
KellyandAndy Rackley
Hello...My name is Kelly and my husband is Andy...My son Peyton was born July 2007 with tef/ea...He is still on stage 3 baby foods and can eat crackers or vanilla wafers smashed up..he does love juices from peas or spag sauce...He only says a few words and is not potty training yet...He is supposed to be starting half ...day at day care on Monday(if they will take him not potty trained). Im excited and nervous all at the same time...Are most kids with this slower to develop then others....we have NEVER had anyone to talk to who is going thru the same thing so it is GREAT to find this on facebook.Read More

Laura Zander
Other than the EA/TEF Family Support site (which was our first stop) I also came across the UK TOFS (http://www.tofs.org.uk/) which might be helpful to some of you as well, they have free leaflets in the downloads section of their website that you can print and give to family members, teachers, etc. Their FB group - http://www.facebook.com/group.php?gid=10 2417219682
Source: www.tofs.org.uk
TOFS supports the families of children born unable to swallow. TOFS stands for Tracheo Oesophageal (esophageal) Fistula Support.

Heather Grigoriadis
I am SO happy to find this group! My son, Alex, was born with EA/TEF Feb 26, 2009 at 34 weeks because he is a triplet. Very sadly, his identical brother was stillborn. Alex was repaired when he was 5 days old, spent 6 weeks in NICU, and we haven't had to do any further procedures since, but are battling with severe ref...lux. He is getting too active for the recliner chair he's been sleeping in for months and we don't know what to do now...does anyone have suggestions on what to do to elevate an active 8 month old?? Just elevating the mattress doesn't seem enough to me and we are so scared to damage his esophagus with the reflux. It is hard enough to get him to drink the bottle...thank you! I am really looking forward to sharing and learning with all of you here!!Read More

Laura Zander If your newborn is currently in the NICU and would like to find out more about complimentary NICU photography services in your area visit http://www.picturesofhopefoundation.org
Source: www.picturesofhopefoundation.org
Please contact the Pictures of Hope Foundation at info@picturesofhopefoundation.org with any additional questions or comments.

Mindy Ferris-Glasscock
Hello!!!! I am so glad to see the EA/TEF Support Connection on Facebook, and look forward to talking to other parents going thru the same situations.
My Son, Ryan, was born with EA/ TEF Type C in September 2005, Dallas Texas .

Meredith
Does anyone live in northern Illinois? My daughter would love to meet another child that has gone through the same as she has.
She's 9.
Email me if you want. THANKS!
Meredith

Meredith
Hi all!
Happy to see everyone on here. My daughter was born with TEF/EA among other things and she just turned 9! She is so mature from having to learn so much, so fast!
Please feel free to email me or add me as a friend if you have any questions! I'm sure we all have our days and would really love to talk to someone that truly understands!!
Hugs to everyone!

Janell Wiesler
Hi, so glad I found this support connection! My daughter just turned a year old and was taken from me right after delivery for observation. Turns out she had tef and had to have surgery. After 2 weeks in the NICU she was able to come home. She is still on stage 2 foods and we are having trouble trying to figure out wha...t she can and cannot have to eat. She only has a half of tooth on the bottom so she gets very frustrated.. sorry for the rambliing, just had to let that out to people that actually knew what I was talking about!Read More

Bernadette Hi, glad to have found you all. My son William (one of BBB triplets) was born with EA/TEF on July 27th 2004.

Amy Hello, I am excited that I found this facebook! My son is 11 years old, and was born with EA/TEF with severe trachia malacia. For all the new parents, grandparents, siblings, or just loved ones, please feel free to contact me, I am a research MOM, and have been down a long road! I can't wait to see everyone's story, and wish everyone a great day!

Samantha Johnson My son is three months old...has had a bad cough for about 2 weeks...thought it was an upper resp infection..so did his pediatrician...the breathing treatment is making his cough worse...I am now thinking he has either relfux or needs a dilation...anyone have any experience with a persistently bad cough??????

Aimee Flint Salyer
My son was born on May 19th with EA/TEF type C and after a 12 day stay in the NICU was sent home and has been doing great. We have not needed any dialations yet.
My major concern is that I plan on starting him on solids in a months time and am scarred to death of him chocking on food. If he is going to have trouble wit...h eating will this most likely be evident from his first feeding? Would people recommend me bringing him in to see his pediatrician or should I try and get him in to see his surgeon if he is having trouble?
Any advice on solid feedings would be greatly appreciated.
Thanks.Read More
My major concern is that I plan on starting him on solids in a months time and am scarred to death of him chocking on food. If he is going to have trouble wit...h eating will this most likely be evident from his first feeding? Would people recommend me bringing him in to see his pediatrician or should I try and get him in to see his surgeon if he is having trouble?
Any advice on solid feedings would be greatly appreciated.
Thanks.Read More

Erin
Hey everyone,
has anyone had Mitomycin-C used to help with scar tissue on/in the esophagus?? My son Philip has had 2 apps with no improvements:(
This will be his 14 dilatation. We have been going every two weeks since June. HELP!!!

Yu Marie Ciel Remitar Best wishes for good health for everybody... Because i know, it is an emotional and financial bagages for parents and close relatives seeing patients with such case...
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EA/TEF Family Support Connection discussed Claudia: Her Surgeon's View on the EA/TEF Family Support Connection discussion board.









