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Thread: 2008 CHERUBS International Member Conference & Events!

  1. #51
    What address did you send them to?
    I did receive your signed rules via e-mail this evening.
    I am in contact with Dawn and I will get with you tomorrow--and we will get you started.
    You are SO awesome for all the enthusiam(sp) you have!!!! I LOVE IT!!
    I wish I lived in SC and could have you as a rep--but I will get to meet you in JULY!!!
    Gosh--I am SO excited to be able to meet with other CDH families. I truly hope that this conference is GREAT and we can do it every year.
    If not every year--at least every couple of years.
    It is almost a sad issue--to know that CDH babies will be born everyday- and yet there is no cure for CDH and families feel they are alone.

    As we all know--they are not. I really wish every family knew about CHERUBS and knew that we are here for them. No matter what their situation may be.
    We are all working So hard to get CDH Awareness out there---I feel in years to come, even months, we will be there. No family will be alone in this journey.
    They will know that CHERUBS is here for them!

    We really do change the subject don't we? or maybe it is just me!!!!!! lol
    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]

  2. #52
    Dawn,

    I have spent the last hour pouring over the videos. I replayed Shane's video 3 times with tears in my eyes. My little high-five buddy! I certainly miss him so much. I can just imagine if both Christopher and Shane were alive, what a blast they'd be having together. I'm sure Christopher would be teaching Shane all the "ropes" of being a teen smitten with his first crush on a girl, giving him advise on how to act at his first dance, working on cars together, and most definitely fishing and crabbing buddies. I'm sure that Christopher would have felt that Shane was more of a brother than his existing male cousins. I know that our boys are having a blast together in Heaven and have been ever since Christopher first welcomed him.

    For those of you that aren't "old-timers" in CHERUBS, I was one of the few lucky and Blessed persons in CHERUBS to have had the opportunity to spend a lot of time with Shane. Not only at a few events that Dawn, Jeremy & Shane attended where a several other members met Shane, but I had them stay at my house a few times. Tara, Barb, and I threw an early 6th birthday for Shane at my house while Dawn, Jeremy & Shane were there - and they had no clue that we had just dreamt up the idea and gone behind their backs - right in front of them - and even baked a cake and decorated my dining room with party goods and presents! I honestly can't tell you who had more fun! I also spent a lot of time going to Dawn's house on weekends from VA to NC and helping Dawn with Local Board Meetings and also spending a lot of time learning all the ins and outs of running CHERUBS and countless hours of folding & stapling papers and stuffing folders or getting newsletters ready for mailing. During these weekends, Mr. Shane was always there, right in the middle of everything! That special little boy and I grew very close and I was always so excited to see him as he was to see me. Shane will always have a very special place in my heart and I am so honored to have met him and have him be my little "high-five" buddy!

    Dawn, you did an absolutely amazing and phenominal job putting together his video. You also did such a superb job of putting together the slide show of the CDH Families! I swear, you are the most talented, resourceful, and dedicated person I have ever met in my life! I am always so amazed when you come up with a new idea and then execute it to perfection! You are one of the most unique people I have ever had the pleasure and honor of meeting, let alone being able to call you my friend!

    There's only two small smidgen items that you might want to change on the video if you get a chance. I found that some of the written words went by just a little too quickly before I hade a chance to finish reading the message. And is there a way to update today's member numbers vs the numbers that are listed?

    Overall, Dawn, once again you out did yourself and I'm so proud of you! I will definitely send out the link to the video to everyone I know - to spread the Awareness of CDH.

    Love ya! xxoo Moi
    {o/} ? /_?? Judi- Mommy to Jennifer Melissa- m/c 2-80 and Christopher Michael- 2-2-1989- left side CDH- born in Heerland- Holland- 1 repair w/dura- lived 19 hours. Buried in Milford- Connecticut. MD- VA- DC & CT State Representative. Mommy's and Mama's Guardian Angel and Inspiration! (Still trying to figure out the coding to put Christopher's Ribbon here also BUT IT'S NOT WORKING! SIGH & URGH!)

  3. #53
    Is it too late to make reservations and get credit for our conference room? I will call tonight if it is not too late.
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  4. #54
    I don't know if it is to late--but I would go ahead and get your room booked. Maybe if we are a few shy--this will get us there!
    Dawn left a message with the hotel--to see if we got enough rooms to get the discount.
    Cross your fingers we did.
    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]

  5. #55
    i just booked my room! YEA!!!!!!!!!!!!!!!!
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  6. #56
    Senior Member karahess's Avatar
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    Awesome!
    Kara- mom to Aaron (8-30-03) and Adam- LCDH (8-7-06). Gastric Volvulus at 7 months old; Borderline Chiari Malformation; reherniation- bowel blockage and intestional malrotation at 26 months old; Apraxia of Speech - neurological speech disorder; Auditory Processing Disorder; Asthma; and frequent headaches.

  7. #57
    Kara, We are gonna have soooooooooooo much fun!
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  8. #58
    Anyone else hear if we made the quota for rooms???
    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>

  9. #59
    We haven't made our quota yet.
    The hotel has given us until June 30th.
    I think I read that right!??
    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]

  10. #60
    ugh! I was really hoping that we would have it met! I think my parents and sister are going now! I will get them to book through that hotel!
    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>

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