Hi, I am wondering if anyone could share with me their info on slow weight gain. Henry is now 21 months and still only weighs 15lb 7oz. He has recently gone...
Hi my son Connor was very slow to gain weight.He is now 12 years old and is still struggling to put weight on.Connor has been to see the dietitian on and off...
Thank you so much for your feedback. I feel a bit overwhelmed when the specialists at one of the best hospitals in the Northwest says, "Well, I don't know...
Hi Madeline! My son Dalton was having a hard time gaining weight when I brought him home. He was on the NG tube. He was put on a 30 cal diet. But when ever I...
Did you know that premature birth is the leading cause of newborn death in the first month of life? It affects half a million babies a year in the United...
Hi there everyone. My name is Kim and i live in Melbourne Australia, my son bailey was born with Noonans syndrome and has all the characteristics of Noonans ...
Hi Kim, My son Jack (17 months) also has a heart murmur. His is very minor and does not require surgery. In fact, many people have heart murmurs that do not...
Hi Kim, My daughter, Kylie, has pulmonary valve stenosis and atrial septal defect. For her PS it was not mild it was severe(she had 75% blockage) and she had...
Hi there, thankyou for your very quick reply, as i have stated, i live in Melbourne Australia and althought the geneticists here are extremely helpful i...
Hi there, thankyou for your very quick reply, as i have stated, i live in Melbourne Australia and althought the geneticists here are extremely helpful i...
Hi there, i am a new member, Bailey my 3 and half year old has noonans, i live in melbourne aus. He is very agressive and hyperactive, he has speech...
Hi Stacey, Your email was beautiful, it has given me positive hope. thankyou, i will continue waiting and think of the positives that you have given me. ...
Hi Kim My name is Bob and I am up on the sunshine coast Queensland. My Daughter Leonie is 13 and was diagnosed with Noonons at birth; she had a suspected heart...
Hi Everyone! We are newbies, but not to the snydrome: My name is Marsha, my lil man Johnathan has Noonans. He is 13 years old. He was dignosed at birth. I...
Hi Bob, wow thats great that someone has replied from Aust! Please tell me all about your daughter, as i still have days of denial and worry and i am very...
HI, My heart really goes out to KIM AND Bailey, this just my opinion, and it is very hard. please try not dont panic, Not all pulmonary valve stenosis,can be...
I am only sending this to a handful of people (or in some cases support groups) .... I need to admit that there are days that I really struggle with being...
Hi Kim, Yeah, unfortunately Kylie does seem to get sick alot. They say it is because of her having a weak immune system. I will let you know how everything...
Maria, We have all been there.its hard. Nicia my daughter is 7.we went to a restraunt the other day and had my 3 year old step daughter and my daughter nicia...
No I don't think you are a bad mommy! When I start to feel that way I look at Dalton and see him playing and see him smiling, then I see how happy he is. Then...
This is Amanda mommy of Dalton. Dalton is 15 months old. How do I get him to drink from a sippy cup? He is still on the bottle. He has 8 teeth and I am scared...
Hi Kim Glad I got through, message was returned. My email is daddi@... Leonie is 13 and although delayed has spent her time at main stream school with...
Maria I think that we have all been there at one time or an other.There is no shame in feeling the way that you do, after all no one is ever prepared for a...
Hi Amanda, Have you tried the Nuby Sippy Cups? You can get them at Target, WalMart and Kmart Ive seen them at. These seem to be the only sippy cups Kylie loves...
hi, Bob, group, Writing for Johnny is the same way, one word right into another, The school and I use a tringle or the big pencils and to help him space words...
HI, I have also noticed people staring at Johnny, it really depends how they look at him. Most of the time I tell him noone is perfect although many people...
Hi Laura, Welcome! My name is Christina - my son is Aaron. He just came back positive for Noonans. The testing is actually very simple - prick of the finger...
Well, today both kids were seen instead of Kylie as usual. Instead of doing the DNA swab test like they did for Kylie they decided to do blood work and Kylie...
Hello, My daughter Morgan is 7 and has NS. We just moved from Texas to North Carolina and before we moved she was diagnosed with Subglottic Stenosis. This is...
