Home again

Ok we are home again and hopefully for good this time. Cailyn is doing much better. We got her rehydrated and her weight is back up too. She was at 14.9lbs and now back up in the mid-16s.

So we now know the ketogenic diet will not work for Cailyn. We gave it two shots and it just made her terribly sick, she slept and was lethargic and had tons more seizures. So the new course of action is steroids. I'm not exactly thrilled about the idea but we have to get her seizures under control and get rid of the evil Infantile Spasms.

In the meantime her doctor and the super smart, number 2 in the nation, geneticist are working on trying to figure out what is so different with the way Cailyn processes protein that she had such a horrible reaction. She is a mystery.

The cool thing is we get to go back to feeding her solid food as well as bottles so we'll see how she's feeling in a little bit or else we'll start back with that tomorrow. Maybe prunes to help get things moving along again.

So we are all home and will all sleep in our own comfy beds.

We follow up with her neurologist at the end of the week to give him seizure counts. If she's having more than one seizure a day, which is very likely, we'll have to up her steroid dose from 3 to 4 times a day. What I've read is that we can see a real difference in two weeks time.

She finally gets to go back to PT tomorrow after missing two sessions. They were able to get a therapist in to see her once at the hospital but she was so out of it most of the time and sleeping.

We have to start looking for a new babysitter for her so we'll check out the list at the church, craigslist and probably advertise at NOVA. We just need someone to come a few hours a few times a week so we can work and she can have someone play with her and do her exercises, which really is just playing with her and making her do tummy time.

Well that's all for now. I'll post again in a few days with updates. Have a good evening. I'm going to bed early tonight.