We finally have an appointment at UCLA this Wednesday for Jenelle's MRI and MR Spectroscopy. Jenelle will need to be sedated and we're told the procedure will take more than an hour. Once she wakes, she'll need to stay at least 2 hours for observation. Jenelle has done well in the past with anesthesia, but you just never know. We're expecting a long day. Please keep us in your special thoughts that day that all goes well without any complications.
This past weekend was the first scorcher of the season here in Southern California with 90 degree weather and up. Thankfully the kids had 9:00 baseball games on Saturday and we were able to get out of the sun before it got too hot. Unfortunately, Jenelle had a bad seizure weekend, especially on Friday night. She has been doing really well recently in not having a lot of seizures so this was a bit of a bummer. It was very noticeable to her Coaches and Buddies at her game on Saturday. Last weekend she was walking to first base holding her Buddy's hand, and this weekend she couldn't even stand at the tee. Seizures can really wear you out, even the quiet ones she has. I thought to myself that this was just another lesson for our Baseball Buddies I suppose. For a child with special needs, with each step forward we take a step back. That while one week the child can do so much, and the next can be so limited. It's a hard lesson to understand, especially when a normal child never expects set backs like this. And then again, that is why we're in this program. So our typical buddies can learn from our kids.
And on an up note - our kids are growing like weeks! Jack had complained that his baseball shoes were too tight, so I took him to the store this weekend to get measured. Turns out he's grown from a size 2 1/2 to a size 4! I had Jenelle with us, and knew her shoes were getting difficult to put on so I had her measured as well ... size 9 1/2 to size 11! New shoes for everyone! I felt really bad because Jenelle isn't able to tell me when her shoes are too tight! Poor little thing - hopefully it hasn't been that way until recently. And speaking of which, she's almost to the toe of her AFOs, so I better get going on with insurance to request new ones!
That is all for now! Please keep us in your thoughts for Wednesday. I'll keep you posted!
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1 comment:
Oh, fingers and toes and all things growing. Kids keep getting bigger. Glad they are having a good time with baseball.
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