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 01, 2006

There is not a whole lot happening lately. Claire continues to amaze us as to how much and how often she eats. She also continues to gain weight, she is now up to 3 lbs 15oz, just one more oz & she's at the big 4.0. We did actually take her out to the pediatrician on Tuesday. No real reason, he just wanted to see her. No RSV vaccine, No TB vaccine, No normal shots any other kid would get. Really just to get her accurate weight and recalculate the amount of food she should be getting. This was all good, but we had accurately guesstimated her correct intake (I guess it is good to know we had done it correctly). He did say he could not really hear her heart murmur, but only because the hole in her heart is sooooo large, it does not make the usual noise. It is really just like "one big ventricle", instead of two, pushing her blood primarily all to her lungs and back (but we already knew this).Her color continues to look good, as well as her breathing most of the time.

Claire is so tiny, we have learned that she fits perfectly in one of Camille's baby doll carriers much better than a real car seat. We just do not hold it by the handle as to not take a chance on it breaking. It really looks funny to see a real baby in this TINY doll infant seat. Camille does not appreciate loosing her toy to Claire, we are really not sure if appreciates her at all, a slight bit of jealousy. We have also "invented" a special feeding device which helps with this hour long process. It is nothing more than a simple baseball cap with a few holes cut in it to hold the syringe, this way it frees up a hand to: work the TV remote, or drink a beverage, or fight off Camille. It is really quit funny looking to wear it, but sure is convenient. We are going to put a few funny pics on the site soon for your amazement. John is coming home from Auburn every weekend to help us take care of Claire, and he is a huge help, both with Camille as well as "peanut".

Ms. Elmore is finally out of intensive care and in a regular hospital room. It is very slow going, but she continues to make progress. She has yet to see little Claire, so hopefully soon they will meet.

4 Comments:

  • At 7:04 AM, November 02, 2006, Blogger On Our Way To Russia said…

    YOu're keeping it fun! Congrats on her weight gain! Can't wait to see the hat-feeder! God bless you all. Thanks for sharing!

     
  • At 10:19 AM, November 02, 2006, Anonymous Anonymous said…

    Just wanted to let you know that we are out here everyday reading your notes and continue to be amazed by your strength. God bless all of you!

    Vince & Kati

     
  • At 8:34 PM, November 02, 2006, Anonymous Anonymous said…

    Hmmm. You know I'm betting the doc wanted to see Claire just so he could get some baby cuddles.

    Continued prayers and glad to hear Ms. E is doing better.

     
  • At 9:33 PM, November 02, 2006, Blogger Matt Mooney said…

    Creeping up on 4 lbs.! You go Claire. We are praying for you & loving the journey.

    Matt & Ginny Mooney

     

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