Our Christmas miracle is...Emily isn't having seizures. They've been doing great for about 3 weeks now. This is a huge deal, because for 4 years she's been having dozens of seizures a day. Since Emily's been out of the hospital this week we've seen huge changes. The biggest is that she's keeping her head up, even when she's sitting up straight or standing. She's just doing fantastic. It's such a huge blessing. She's also staying awake and keeping her eyes wide open, even when she's sitting up or standing. She used to shut down whenever we tried to get her to do these things. We started her on a new diet October 1st-a combination of the Ketogenic diet and a modified Atkins Diet, and after about 6 weeks we started noticing a difference. We're just praying it continues.
8 comments:
It is truly a miracle for a well deserved little girl and family.
It made my day...
PS - She looks so stinking cute in that picture.
Yay! That is great news! I'm so glad you are seeing improvements. I hope your whole family enjoys Christmas this year! Love ya!
That is awesome and so exciting. I love your family picture at the top. You guys are just such a good lookin' bunch. Travel safely to WA and tell the fam hello for us. Well, we'll probably call your mom or something, but just in case we don't talk to her before you do. We'll keep praying that things continue to progress for Em. Have a Merry Christmas!
I am so happy for you guys. I know from personal experience that you appreciate each "baby" step and celebrate them!
I am very glad Em is doing better and hope you had a fantastic Christmas.
Camille, I'm so glad you and Janica found Cicily's blog! I've thought about you and Emily a lot since we both moved from Provo. I remembered talking to you about her chromosome change and how it would affect her life. It's good to hear (and see) how you're all doing. I'm so happy for you and Emily that her seizures are improving so greatly! What a couple of sweet, beautiful girls you have.
I'll be stopping by every once in a while now that I know where to find you! I'd love to email too, if you'd like.
I would also like to hear more about your cousin, does she have TCS or Goldenhar or something else?
Janalyn
janalyn@gmail.com
Hi!
I am a friend of Jared and Alisa Lybbert and they told me about your blog. I have a little girl with a lot of problems...including epilepsy, so they thought I would be interested in reading your story.
Congrats on Emily being seizure free! We know that feeling! Our little girl has been seizure free since October and we have seen miraculous improvements in her development (including vision...she was blind). I am glad that you are having success with the ketogenic diet. We gave that a try at one point, but it didn't work for our little girl. In the end it was a medication called Depakote that got rid of the seizures.
Anyhow, great to 'meet' you. I'll have to check back often :)
great news! glad to hear it. hope you guys are doing well.
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