Stay Connected

Page 4 of 7 FirstFirst 1 2 3 4 5 6 7 LastLast
Results 31 to 40 of 68

Thread: Identifying Genes Which Cause CDH

  1. #31
    I am off to take Taylor to dance--but will look as soon as I get home.
    I am excited to see the picture of COLE!!!!!
    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. #32
    HAVE FUN !
    DId you get to look at the pic yet ???
    LOL
    ATV ride in VA!

  3. #33
    FYI everyone, Meaghan Russell will be one of our guest speakers at our conference!!!!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  4. #34
    I checked with my hospital to see if they had any of Faith's blood stored, in case we wanted to do the study. But htey didn't Our nurse said that the babies can't have received blood product before their blood is drawn. They have to wait 3 days or something. So if they didn't take Faith's within the first 24 they would have no way to test it, because after that she had lots of other peoples blood running through her. Go blood donors!! Thank you to anyone who donates blood.

    I look forward to hearing her talk at hte conference.
    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>

  5. #35
    I don't have any of Shane's blood either, so I can't participate in the study's either. So that makes works hard to recruite families that can.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  6. #36
    Anybody know if this is the study looking at Polish ancestry? Nicole's having blood drawn in the next few weeks and I just left a message with this contact.
    Chris Tennyson Married to Matt 12 years Mom to Nicole- born 01/06/07 with LCDH- diagnosed in utero at 18 wks. Has g-tube- reflux- eosinophilic esophagitis (EE)- and scoliosis- but one happy and busy toddler! http://i296.photobucket.com/albums/m...s/IMG_5502.jpg

  7. #37
    Chris-
    I am not sure about the polish ancestry?
    Did you leave message with Meaghan?
    She is GREAT at calling back.
    There is a lot of paper work to be filled out.
    I hope you have made contact with Meaghan.
    She was a HUGE help and answered So many questions for me when I called.
    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]

  8. #38
    HEY .. i'll do this study, I JUST feel so bad b/c i had started everything with Meghan and then just abrubptly stopped b/c of cole being sick one illness right after another.; . now i feel is a more appropriate time, so maybe when she's at the conference i can apologize in person and get things DONE !
    the detailed family history was what i had issues with, my dad had 17 brothers and sisters, so the social history isnt very accurate, HOWEVER i can be %100 accurate with scott, cole and myself .....

  9. #39
    I talked with Meghan this morning. She's so nice! One of the tests for the study is one Nicole's neurologist would like done, anyway--DNA microarray. I'm a realtor, paperwork doesn't scare me!

    After talking to Meaghan, I think the Polish ancestry study is a different one, or a subset of another study. An agent at Matt's office mentioned it to him when Nicole was in the NICU.

    Penny, Cole's pic in your sig is adorable!
    Chris Tennyson Married to Matt 12 years Mom to Nicole- born 01/06/07 with LCDH- diagnosed in utero at 18 wks. Has g-tube- reflux- eosinophilic esophagitis (EE)- and scoliosis- but one happy and busy toddler! http://i296.photobucket.com/albums/m...s/IMG_5502.jpg

  10. #40
    I want to be a part of this study. please give me the info. email at blondebe@msn.com or call 864-627-8644. Lynne Brogdon. We are not of Polish decent only German, English and Scottish.
    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

Similar Threads

  1. Identifying Genes Which Cause CDH
    By admin in forum Research Studies (Public)
    Replies: 0
    Last Post: 08-25-2007, 03:13 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •