I'd like to start out this blog by saying Jordyn has been seizure-free for one whole month! AMAZING! We started her on a new medicine called Depakene. It has a few bad "possible" side-effects to a couple of organs, but we are taking the added precautions to make sure her levels are good and that she's fine. The only discomfort she's been experiencing is teething. Her molars are reeking havoc on her gums and Oragel makes her vomit, so she's not been a happy camper OR a night-sleeper for the last week or so. Her seizure medicines as of today are the new Depakene, the life-long pal Phenobarbitol, and the nasty-tasting puke-inducing Zonegran.
On another note, for those who don't already know, John and I are expecting another kiddo in July! I am a couple of months pregnant now and VERY excited! Of course, we are also very nervous. My OBGYN doc is great and takes my worries seriously. I will be doing a series of tests just to make sure the baby is healthy and fine. Of course, if we had done the same tests with Jordyn, Aicardi Syndrome wouldn't have shown up in a million years due to it's crazy rarity (word?) but this time, we just want to be more prepared. The odds are on my side with this one and I just pray to God every day to bless Jordyn with a happy, healthy little brother or sister to play with and help her flourish.
Although Jordyn is doing well with her seizure-control, I still went ahead and scheduled her for an evaluation in January to see if she'd be a candidate for surgery. It's January 22-24 in Dallas, and the only test they'll be running that I know of is just a 48-hour EEG. She's had tons of these EEG's, but this one will be super-long and the neurologist there will determine if the seizures start and stay in that left-hand side of her brain. If they meander to the right side, than surgery's a No-Go. We'll see.
So, Jordyn's doing great and I'm pregnant! Big news!
I hope this finds everyone well also, and we wish everyone a very safe and happy Holiday season!
Kristen, John, and Jordyn
