Search the web
Sign In
New User? Sign Up
noonan_support · Support Group
  • Members Only
  • Post
  • Files
  • Photos
  • Links
  • Database
  • Polls
  • Members
  • Calendar
  • Promote
  • Groups Labs (Beta)
? Already a member? Sign in to Yahoo!

Yahoo! Groups Tips

Did you know...
Want to share photos of your group with the world? Add a group photo to Flickr.

Best of Y! Groups

   Check them out and nominate your group.
Having problems with message search? Fill out this form to ensure your group is one of the first to be migrated to the new message search system.

Messages

   Messages Help
Message #
Search:
Advanced
Hello New here   Message List  
Reply | Forward Message #519 of 908 |
Re: [noonan_support] Hello New here

Hi Tracy, My name is Amanda. I have a one year old son who has noonan's. He has heart issues, which is PS, ASD, and LVH. He also has issues with swallowing, weight gain issues, and undecended testes.
Last summer my son was in the hospital for 4 months. He had intestinal lymphangectasia. Which was the first case they ever seen. The longer he was there the more they found wrong. He had about 10 surgerys during his stay. However they did nothing for his heart and now they are saying his heart is worse and getting worse by the day. He also needs surgery to bring his testes down because they say longer they are up the more chance it is that he can get cancer. But his heart doctors says he can go to surgery because surgery could kill him right now because his heart is that bad. He says Dalton need a new heart but he since he has noonans he will not be able to be put on the list for one. He even says he wouldn't even to surgery on his heart because of the noonans. So I am looking for a new doctor who will be willing to help.
I found that this group helps me out alot. Because I am a stay home mom and have no one to talk to and ever one really listens. If you need to talk I am here.
Amanda 

my2heartbabies <my2heartbabies@...> wrote:
Hello, I'm new here. I have two children with NS. A 3 year old
daughter, and 7wks old son. My daughter had open heart surgery to
repair an ASD and a few other problems with her heart. She has curly
hair, short hair line, feeding issues and weight gain issues,
behavioural issues, sleep issues. However, she is on the high end for
hieght for her age.

My son is having many feeding issues right now, slow weight gain.
Droopy eye lids, undecended testes, low set ears, and an ASD, VSD, and
PS.

I'm looking forward to meeting some people here, as we are going
through everything with both children.

My daughter will be starting school in September, hoping that the
transition into school will be successful.

Tracy




New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.
Tue Apr 11, 2006 2:48 pm

Show Message Option
dollgril0
Offline Offline
Send Email Send Email

Forward 		Message #519 of 908 |
Expand Messages Author Sort by Date

Hello, I'm new here. I have two children with NS. A 3 year old daughter, and 7wks old son. My daughter had open heart surgery to repair an ASD and a few other... 		my2heartbabies
Offline Send Email 		Apr 11, 2006
12:35 am

Hi Tracy, My name is Amanda. I have a one year old son who has noonan's. He has heart issues, which is PS, ASD, and LVH. He also has issues with swallowing,...
Amanda Springer
dollgril0
Offline Send Email 		Apr 11, 2006
2:48 pm

Hello Tracy, My name is Wendy. My daughter Morgan is 7 and she has NS. She had surgery to correct her pulmonic stenosis when she was 18 months. She also has...
Jim Moseley
morgidsmom
Offline Send Email 		Apr 11, 2006
3:56 pm

Welcome, and congratulations on your recent delivery! My name is Madeline and I have a 6yr. old daughter (no NS) and an 18mo. old boy with undiagnosed but...
Madeline mckee
mckeefamily1
Offline Send Email 		Apr 12, 2006
12:06 am

Hi Madeline..my daughter had her sugery last May she was 2 1/2. They had tried to repair the ASD through catheritzation the previous Jan, but it didn't work....
Tracy McIntyre
my2heartbabies
Offline Send Email 		Apr 12, 2006
11:50 pm

Hello, Im Katie, mom to 2 children. Jacob 3, probable Noonans and Kylie 2, who has Noonans. Kylie and Jacob show similiarities(sp?) so when we go back to...
Katie B.
andnowtheres2
Offline Send Email 		Apr 12, 2006
12:13 am

Hi Tracy, Welcome! - my name is Christina. I have a 15mo old son named Aaron. Last visit with cardiologist was told that he may have Noonans. We are going for...
Christina
red_lionfish
Offline Send Email 		Apr 12, 2006
4:38 pm
< Prev Topic  |  Next Topic >
Message #
Search:
Advanced
Copyright © 2009 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines - Help