Annie has had a stable, calm 2 weeks or so. I'm blue from holding my breath. No head drop seizures, no throwing up, no insomnia--I'm starting to wonder where they put my kid. The sleeping thing is really nice--I put her down around 8 PM, she lays down, and bam--lights out. Even if I hear her stir in the night, she rolls over and goes back to sleep, and stays asleep until 6 AM when we give her her morning medicine. Then she briefly looks at up at us, and goes back to sleep until 8 AM or so. Thank You, Lord!
Tomorrow we go down to Children's to talk to a dietician about the Ketogenic Diet. Assuming there are no contraindications, (impressive word, huh?), we should start it as soon as they have an opening on the schedule. Remember that the goal of the Ketogenic diet is to control her seizures without medicine, so that we can have an Annie without cognitively dulling side effects. And as I said in a previous post, just lowering her dose of Keppra and Zonegran a little in December has uncovered more smiling and alot more eye contact and awareness.
Meanwhile, the therapists from Rehab Without Walls are working with Annie through the month of January. Beth, the OT, brought a gait-trainer to help Annie practice standing. Something to pray about is for Annie to use her arms and hands more, because if she can use them to hold onto the gait-trainer, she can begin walking by herself. Her aversion to using her arms and hands has been a huge barrier to her physical recovery. Please pray that God heal those connections quickly.
As always, we are so thankful for all your prayers. Please keep persisting--more use of arms/hands, and that this diet work to help her walk, talk, laugh and sing. And again, if God wants to just be done with it and heal her suddenly, I'll take that!
Jean
And behold, a leper came and worshiped Him, saying, “Lord, if You are willing, You can make me clean.” Then Jesus put out His hand and touched him, saying, “I am willing; be cleansed.” Immediately his leprosy was cleansed. Matthew 8:2-3
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