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!

Friday, October 13, 2006


10 days old today! Who ever would have thunk it??? Sweet Claire seems to be getting stronger and stronger. We are very happy with her eyes, she is getting better control over them and not letting them roll back up into her head as much. I think she will be able to see us one day (if she can't already). Her color is fabulous. She also has enough strength to move her head, she can't really pick it up though.

Today was a tough day for her (and us). We changed out her NG tube, which meant we had to pull all the tape and glue off her fragile face. She seemed to take it well (better than us). The nurse (Sherri) could not get the new tube down her other nostril, so we had to go back into the same side, which meant we had to re tape her already chapped left cheek. It seems her right nostril is smaller, so Sherri could not get the tube down that side, hopefully next time we can do the right side. We also tried to give her a bottle again, but to no avail. Claire did not want anything to do with it. We are going to keep trying to get her interested in her pacifier so she can learn to suck.

I have to keep reminding myself just how tiny she is, 3lb4oz. THATS TINY!!! The pictures don't really show it. She fits right in the palm of your hand.

Camille seems to be getting a cold, and this has us concerned for Claire (and Camille). Tammy has become the "germ Nazi", (buy Lysol stock).

Tammy and I both left the house today for the first time since we went to the hospital. We were both back within 2 hours, and as good as it felt, neither of us could wait to get back. Keep sending us comments back (or emails), we love them, and please keep up the prayers!

8 Comments:

  • At 12:02 AM, October 14, 2006, Anonymous Anonymous said…

    Hi Cox Family,
    Sorry we have been out of touch through our comments and emails, however, we visit your blog each evening to see Claire's progress and that sweet little face! We pray for you every day and continue to feel blessed that you are part of our lives. You have continued to show us your strength and faith which certainly helped us in our time of need last week - you made us "believe" when our little miracle arrived!
    Claire is amazing just like both of you! We certainly were not shocked to see that Claire is "oh so stylish" just like her precious mommy! Emma said to tell Claire that she LOVES the hat she wore on her stroll and must borrow it sometime.
    Remember that we think of you always and can't wait to visit soon. Kiss those precious girls for all of us and continue to keep the FAITH! We love you
    The Zoghbys

     
  • At 12:41 AM, October 14, 2006, Blogger Matt Mooney said…

    These pictures are great. She is beautiful. I love "hope" in the background. What a great reminder.

    We are praying for you. For rest, for peace, for joy, for laughter, for the Lord's presence to be felt stronger than ever before in your lives. For Claire.

    Matt, Ginny, & Eliot Mooney

     
  • At 8:18 AM, October 14, 2006, Anonymous Anonymous said…

    Tammy,
    You have been an inspiration to our family. We have been keeping up
    with Claire thru Marty. Our sunday
    school class has been praying for
    you every week. Marty is so special to me she was the one who prayed with me countless times,thru my moms death. Wow what an impact she gives you in a friendship,she led me to ask Jesus in my heart. We think Claire is beautiful and looks like an angel. The situatio n has been a learning experience for our 3 boys
    we pray for her every night. We also answer questions about her
    condition their concern is heartfelt. I know you must be tired but the Lord as you know will give you the extra strength.
    Phil:4 I can do all things in Christ who strengthens me.
    P.S. I wanted to tell you you have
    the most awesome doctor in Mobile,
    He delivered all 3 boys,the man has bedside manner.
    Love in Him
    Kim Williams

     
  • At 8:30 AM, October 14, 2006, Blogger Kim said…

    We are praying for you! What a little sweetie Clarie is! We know God is in control of every event that comes your way and we pray He will give you grace for each moment. You are blessed! This is no lapse in the goodness of God and He will sustain you. Thank you for sharing your heart,pictures, and Claire's life with us! It has indeed encouraged us!

    Kim
    www.lifesong-kim.blogspot.com
    www.myadoptionwebsite.com/lydia

     
  • At 9:09 AM, October 14, 2006, Blogger Joseph Thompson said…

    Thanks for the update.. Keep enjoying everyday. We had a wonderful Camp Bluebird .Many prayers needed there as well. I couldn,t wait to get the the PC for my Claire update. Claire is just precious and blest to have a wonderful and caring Mother and Father. Keep looking up. Your friends Joe T and Judy

     
  • At 10:29 AM, October 14, 2006, Anonymous Anonymous said…

    Hey, guys...forgive me for waiting so long to contact you...you have been MUCH in my thoughts. I am NOT a "techie," so it was a little tricky for me to find your blog...ANYWAY....

    I've read a bit about Trisomy 18 and it brings back a FLOOD of memories from June 18, 1984, when Mr. Taylor Causey joined our clan! Taylor, of course, is Trisomy 21, your typical Down Syndrome boy...our latest "victory" with Taylor has been his COMPLETELY successful "re-do" of surgery at the Iowa Medical Center in Iowa City...(the original surgery, on his verterbrae and brain stem was done at Emory in Atlanta...a complete FAILURE...Taylor endured HORRIFIC pain for almost 2 years before we found help!) Anyway, the GREAT news: he's off ALL medication and RODE HIS BIKE for the first time in almost 3 years the other day!!

    Enough of us...

    More of you...

    I know the flood of emotions you guys have (and are) experiencing have been overwhelming. I remember "rushing ahead" and thinking of things like, "Oh, my God, this boy will NEVER be able to go to College...drive a car...go on a date...etc. etc. etc. ...all these thoughts when he was only HOURS old...Finally, a wise nurse said to me, "For the moment, you just have a precious, little newborn son who will absorb all the love you are willing to give and return it ten-fold!" Was she EVER right! I can't imagine my life without Taylor. He's spending the night with me tonight, asleep in his room, FREE of pain and RARING to go...talking a mile-a-minute...happy...laughing....
    singing...in effect, I've had my son "returned" to me after a long absense of pain and suffering for him!

    From your blog, it seems to me that you guys are doing all the right things and, the best part, your hearts are open and willing to face whatever you need to face. That's another thing...day to day, you'll know more and more and, as we know, life goes on, even when we sort of hope the world will stop and "take notice" of our trials and tribulations.

    Marianne and I lost a baby girl (she came almost 3 months early and didn't make it), so I know the fears and dread and heartache that come from a "failed" or "complicated" or "different" pregnancy. That experience, as horrific as it was, made Taylor's life (and ALL life, for that matter) so much dearer to us all.

    I don't want to sound "preachy," but I guess the best thing I can offer at this point is sort of what I mentioned before: for now, you guys just have a new family member who needs a great deal of extra care and love and it sounds like she's receiving that in SPADES, ha!! Try not to "jump ahead" too far and worry about things that may, or may not, ever occur or even present a problem. We're all given a certain amount of time here on earth and, thankfully, we're not in charge of that!! Make the best of it.

    Also, I found that at first I was anxious to read as much as I could about Down Syndrome and try to become an "expert" ... it was an impossible task...I finally realized, "...just go with the flow...do what YOU think feels natural and loving..." that's the best any of us have to offer. I'm glad to say that, at this point, I sometimes have to remind myself that there's anything "wrong" with Taylor. Taylor is just Taylor...a gift from God with a kind of "different" wrapping paper! (When I'm aware that someone is staring at Taylor, I think, "Why are they staring?" and then I remember, "Oh, yeah, he's got Down Syndrome." (So?) If there were a "cure" for Down Syndrome, I'm not sure I would take it...I love Taylor just the way he his...in a way, his "uniqueness" is all that more special.

    SOOOOOO...... enjoy and love this little Claire for as long as you possibly can...every day is a gift of sorts that needs "sorting out" for sure, but a gift that I feel sure will become more evident with each passing day.

    Just know that you have the love and support of all your HUGE family and that of friends and even strangers. (Another benefit: in your "journey" you'll meet...as I'm sure you already have...literally HUNDREDS of the greatest people on earth...People (doctors, nurses, specialists, etc.) who devote their lives to helping "special kids" are some of the most fantastic folks you'll ever meet!)

    My thoughts, prayers, hopes, tears, and LOVE go out to each of you during these first days of Claire's spot in the universe!

    Much love to you all,

    Joe

     
  • At 12:57 PM, October 14, 2006, Blogger On Our Way To Russia said…

    God bless you each and every one! Go Claire! We're big fans. Blessings!

     
  • At 7:37 PM, October 15, 2006, Anonymous Anonymous said…

    We are praying, praying for all of you! War Eagle, and I am not a fan, but Katie is. Great game. ROLL TIDE ROLL!!!! Claire looks awesome in her tiger gear! I can't imagine what you two went through yesterday with the tube. My mother used to say to me. "I'd take it away from you if I could", I know you would do the same for your precious angel. Both of your angels. I hope that Camille is feeling better soon. Tammy, if I can do anything for you, please let me know. Tis a very helpless feeling here. Just know that the prayers for your family are going up!

    Take care.

    Jane

     

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