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Thread: Awareness Idea

  1. #11
    Hope you start feeling better soon!!
    Donna Easley mother of Alexander born 9-28-06 with RCDH ECMO 9 days- ASD- chronic lung disease- pulmonary hypertension- tracheomalacia- reflux- nissen- g-tube- trach and home vent since 6/2007 overall a happy and rotten 2 year old and little brother to Walker (5) http://www.totsites.com/tot/alexeasley http://webpages.charter.net/jtejctn/cdhsmall.jpeg

  2. #12
    I would like a couple also. Please email me info when you ahve it. Thanks!

    Carrie
    Lots of Love- Carrie Mom to Colton Michael- RCDH-Surgery at 5 days for a repair and at 6 months to add a patch.

  3. #13
    Kate what a great idea to have it on a CHERUBS tote! I want one of those if she can do it!
    Amy Miles Faith Grace Miles Born 3-6-08- she lost her battle with CDH on 4-5-08 due to complications with deficiencies in blood clotting factors- albumin leakage from silo- pnuemothorax- and PPHN. LCDH- stomach- bowels- and liver/gallbladder up and gortex repair http://i304.photobucket.com/albums/n...Gracesmall.jpg www.carepages.com (search for FaithGraceCDH) www.firstgiving.com/faithgracecdh __________________________________________________ _____________ A gift from Heaven due on July 4th- 2009... http://bd.lilypie.com/pABbm5.png <a><img></a>

  4. #14
    Aunt Nancy - you take care of yourself forst! Let us know how you are feeling
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  5. #15
    Aunt Nancy was rushed on Wednesday to the hospital, her left lung was so imflammed that it starting crushing her heart, she was spitting up alot of blood. She wasn't feeling good and didn't want to go to the hospital, but by wednesday, she had to be rushed in. She was running a 107 fever and couldn't breathe on her own. She is in the hospital and is doing a little better, I haven't gotten the tickets yet for the ball, I hope to buy them if there are still some left, by the end of this week. I hope you all pray for my Aunt Nancy. Elijah is now walking 100 percent and getting into everything, I have been thinking about getting roller skates (just kidding). He had his 6 month check up at duke on thursday and they say that length wise he is in the top ten, but weight wise, in the bottome 3, Just having alot of problems with him eating and drinking, nothing seems to stay down and he throws up at least 3 times a day, the doctors want him on this drink something like ensure, i have it written down, any ideas? thank you, can't wait to see you all at the ball and conference, hopefully aunt nancy will be better, and she can get started on the irons and make it to the ball.
    love
    kim

  6. #16
    Kim, please tell Aunt Nancy that she will be in our prayers and thoughts. I am so sorry to hear what has happened and I will be thinking of her and hoping that she gets through this with no problems. Please get some rest and take care of yourself and Elijah. What an amazing little boy he is.
    Donna Easley mother of Alexander born 9-28-06 with RCDH ECMO 9 days- ASD- chronic lung disease- pulmonary hypertension- tracheomalacia- reflux- nissen- g-tube- trach and home vent since 6/2007 overall a happy and rotten 2 year old and little brother to Walker (5) http://www.totsites.com/tot/alexeasley http://webpages.charter.net/jtejctn/cdhsmall.jpeg

  7. #17
    Kim,
    I'm so sorry Aunt Nancy has been rushed to hospital. I am thinking and prayering Aunt Nancy feels better soon.

    Exciting news Elijah is on the move fulltime. You will need to invest in some roller skates now he is into everything.

    Was it is pediasure you were told to try?? Is Elijah on any meds for reflux.

    Take care and i hope you get the tickets for the ball this week and of course Aunt Nancy is well enough to go..

    hugs
    xx
    Sharon - mum to Liam - 30/04/03 RCDH- 2 CDH repairs- Vent: 22 days- oxygen: 315 days- ectopic right kidney- NG Tube: 3 years & 7 months Chelsea-Rose - 08/03/99 Co-Rep for Australia - sknott@cherubs-cdh.org http://i281.photobucket.com/albums/k...nLiamsmall.jpg

  8. #18
    Kim,
    Please know that Aunt Nancy will be in my thoughts and prayers.
    I send positive thoughts that she improves quickly and she can return home.
    There is NO place like home.
    How wonderful that Elijah is getting around and keeping you busy.
    About the feedings--I have the same question Shaz has--is he on anything for reflux?
    I would ask your doc if he/she thinks it could be reflux and get Elijah on some meds or do some tests--like a swallow study and they can see if he infact does have reflux?
    Have you tried to slow down the feeds and see how he does?
    Just some suggestions for you.

    PLEASE keep us updated on Aunt Nancy and we LOVE the updates on Elijah.

    Keeping you all in thought and prayers.
    BIG HUGS!!!!!!
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  9. #19
    Sending tons of prayers for Aunt Nancy, let he rknow we are thinkign about her and sending hugs to her! Wonderful updates of Elijah Kim!!! Keep them coming!!
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  10. #20
    Sending tons of prayers for Aunt Nancy, let he rknow we are thinkign about her and sending hugs to her! Wonderful updates of Elijah Kim!!! Keep them coming!!
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

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