A day in the Life of Claire

This spot is dedicated to the preparation and life of Claire Cox. Claire has been diagnosed with Trisomy 18, which is a genetic disease caused by an extra chromosome at the 18th spot. We know that God can cure Claire at any time, and continue to pray for this; however we also know that His Will, will be done!

Monday, October 09, 2006

Home at last - Home at last. What a great feeling! We all got home Saturday, but went into morning over Auburn's loss to Arkansas. As you have seen, Claire insisted on honoring her boyfriend (sorry Scott Spann, she doesn't listen to her parents much when it comes to Eliot) by dressing up as a razorback fan (we can only assume she is getting ready for Halloween).

It has been wonderful being home, even the every three hour feedings are not bad (yet). Claire has moved up to getting 24ml of food every three hours (through her NG tube), and is almost maintaining her own body heat. Tammy is just now getting use to the feeding ordeal. We work great as a team, she changes the diaper and takes her temp, while I am checking her stomach contents and putting her food through the tube. We keep her in an isolet (incubator) when we are not holding her, and take her temperature about every other hour, she is rarely below 97'. The Hospice nurse come by today, she took all her vitals and weighed her and said everything looked good. She now weighs a hugh 3lbs 4oz. The physicians still only think she can live for 6-8 weeks, although many trisomy-18 babies make it longer. If you have looked at the trisomy-18 link on this site (or any other), you would see T18 is ALWAYS fatal, affects every cell of the body, and each child is affected differently.
Claire hardly ever cries (it is actually funny that one of the few times she has cried, was for her razorback picture). When she does, you barely hear her. It is a very weak, soft cry, it almost sounds like a small kitten. Most of the time she sleeps. We know she can see light, as she responds to camera flashes, however, it is starting to appear that she may never actually see us. It seems she may never have the ability to hold her eyes or focus them. She often cannot keep her eyes from rolling up into the top of her head, where you can only see the whites of her eyes (it does not look good). She still can not take a baby bottle either, we keep hoping and praying that will change, so pray with us on that.

I have got to tell you, Claire is not even 1 week old yet, and she has affected more people in a positive way, than Tammy or I have done in our lifetime combined. GOD is truly glorious and works in ways that many times we do not understand. But I am here to tell you, from her Parents point of view, we see GOD'S action, and even "think" we understand it. Claire is a true BLESSING and we are so thankful to see what she has already done.

35 Comments:

  • At 9:02 AM, October 10, 2006, Anonymous Anonymous said…

    Glad to hear all is going well. Claire is so lucky to have you as parents and we are all so lucky that you have chosen to share her with us. We all come in every day to check our e-mail for Claire's update. She is nestled deep in our hearts, and we think of all of you daily. Look at all the blessings Baby Claire has brought ALL of us already! Tucker is giving your blog to his CCD (Religion) class and you are about to have a whole new group of Pensacola folks in on the prayer chain and sharing sweet Claire:)

    We love you! Keep up the good work! And Claire..we forgive you for not flying the Auburn colors, but sometimes you have to do what you have to do for "your man."
    Melody, Richard, Garrison, Peyton & Tucker

     
  • At 9:10 AM, October 10, 2006, Anonymous Anonymous said…

    Claire IS a blessing. You know we are all tools in GODS toolbox and I believe Claire is the biggest tool of all. She has touched so many people lives. I hope to get to see you around Thanksgiving, Tammy.

    Tracey Meacham Gann

     
  • At 12:35 PM, October 10, 2006, Anonymous Anonymous said…

    Billy - When you say that "Claire has affected more people in a positive way than you or Tammy combined" I agee Claire has changed so many lives in such a positive way but I don't think you realize that you and Tammy have done the same for all of us as well. You are both amazing! I am blessed to call you friends.
    Love Rachel

     
  • At 3:31 PM, October 10, 2006, Anonymous Anonymous said…

    Your friends in Wedowee know how blessed you are and say a prayer for you everyday. She has truly shown the love of family and friends.
    Debbie and Butch Rice

     
  • At 6:26 PM, October 10, 2006, Anonymous Anonymous said…

    This family is a fan of Eliot's and any (girl)friend of his is a friend of ours. We don't even really know Eliot, but feel so blessed to know him through his blog and to meet you and Claire through yours. God is touching us in ways you can not even imagine by your amazing testimony. Claire is GORGEOUS. Thanks so much for sharing your story with us cyberfriends. We're praying for you.

    Love,
    Natalie
    Macon, GA

     
  • At 7:08 PM, October 10, 2006, Blogger a bra that fits & a can opener that works said…

    Claire is beautiful! Thank you for sharing your story. I look foreward to your posts & Eliot's too!
    It's amazing how much the Father has to teach us thru his wonderous works...Claire & Eliot, chief amoung them.
    thank you

     
  • At 8:31 PM, October 10, 2006, Anonymous Anonymous said…

    Claire is soo cute! I will praying for Claire and her family!

     
  • At 5:33 PM, October 13, 2006, Anonymous Anonymous said…

    Keep the faith, Coxes!

    I came to learn your story through little Eliot's website, and coincidentally, have also worked with special needs 3-5 year old students and their parents for the last 7 years in Houston, TX.

    2 years ago, I met a little girl named Emily. Actually, I first met her with her dad 3 years ago (but that's a whole other story!)... I came to know her parents better when I evaluated Emily and they enrolled her in our early childhood special needs program 1 year ago - at the age of 3. She is now 4 years old and thriving! She, too, is a Trisomy 18 baby (full syndrome, not "mosaic"). She was being followed by hospice when I first met her. Approximately 6 months after she started with us, hospice care was discontinued - praise the Lord, her parents are now able to look to the future with Emily with hope. They, too, continue to count their blessings each day, but Emily has far exceeded any expectations they were initially given.

    True, it is rare for a Trisomy baby to make it this far, but so far, it is happening and little Emily (and her family)have blessed all of us.

    Rejoicing with you in every minute, every hour, every day you have with Claire and praying for you and your family.

    God bless you all!

     
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