 2010. It is to support the kiddos school CCVI (or Children's Center for the Visually Impaired). If you'd like to join our team and walk with us, just email me! OR if you'd just like to donate you can click
here.
I will leave you all with some new pics of the kiddos!
