A few randoms...
First, I'll start with my gratitude for how much support and kind words you all give to our family from near and far. I read every comment, every email, and I appreciate every thought and prayer you send up for us.
Second, I met someone today! It was another mom of a special little girl who is joining Christian's preschool class! Christian is the only child who uses a wheelchair in his classroom but not anymore! He has a buddy now. I spotted her from far away, as I have now gained special needs radar. And, of course, I tracked them down, introduced myself and insisted we be best friends and have play dates as I do with all moms I see with special kids. Not really, but kind of. I did introduce myself. I did track her down. And maybe I suggested a play date, but that's all I'm admitting to.
Third, speaking of school...Christian decided to straighten his arms out, probably because of a startle, which led to him knocking the tray up so that it hit him in the face. Thus, resulting in a bloody lip. First fight at school. With his tray. Awesome. It was probably because he was distracted by the new girl.
Fourth, and this one is the biggie, this time next week we will be admitted to UMC for Christian's first inpatient stay since coming home from the hospital. We've been lucky enough to avoid any type of hospital stay for anything. This is a first. Why are we planning a stay at UMC? Well, ever since the introduction of Ambien, unfortunately we've witnessed a new seizure. I've been pretty lax about the seizure situation for a while, deciding that the VNS implant was giving us enough control and his daily spasms were not troublesome. Then we decided to introduce Ambien. And quickly after we noticed some harder, longer seizures that looked different than anything we had seen before. They didn't go away after we stopped the Ambien.
Now they are a daily occurrence. They happen several times a day. He jerks his arms out with force (which may have been what contributed to his bloody lip today), turns to his side and starts breathing really fast. It lasts from 5-10 seconds. I've used the magnet to swipe over his VNS in order to stop the seizure and it works in shortening them but it doesn't prevent the next one from happening. The thing that scares me the most is the breathing. I don't mess around with that. So it's time to take action.
Because this is a new kind of seizure, his new neurologist wants to monitor him for three to five days inpatient. So that means we have to be admitted to the hospital. I really don't think we'll be staying even three days because Christian will give them enough date in a day's time. Needless to say, I'm hoping for a less than 48 hour stay. I'm glad this monitoring is happening because we haven't done an EEG for over a year and this will be an opportunity for the new doctor to look at an up to date EEG and figure out a plan of action. I'm hoping he won't give me a laundry list of medications to start him on.
I'm trying to think positive. Fresh eyes, fresh prospective. I really just want back the Christian I had before we decided to try Ambien. Live and learn.
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