Well, we've officially changed addresses and made a full move to Seizure-land. Rebecca (Becca) turned 6 in January and had already had an "episode" or two. As we have gone down several avenues with our hands out in front of us trying to feel for an answer, we are on seizure meds (Trileptol), getting a g-tube and we're having a sleep study done next week, which I already believe will show serious problems. I have got to figure out a way to get some back-up oxygen in the house for when she has trouble. I was told her oxygen levels have to dip to 80% to have insurance cover extra oxygen at home. I'm sure she's been there, she goes blue for goodness sake!, but no one has been there with an oximeter in their hand when she does it.
We sailed through the first 5 years, we really did. The worst thing we went to the doctor for was a bad cold or a urinary infection. Every year in school we see big improvements in her awareness and initiating communication and just overall happiness. Every little thing makes her so happy! And then these nasty old seizures come along and ruin everything. And after reading and researching on my own, there's no turning back, no miracle cure. It will just slowly get worse and worse, I know that. I don't have to give in to it, but I do have to accept it. Last night she wasn't feeling good, I have no idea why- maybe the various chemicals coursing through her body were making her uncomfortable, but as soon as I went in to her room and talked to her, she smiled! She smiled that "I know you're here Mom and you love me... please make it go away." I can't always make it go away and that is the number one hardest thing for me. Walking through public, myriads of doctor appointments, even procedures don't faze me anymore; it's the look that she gives me- that perfect childlike trust that everything will be better if Mom is there. But I'm not magic, I'm not a miracle worker and I can't reach in and fix things even though I know what could be "fixed."
Most of the time I feel like Becca really gets a lot out of life. Her sisters adore her, she's Daddy's little girl (and Mommy's!), she loves music and being outside- we can tell that she's happy and that she loves us back. The thought of that slowly leaving her just socks me in the stomach, if you know what I mean. Some of you do, all to well. I guess I just keep giving her as much love and joy as I can so that I can fulfill the assignment that God gave me of being her Mom. I suppose I'm a little too old to stomp my feet and pout about it, better just dig in my heels and try to enjoy the ride!
Sometimes I feel like my plane got re-routed to Saturn instead of even Holland!
2 comments:
*HUGS*
When Crew had his grand-mal seizure a few weeks ago the neighbor ran over with her oximeter and his oxygen levels were down to 83%. He was pale and breathing irregularly but he wasn't blue. I would think you could "qualify" for some oxygen. Is there anyway that you could get your hands on an oximeter so you could test her at home?
I'm sorry that you and Becca have to go through this. Hopefully the Trileptol will work.
Diana - keeping your sweet girl in our thoughts. I'm sorry she has to go through this - praying the meds will work and the seizures will end and she will be able to be her happy self for a long, long time!!!!
Hugs!
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