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!

Wednesday, November 22, 2006

You may have wondered why we have not updated the blog since we last told you we had a feeding pump. You may have guessed that we finally got to sleep and slept for days, OR that she still cries the whole time the sun goes down. The later would be correct! Still from about 11pm to 5am, Claire is not only awake, but crying as hard as she can. We think we have tried everything, and she has no problem using the bathroom, so we just continue to rock, walk, sit, anything to try to appease her. Tonight, instead of trying the slow continuous feeding, we are going to attempt to feed her larger amounts periodically, hoping to "fill" her tummy and then stop. We just wonder if she "feels" hungry not having a full meal from time to time.

Claire continues to attempt to suck a pacifier, but fails to understand the concept of a bottle. Tammy enjoys trying to feed her by bottle, but I wonder sometimes why not just take the top off and pour it all over themselves, because that is what it looks like when she finally gives up. It can be quite funny.

We had the pleasure of meeting Eliot's parents, Matt and Ginny, this past weekend. They came down to the beach with some friends, and boy what a pleasure. We all prayed together and gave thanks for our children. They are as nice as the blog site made them sound. They are a wealth of information for us, and we want to thank them publicly for everything they have meant to us. Eliot was a lucky boy!

Claire has asked for a turkey leg tomorrow, we think she likes the skin the best!
HAPPY THANKSGIVING

7 Comments:

  • At 5:13 PM, November 22, 2006, Anonymous Anonymous said…

    Every beautiful girl needs a milk bath! You go Claire! Enjoy the skin and share some sort of dessert with Mom! We should all count our Blessings this Thanksgiving and remember those less fortunate.
    Love and Prayers to all,
    John, Sheryl, Hayden and Mary Graf

     
  • At 7:07 PM, November 22, 2006, Anonymous Anonymous said…

    Thank you for the update. I have been checking each day, two or three times a day. How wonderful that you were able to meet Eliot's parents...God blesses us with friendships that are meaningful and I know your paths were sure to cross for this special reason. I am so excited about little Claire trying to take a bottle..what a treat! I still love the lollipop moment the best! Tomorrow is a day of giving thanks...as we all thank God for our families and blessings, we remember to thank him for Claire and for how she has affected so many lives in a positive way. We also thank God for parents like you and Billy, and for sisters like Camille. Happy Thanksgiving to you all and continue to be blessed! Give Claire and Camille my love.

    Diane Gilmore

     
  • At 8:45 PM, November 22, 2006, Anonymous Anonymous said…

    Sometimes I think babies cry because they do not know how to express themselves any other way .Claire has so much to say ,and she doesn`t even know that we hear her sweet cry.
    I am thankful for your family and the lessons of love you teach us .

     
  • At 12:04 PM, November 23, 2006, Anonymous Anonymous said…

    Today's Thnaksgiving and you guys have so much too be thankful for! You have two beautiful daughters! Give thanks to the Lord for He is good! Let all creation rejoice in your gladness!

     
  • At 11:16 PM, November 23, 2006, Blogger Kim said…

    Happy Thanksgiving! I'm really glad you were able to meet Matt and Ginny. That must have been very encouraging to you guys. Do not grow weary doing good...We are praying for you.

     
  • At 9:28 AM, November 24, 2006, Blogger Sarah's In the Midst of It said…

    I found your site through Eliot's a while back and check on you several times a week. I continue to pray for your family and for sweet Claire.
    I hope you had a Happy Thanksgiving!

     
  • At 10:25 AM, November 25, 2006, Blogger Matt Mooney said…

    What an honor to meet you guys. This blog cannot contain what a precious family you guys are. It was so great to meet you in person. Claire is amazing. A weekend at the beach could not compare to five minutes of Claire.

    We continue to pray.

    Matt & Ginny Mooney

     

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