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 highly probable NS.  He fits almost every mark, including the opinions of highly respected geneticists...but the blood work came back negative.  I guess that happens often.  How old was your daughter when she had her heart surgery?  How long was the recovery time?  We know Henry will need it at some point (between now and age 4...) and we are a bit nervous.  Well, thanks if you have the time to answer these questions...and again, welcome!

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