Hello Amanda, What all is wrong with Dalton's heart. My daughter has pulmonic stenosis and she had corrective surgery when she was 18 months old and she is...
Hello, regarding Dalton, I to have a son, who is now 22yrs old. I to had been told to enjoy him while i could. I feel we as parents know in our own hearts ,...
Wendy - Sorry to intrude in this discussion. My son also has pulmonic stenosis. He is going to the cardiologist on the 24th. we are demanding he stop...
The cardiologist says there is nothing he can do and my son will not make it to much longer. So I am going to go see him one last time on the 23rd, with my...
Don't give up!! I feel the same about my son ... if the cardiologist wants to keep on waiting, then we will go elsewhere. I pray for your son all the time. ...
Maria, Morgan is now 7 and she is still really small. She currently weighs 42 lbs and she is 40 inches tall. Her growth pattern has pretty much stayed the...
Amanda, You are the only one who can fight for your son and I know you are going to do everything that you can. Why can't there be anything done? Morgan's...
Well on Friday (Feb 24th) we are taking Logan back to the cardiologist. When we go we are demanding that he stop waiting till Logan gets bigger (especially...
Maria, I want to give you some advice about having surgery for Logan. When Morgan had her surgery we were told that if you needed to have surgery that...
Maria, I'll be thinking about you, i hope every thing goes to plan.Connor had a catherterisation done for his pulmonary stenosis and i do believe it sorted...
My thoughts and best wishes will be with you, and I will be curious to see what your doc says...our little Henry is in a simular boat...can't gain weight, much...
Thank you for your thoughts. I understand the frustration you feel. The best is that the doctor would never give me a target weight no matter how many times...
Did you find that Conner grew better after his surgery? Also did you find it help with his overall strength and development after it was done? (I know that...
He did gain strength after his heart op. i think that most of his problems were that he didn.t have a very good imune system and he always seemed to catch...
MARIA, I FEEL YOU ARE 100% RIGHT IN WHAT YOU ARE DOING...WE AS PARENTS HAVE TO DO WHAT WE FEEL...WE ARE THE ONES THAT REALLY HAVE THE CONNECTION WITH OUR...
Hi Everyone, I couldn't remember who got the first email. I hope I didn't miss anyone. I have been a bit drained emotionally since coming home Well today was...
Hi Maria, I just had to say that I think Logan is adorable! Also, Zack has the same pj's...ha ha! I'm sorry to hear how bad that appointment went. Sometimes...
Maria what a wee darling Logan is,hang on in there and keep to your guns.Discuss and tell doctors and nurses your feelings before they proceed to do any thing...
Hey! Sorry to hear the appointment didn't go so well. My appointment was on the 23rd. They didn't do an echo with Dalton. The doc said since we did one two...
No Logan is not on any medications. Sorry to hear about your son. I don't know why his having Noonan's would make a difference. Sometimes I can't stand...
Hi Maria, Just thought i would pipe in. My son had 4 surgeries this year. 2 catherizations and 2 open heart to repair his stenosis and some ASD's. He is tiny...
Thank you Christina for your insight...I too have been wondering if our boy would suddenly put on weight if they sped up his surgery. Henry weighs 15lbs. 8oz....
Hi, gosh, I'm so sorry that things went so wrong at the doctor's. Logan is beautiful...what a smile! Henry had to go to the doc's today...eye infection...
I am not expecting a miracle growth spurt once he has his heart fixed. What I do know is that I have a very active 21 month/ 18 month adjusted toddler....
Hi Madeline! My son is 15mo and is 18lb 14oz. He is not even on the chart but his cadiologist (thank god he is the most wonderful doctor on earth) was very...
Thanks for the response...sounds like our cardiologist is thinking that we might want to speed up Henry's planned surgery. He gets so tired doing things like...
Hi, My name is kris and my daughter Nicia is 7. We were on growth hormone for two years...we took her off of it. Here is my opionion. The doctors said that the...
Hello everyone, My name is Jenni and I am new to the group. I have an 11 month old son (Lachlan) who last week has been diagnosed with NS. I would love to...
Hello, and welcome to the group. My name is Madeline and I am mom to Henry, 18mo. NS and Bella, 6yrs no syndrome. It sounds like you have done a lot of work...
