My baby boy was born 9 years ago. He was the best Christmas Eve present a family could ask for. But the news we got Christmas day put these parents into a deep dark spiral.
He had something wrong with his heart, low set ears, webbed neck, coloboma, low tone and on and on and on. Finally they said Down Syndrome. We were scared.
The next 6 weeks were hard. It wasn't Downs but what was it??
Finally at 8 weeks we learned our boy has Noonan's Syndrome.
In the late 60's Dr. Noonan a cardiologist was seeing all these kids with similar features and some kind of heart issue.
The first two years were HARD. Would he roll over, sit, stand, walk, eat on his own, have severe learning disabilities, talk . . . He mastered everything with lots of therapy just a bit later than most.
Our boy has pulmonary valve stenosis along with a few other minor heart anomalies. At first we went to the cardiologist every month then 6 months then annually then every other year.
He never needed surgery though the thought was it was a matter of time until he would need a balloon procedure done.
Something AMAZING happened this year. God healed our boys heart! I just about fell over when the doctor said "Somehow????? his heart is functioning like a normal heart" WHAT!!!! YEP!
You see kids with Noonan's syndrome have a heart issue FOREVER They just do.
God is Good!!
We heard this WONDERFUL news a few weeks back. Getting to walk this journey called life with my boy is beyond a blessing. Words just don't do it justice.
Thanking God for introducing us to the world of Special needs kids. I wouldn't be the same without him.