Ray Ray, our Bay Bay

June 27, 2013

Filed in: GA-1, Life, Reagan, Thoughts

Seriously so proud of my little girl. Just something I’d like to share, Reagan Elle means “noble girl” and she’s already starting to live up to the meaning of her name.  I don’t know what God has in store for her or for us, but a friend of mine at church recently said to me: “Do you find it crazy that God just planted her in your life? She’s got such an amazing story already and she’s only four months old! AND, God chose you guys…He CHOSE YOU!”

Mind. Blown.


I often think that God made Reagan with us in mind, and obviously He did b/c He’s God and He doesn’t do anything by accident.  Although we have no DNA connection to Reagan, our inherent mark will be on her life, just as her mark will be on our life, and already is. The way that God made Reagan for us is amazing.  She’s helping us face fears, learn more about us, about God, about prayer, about love, about people, about what’s really important.  Having a child changes your life…and people say that all the time, but you don’t understand what it means until it happens.

She recently had a Nemours visit and her test results were great and I just knew they would be…she’s growing wonderfully and we are upping the protein yet again.  I am praying that God heals her…every night Rob and I hold her together and pray for healing before we put her in her crib.

Verses like this remind me of God’s incredible power to heal:

Luke 6:19
and the people all tried to touch him, because power was coming from him and healing them all.

Matthew 9:35
Jesus went through all the towns and villages, teaching in their synagogues, proclaiming the good news of the kingdom and healing every disease and sickness.

Side note: Jesus healed EVERY DISEASE AND SICKNESS! Jesus had the cure, was the cure, IS the cure! 

One purpose of this blog is to give hope to other families who receive the shocking news that their newborn has Glutaric Acidemia Type 1. And even though Reagan is only four-months old and has lots of growing left to do, plus more Dr. visits and tests, she’s thriving and meeting milestones, I pray, and I ask that you also pray, that this continues.  And I ask that you pray for healing, a complete miracle.

The other night, Reagan slept nine hours.  I know most parents would be ecstatic at how wonderful that would be, but actually, a child with GA-1 can’t “fast” this early on.  Somehow our alarms did not go off for her middle of the night feeding and Reagan didn’t cry at all, she just slept soundly for three hours longer than she should have.  So I let her Dr.’s know and they said, as long as she woke up fine, she’s fine.  The reason it can be dangerous is that if you repeatedly let a child with GA-1, sleep through the night, or “fast” that’s when a crisis could occur b/c they need to break down  something…and without providing her food every six hours, she’ll start to break down her muscles.  By breaking down her muscles, amino acids would build up and that’s what she can’t flush out of her system.  It’s complicated, I know…I just hope that I’m relaying the information correctly.

We’re just so proud of our little Ray Ray.  She makes us laugh, and she is a complete joy in all senses of the word. So it’s easy to understand why I receive these notes on our dry-erase board in the mornings after Rob has fed her.  B/c seriously, SHE IS AMAZING!!

These are the notes i wake up to that Rob writes in the middle of the night :)

These are the notes i wake up to that Rob writes in the middle of the night 🙂


comments +

  1. Flor

    June 28th, 2013 at 4:43 am

    I would like to get in touch with you… Your story is beautiful!

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