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...
Show off your group to the world. Share a photo of your group with us.

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
new member   Message List  
Reply | Forward Message #29 of 907 |
Re: [noonan_support] Lorraine

Hi,
My son Ryan 6 years old has Noonan Syndrome.  We are going to have our first heart surgery on December 6th.  He has Pulmonary Valve Stenosis as well as Wolffe-Parkinson-White Syndrome (WPW), I am very anxious about the surgery, he has had minor surgeries in the past but not with the heart.  My son is also hearing impaired, which I have found to be not a very common issue with Noonan Kids.
 
Wanted to know if any of your kids experience very very dry skin on the face and extremities.  My son has such dry skin, we have tried every over the counter and some RX lotions, (that were too strong and gave him a terrible burning sensation) but I have not come across anything that helps.  If anyone has any suggestions I would be happy to hear them.
    I want to welcome all the new members, and to let them know, though our kids may be on a different journey than 'typical' kids, and the road can be rough at times, they are still 'children' first, and with the support and love from us I am confident that they will become HAPPY, productive adults.
    Have a Safe and Happy Holiday Season.
    Debbie
    mom to:  Ryan 6-Noonan's
                  Tyler 11
                  Andrew 8-CAPD
                  Jayson 2
Tue Nov 16, 2004 6:22 pm

Show Message Option
debtar85
Offline Offline
Send Email Send Email

Forward 		Message #29 of 907 |
Expand Messages Author Sort by Date

Hi, My 7mth old son Bailey was diagnosed with noonans last week. It's a 2nd shock for us because he was also diagnosed with jmml (juvenile myelomonocytic... 		bailblue
Offline Send Email 		Nov 15, 2004
4:13 pm

Hi Lorraine, My 14 month old Zachary was diagnosed with noonans in mid-October. He also was diagnosed with JMML in October 2003. The doctors didn't think that...
Beth
ethansmom219
Offline Send Email 		Nov 16, 2004
2:17 am

Hi, My son Ryan 6 years old has Noonan Syndrome. We are going to have our first heart surgery on December 6th. He has Pulmonary Valve Stenosis as well as...
Deb Rabideau
debtar85
Offline Send Email 		Nov 16, 2004
6:22 pm

Hi Beth, I've just been reading Zachary's caringbridge page. I logged onto jmml webpage and saw one of your messages. How strange that you should be sending...
bailblue
Offline Send Email 		Nov 18, 2004
3:23 pm

HELLO, I RECEIVED YOUR LETTER THROUGH, BEING ON THE NOONAN WEB SITE.I TO HAVE A SON WITH NOONAN SYNDROME/ HEART DEFECT. I WANT TO KNOW MORE ABOUT THIS JMML....
Debra Finley
debrafinley777
Offline Send Email 		Nov 20, 2004
4:50 am

Hi Debra, JMML is juvenile myelomonocytic leukaemia. Children with either noonan's or jmml are more predisposed to getting the other we've been told. If your...
bailblue
Offline Send Email 		Nov 21, 2004
11:09 am

He sure is adorable! He doesnt look like alot of the "noonan" kids I have seen online tho....ya better watch out he will be breakin hearts lol ... From: "Beth"...
kwild1@...
idontlikethat2
Offline Send Email 		Apr 28, 2005
11:50 pm

Thankyou for your lovely comments about Bailey. Obviously being his mum I think he is sooooo gorgeous!!! Beth, if you could send me a pack that would be...
bailblue
Offline Send Email 		Apr 29, 2005
8:38 am

LOL he sure is! ... From: "bailblue" <bailblue@...> To: <noonan_support@yahoogroups.com> Sent: Friday, April 29, 2005 3:38 AM Subject: [noonan_support]...
kwild1@...
idontlikethat2
Offline Send Email 		Apr 29, 2005
2:34 pm
< Prev Topic  |  Next Topic >
Message #
Search:
Advanced
Copyright © 2009 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines - Help