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Old 04-07-2010, 06:09 AM
teachkjg teachkjg is offline
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Join Date: Apr 2010
Location: Ashburn, VA
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Default just stumbled upon this site....
...... I have a sweet 16 month old boy who has been trached since he was 4 months. He was born with a birth defect that is relatively rare (Pure Esophageal Atresia - EA). After several unsuccesful attempts to repair this at our local hospital Isaac was found to have paralyzed vocal chords and a trach was placed. Shortly after the trach was placed we had him transferred from our hospital in Northern VA to the University of Minnesota Children's Hospital in Minneapolis. We spent 8 months there, with Isaac spending 6 of those in the PICU there. On October 2nd of 2009 my baby finally got his whole esophagus - grown inside of him through an amazing process by an amazing doctor! We brought Isaac home for the first time in his life at 13 months old, this past December. We are currently working with a surgeon nearby at Children's National Medical Center in DC, he is going to do a reconstructive procedure to reinforce Isaac's vocal chords and work towards decannulation. I would love to meet other families going through this process or who have undergone it already.
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Old 04-07-2010, 10:58 AM
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JWorthington JWorthington is offline
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Join Date: Dec 2004
Location: England
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I have no experience of what your son faces, but it sounds like the doctors have done some great work so far. Just wanted to say welcome to the boards, you'll find a wealth of experience here. All the best
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14).
I am first and foremost a child
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Old 04-07-2010, 11:41 AM
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kadiera kadiera is offline
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Location: Troy, MI
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Welcome to the board. It sounds like you've got a great medical team working on things, which always helps.
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Janet, cruncy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia

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Old 04-07-2010, 11:46 AM
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Shylent Shylent is offline
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Location: Louisville,KY
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Welcome to the boards , looking forward to getting to know you !
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May Mommy to Sebastian(1-24-06), hardcore former 26 wk preemie, had and kicked butt of many issues, dealing with a few more , including autism. Trached 4/16/06 @ 3 months due to severe BPD and mild Tracheomalacia. Decanned 9-9-09 and doin' just fine !
http://sebastiansjourney.blogspot.com/
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  #5  
Old 04-07-2010, 12:02 PM
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destinyandmiracles destinyandmiracles is offline
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Join Date: Nov 2008
Location: Ontario
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Welcome! What an experience you have had!
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Mommy to Ashton. Former 24 weeker, now 5 years old! Ashton has severe cerebral palsy, severe reflux, g tube fed, legally blind, cochlear implant for hearing, undiagnosed cyanotic episodes and tracheostomy which was done in Dec 2009. The love of my life! Also mommy to an angel, Hunter who came way too soon on March 28th 2009 at 18weeks and 4 days.
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Old 04-07-2010, 01:20 PM
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lynn lynn is offline
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Join Date: Feb 2009
Location: Carnegie, PA
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Welcome! Sounds like you found some great doctors !! Looking forward to getting to know you !
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Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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Old 04-08-2010, 11:27 AM
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haltec haltec is offline
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Location: Cincinnati
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Welome! Look forward to getting to know you.
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Claudia - Mom to Sienna (4-22-07) and Sammy (12-14-2008).
Sienna was trached 9-27-07 for vocal cord paralysis. Right cord now moving.
Decannulated on 7-16-2008!
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  #8  
Old 04-08-2010, 11:43 AM
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Kate Kate is offline
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Join Date: Jun 2005
Location: Minnesota
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Welcome to the boards! YOu will find that this place is GREAT! Do you come to MN at all anymore? That's where we're from-though not Minneapolis.
Don't have any experience with your son's condition, but wanted to welcome you!!
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT!
www.caringbridge.org/mn/mitchelljohncragg

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Old 04-08-2010, 01:59 PM
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alizesmom alizesmom is offline
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Welcome and wow! Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel.

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Old 04-11-2010, 01:47 AM
LJ27 LJ27 is offline
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Join Date: Apr 2008
Location: FL
Posts: 9
Default Welcome!
If you "just stumbled upon this site" it was your lucky day! Cindy does a great job and everyone is very knowlegeable. I can't get on too often since I am my son's primary caregiver and it keeps me super busy. I have learned so much through this site that was recommended to us by the doctors and nurses at Miami Children's Hospital.
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