The seizures - oh, the seizures.
In pretty much all of her awake time, Lydia is seizing. Interestingly enough, the one time this week she woke up and wasn't seizing was when I put on a Praise Baby DVD that a kind friend (who I've never met, but I count her a friend!) sent Lydia in the mail. Let me tell you, people. It was incredible to watch her open her eyes and stare up at the images of bright colors and shapes and listen to the praise music. You can call it a fluke if you want, but I believe so strongly that her spirit understands so much more than her brain can comprehend.
Other than that, she seizes all the time. We've been giving her Atavan multiple times a day and that knocks her out. It's hard. We don't see "her" very often anymore...the little bits of her personality we cling to...we don't see it when she's medicated. Or when she seizes.
It's so strange. I feel like she's slipping away and I know the time is probably short and I know what the prognosis is. But I still, despite the intense reality of it all, can't help thinking that one day I'm just going to go into her room to get her out of her crib and she's going to be different - better.
I know you prayer warriors are out there, constantly lifting us to the Lord. Would you please pray for mercy for our girl? It all seems too much for her poor little body to take.
Also, I think I'm getting sick. I've been healthy since Lydia was born, which is a miracle in itself. But I feel that weird swollen throat thing coming on. It doesn't bother me so much for myself if I'm sick, I don't want to get Lydia sick, especially after she's just gotten better. If you would please pray that the sickness would stay away, I would be so grateful. I don't want to waste time being sick.
It's hard to take pictures since she's awake so little and seizes so often. Hopefully I'll have some pictures for you soon instead of these boo-hooing type posts. Thanks for reading and for praying for our family.
In August of 2009 God changed our lives by giving us a beautiful little girl. Lydia was born with Zellweger Syndrome. Lydia went to be with Jesus in April of 2010. This is the story of her life and death, and of our journey through grief in search of healing.
Praying for your precious girl and for your health too. xx
ReplyDeleteAs always,dear friend, lifting you, sweet Lydia, and your family up in prayer!
ReplyDeleteAnd upon your recommendation, I've ordered the Praise Baby collection from Amazon. Looking forward to seeing it!
I too have the Praise Babies DVDs and LOVE THEM. They were a favorite of my son as a baby and toddler. Even I liked them.
ReplyDeleteI am praying for you friend. Always. Especially your health. And for Lydia. For mercy and for a miracle.
I know how it feels to have those expectations of healing. Even as my girls were dying in my arms, after we removed them from life support and I was holding them in their last moments, I said to my husband that I think they can breath on their own and they weren't going to die after all. And I truly believed it. I thought I saw something the doctors could not. A little flicker of hope and life in their tiny bodies.
But in the end our miracle was Jesus taking them home. No one ever tells you how painful a miracle can be.
Love you,
Rachel
you have my prayers. my strongest prayers.
ReplyDeletePraying for your little love! You are a strong woman! And so is Lydia!
ReplyDeleteyour little girl is never far from my thoughts. praying extra hard for her tonight.
ReplyDeleteLifting you and Lydia up in prayer Jen...for any sickness to stay away and comfort for Lydia:)
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