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.
Monday, December 15, 2008
After a week in the hospital, Emily came home today. She started doing much better yesterday afternoon, came of oxygen at 5:00, and never had to go back on. She hasn't slept much in 48 hours-2 hours of sleep, so hopefully she'll crash soon. She's been having muscle spasms in her back, and we're sure that laying down all the time did not help. Hopefully her back will feel better. Lily has been in 8 or 9 different homes the past week. She's done great. If you look at her she'll smile and laugh, so everyone who had her was pretty entertained. We are very blessed to have such a laid back, easy baby. She rolled over for the first time on Saturday. Robby got to see it-I was at the hospital. She hasn't done it for me yet. We canceled our first flight to Washington for Wednesday, and have booked a flight on Southwest for Monday the 22nd, coming back on the 1st. So hopefully we'll still be going home for a bit. Thanks for the thoughts and prayers!
Thursday, December 11, 2008
Emily's in the hospital with more lung problems. I got a call on Tuesday from her school saying they'd called 911 because Em wasn't breathing. She recovered on her own-they never had to do anything to get her breathing, but her oxygen never recovered. We're not sure what happened-if it was lungs, a seizure, choking, etc. I got to the school pretty quickly, and she was on oxygen and okay as long as she was on the oxygen. So we rode with sirens blaring to the hospital, where we've been since Tuesday. She's in the PICU at North Central Baptist. She's on bipap, which we've had at home, too, and it helps open her airway. They said she had pockets of lung collapse and pnmonia. Since they started her on the bipap, her chest x-rays have improved. We're not sure when she'll come home, or if we'll be able to go home on Wednesday for Christmas or not. But she is doing much better than 2 days ago. So that's what's going on with us. Lily's been a trooper, being passed around from family to family and person to person. We're hanging in there. Robby's here this time, which makes a big difference! Em's a trooper too. Her seizures have ben much better recently, which is a big blessing.
Saturday, December 6, 2008
We had a fabulous Thanksgiving break with Robby's parents, who came for Lily's baby blessing, which was on Sunday. This was my first year making everything myself, and it actually turned out pretty good. Everything was edible, anyway! Thank goodness for meat thermometers, is all I can say. We all would have ended up with food poisening without one! Let's just say, the turkey wasn't finished when I thought it was. I enjoy cooking, and it was nice to have help in the kitchen. We took family pictures on Saturday, at the Japanese Tea Gardens. There's someplace free to go in San Antonio! I was very excited to visit it-it was pretty and there were flowers. And, did I mention it was free? Saturday night we had fantastic Rudy's BBQ (it's worth coming to Texas just to have Rudy's) and then to a little town that had a Dicken's Christmas. Emily slept through that , and Lily was wide awake. On Sunday we blessed Lily, which was of course a great experience. And Grammy didn't feel like it was right that Lily be the only one with the new dress, so she got Emily a pretty purple one. Sometime we'll get a picture of her in it when she's awake!