It's been awhile since I've posted an update! Since my last post in June, Luella has had THREE seizures - one at the end of July, one at the end of August and another one this past Thursday, the day before her thirteenth birthday! She did have a cold for one of the seizures but the others are all a mystery. This is the FOURTH seizure so far this year.
We decided to increase Luella's meds now; something we haven't done in YEARS! Basically, when she started on diamox just before she turned five, we never increased the dose; even as she grew! She wasn't having seizures and we just decided that it wasn't necessary to change if things were going well. Now is the time. We are hoping a simple adjustment of meds will get us back to that seizure-free state! Meanwhile, it makes me nervous letting her be alone to do things. I feel like I need to constantly check in on her. This is something I've taken for granted up until a year ago when we got to celebrate over 2 years of seizure-freedom. Just another lesson that Dravet syndrome is not constant. We need to change and adapt to what is currently happening. Our prayer is that this will be the worst of what we have to deal with and hopefully things will improve again.
I was so sad to get the call from Ashlyn while I was at work on Thursday that Luella was seizing. The kids had a break from school for a couple days and Ashlyn was home keeping an eye on Luella while Jim and I were at work. I raced home and by then the seizure had stopped but Luella had blood on the front of her shirt from biting her tongue so hard again. Chewing up her tongue has been a common occurance with the last several seizures. It's so hard to see her do that and know we can't do anything about it. It makes for very painful eating and talking for several days afterwards.
The timing of this last seizure was sad since Friday was her 13th birthday. By Friday she was feeling better but just dealing with a sore tongue. We celebrated at home with family on Friday night. Luella really wanted to learn to make macarons so we had a MAC-MAKING date and she learned to make them all on her own. Her flavor choices were salted caramel and strawberry cream cheese! YUM! On Saturday we extended the party! She wanted her birthday theme to be PIXELS and we visited several area arcades to get in as many 80s retro, 8-bit (PIXEL) games as we could... PacMan, Space Invaders, Tetris, Pong, etc... It was a fun weekend of celebrating our new teenager! Hard to believe she is thirteen! Hopefully the medication changes will help and we can once again celebrate a nice LONG seizure-free streak!!
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| Seizure Recovery Nest made by Ashlyn. |
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Luella piping her OWN macarons!
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| FANCY! |
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"Pixel" 13 made by Luella!
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Space Invaders with Ashlyn.
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Gaming with dad and Ryker.
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Four-player PacMan!
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Luella WON!!
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