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About Claire

Claire was diagnosed with a congenital diaphragmatic hernia birth defect during her 19-week ultrasound. She was born in June 2007 in Birmingham, AL. She had repair surgery when she was 6 days old and was in the hospital for 22 days. She had surgery again when she was 3 years old to fix a re-herniation, and she also began wearing a brace for CDH-related scoliosis.

Previous Entries

CDH Info

  • What is CDH?
  • CDH Video
  • Postdischarge Follow-up
  • Raising Healthy CDH Children (Facebook)
  • Raising Healthy CDH Children (Blog)
  • DHREAMS Research Study
  • Mass General Research Study
  • CDH Study Group
  • Breath of Hope
  • CHERUBS
  • Global CDH
  • Nayeli Faith Foundation
  • Parker Reese Foundation
  • Real Hope for CDH

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Baby Claire - CDH Story

Tuesday, June 16, 2009

New Blog

I started this blog before Claire was born to keep our family and friends updated about her CDH. It was a great tool to have while we were up at the NICU because it kept me from having to make so many phone calls and allowed everyone to see pictures. Since then it has become an "online baby book" (I love going back and reading my old posts and remembering all of Claire's major milestones), has kept our out-of-state family in the loop, has raised awareness about the congenital diaphragmatic hernia birth defect, and has provided hope and information to expectant CDH parents who stumbled across it via search engines.

But now that Claire is two years old and doing so well, it seems like a good cutoff point. So I'm going to stop posting here and start a new family blog instead. Please update your bookmarks to http://williamsfamilytn.blogspot.com if you'd like to keep reading about our wonderfully exciting life :-) If not, thank you for keeping up with Claire these past few years and for all of your kind comments.

I'm going to keep this blog available to the public so that future CDH families can find it, and am going to get it printed into a book for Claire to have when she is older.
posted by Cindy at 8:02 PM 3 Comments

Monday, June 15, 2009

2-Year Checkup

Claire had her 2-year checkup with the pediatrician today. She weighs 23 lbs (5th percentile -- WOO HOO!) and is 33 inches tall (25th percentile) and everything looks great. It was an easy visit because she didn't have to get any shots, but she still hates the doctor's office and kept saying "go", "car", and trying to open the door to escape the little room. When I wouldn't let her she decided to keep herself busy by playing with tongue depressors and cotton balls, climbing on the furniture, and opening all the drawers in the cabinet.

2-Year Checkup

We are going to the beach soon and would like Claire to sleep on an air mattress in the floor rather than in the bed with us (she slept in the bed with us in Gatlinburg a few weeks ago and none of us got any sleep because she is so wiggly). So as an experiment we put her crib mattress on the floor in her room this weekend to see if she would sleep on it. She LOVES it. She got up a couple times the first night, but last night she slept the whole night through. She also put herself down for a nap yesterday -- I was doing dishes and thought she was in the living room watching Dora, but found her fast asleep in her bed instead. I had no plans to move her out of her crib this soon, but since she likes her "big girl bed" so much we are going to disassemble her crib and eventually get her a twin bed.

Big Girl Bed
posted by Cindy at 4:17 PM 5 Comments

Thursday, June 11, 2009

Johnny Rockets

Claire and I ate lunch at Johnny Rockets today. At one point they started playing disco music and the waitresses came out and danced. Claire could not contain herself and had to get out of the booth and start dancing too. She stood beside them and copied their dance moves and added a few of her own. Pretty much everyone in the restaurant was watching her and laughing. She definitely stole the spotlight. Our waitress offered Claire a job at Johnny Rockets whenever she is old enough. Maybe we will get free hamburgers some day.

posted by Cindy at 8:52 PM 3 Comments

Sunday, June 7, 2009

2nd Birthday

Happy Birthday Claire!!! Here are some pictures and video from her party this weekend. She loved her cake, especially the fiery candle. And she got some toys and books and other gifts, including a Minnie Mouse hat from her cousin Casey who works at Disney World.



Wow Wow Wubbzy Birthday Cake

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posted by Cindy at 1:22 PM 11 Comments

Wednesday, June 3, 2009

Bounce House

We went ahead and gave Claire her bounce house birthday gift a few days early. It is definitely a hit!

Enjoying Her Birthday Gift

posted by Cindy at 10:44 AM 7 Comments
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