Tuesday, February 16, 2010

The Race Continues

Our girl is not doing so great. The past few days, almost every time she wakes up for the majority of time she's awake, she's having seizures. I've debated about whether or not to record her having a seizure so you all can understand exactly what that means, but I think not. Her head flails, her face gets screwed up and her eyes, mouth and tongue twitch, one or both of her legs either pull up or kick straight out. And then, if it's a bad one, she'll scream and scream while she seizes.

In addition to her regular medications, we've also been giving her Atavan, which is a muscle relaxer that hospitals give to kids who have seizures like Lydia's. We're not on a regular regimen with it. We've had it since we first brought her home from the hospital but we haven't had to use it until a couple weeks ago. Then, we gave it to her once and she was fine for several days. Last week, we moved up to giving it to her almost every day and yesterday we had to give it to her twice.

It feels like she's getting worse faster than we can do anything to help her, like we're starting to lose this race. We always knew this was part of the deal, but we've really done OK controlling the seizures up until a couple weeks ago. We want to keep racing against the seizures with meds, and we're speaking to the neurologist today to try to figure out how to adjust her meds, if we can at all.

She's a fighter to rival any I've ever seen, but I just wonder how much longer her little body can stand all it's going through.

I'm sad. I don't know what to even ask you to pray for, but please just pray for our girl. He knows what we need.

But, on the plus side, she's still intensely cute.





8 comments:

  1. I have never seen so many cute clothes for one little girl! How fun it must be to dress her up and soak in the cuteness. I will be praying. As always.

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  2. Praying for your family, the doctors and most of that that adorable, precious, and perfect baby girl.

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  3. God is near all of you. He is with us in the valleys and in the high places. Lydia is a princess of Heaven and the Lord has wonderful plans for her. That is a promise from the Bible (Psm 23). I will continue to pray for her.

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  4. Thinking of you...

    She is a cutie!

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  5. Ok we need to discuss the absolute beauty that is this child of yours... She makes me smile so much my face hurts!

    You know you are always in our prayers!

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  6. love you guys and praying for you all! i'm glad God knows what you need!....praying for that!

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  7. Praying for comfort for sweet Lydia during this difficult time with her siezures. And comfort and strengh for you and family as well to help her the best way you can! Love you guys<3

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  8. Lydia remains in my prayers, as do you. I know how exhausting this is for you. Sending prayers for strength your way, and for comfort hers.

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