Jordyn is not only seizure-free, but she is free from the constant discomfort she has had to endure the past couple of months. First, she had really bad acid reflux so I did some Google-ing and diagnosed her with GERD and Asophogitis. A trip to the GI doctor confirmed this, so we started her on Pepcid. After that, she started doing her squirming-moaning-something's-wrong movements and after a few phonecalls to the pharmacy and drug reps, I found out that the main inactive ingredient in her Pepcid is Citric Acid. Jordyn has a major intolerance to Citric Acid, even a mililiter of it. So after switching to the pill form of Pepcid, she is feeling better.
We also started her on a low dose of Miralax to ease her constipation. Most Aicardi girls have bad constipation, so this will put her at ease. That's all I want- for Jordyn to be comfortable.
Now that she is happy, she is smiling more! She is in my lap smiling up at me right now even. :)
Joslyn has really brought Jordyn out of her shell. Jordyn is more vocal, she focuses on people more, and she even started crying the other day. She hasn't cried for over a year (except for the dentist visit when she bit down on her lip). At first I was terrified that something was really hurting her, but I sat next to her and she fell asleep as if that's all she wanted was that extra bit of attention. Joslyn must have taught her that. :) She hasn't done it but that one day, so I don't know if it will continue but I hope it does so I will finally get a clue from her that she wants or needs something. It's tough sometimes to try to figure it out on my own without any help, so I don't mind at all if she becomes a cryer! :)
We all had a great holiday break. Now that everyone's back to work I hope that I will hear an update on that new indoor seat I ordered for Jordyn. She really needs that extra back and neck support as she gets older and Taller.
John bought me a huge Ford Expedition so it's much easier to transport the wheelchair and double stroller and all of the girl's "luggage". Us gals have a lot to lug when we leave the house!
I will be looking into special pre-school programs for Jordyn soon, so wish me luck! She "starts school" in June. I've got a lot of work in front of me, trying to find the right one for her and figuring out how we're going to be able to "let go". EEK.
Happy New Year! God Bless!
Kristen, John, Jordyn, and Joslyn
