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This is Jill Thursdale Owatonna, MN USA
Our son Dylan was born with NS even though we did not find out until he was almost 2 1/2. Dylan has had a multitude of problems since birth. To start - I was 26 when I had him. He was our first child and he ended up staying in the hospital a few days longer because of several things. The doctor noticed he had low muscle tone, poor feeding ability and a heart murmur. After circumcision the doctor also noticed he had megameatus.
A week later we found that he had a significant VSD and a small ASD. They attributed his poor feeding to being tired because of the VSD. He had open heart surgery when he was 3 months old and came through fine. His feedings did not get better and by 9 months old I was force feeding him with a medicine dropper. He was also vomiting alot. We opted to have a g-tube placed. At age 10 months we also had the megameatus corrected. The g-tube helped ease our worries about his weight and nutrition but the vomiting continued.
He is now 5 and going to kindergarten. He absolutely loves it and is very social. He does have low muscle tone that he has had therapy for. He also has strabismus in both his eyes. We have had surgery twice for this but it has not been completely corrected. The vomiting has stopped - we are not sure why - probably a combination of things. He is able to drink pediasure on his own now so we are having the tube removed in the spring. He has been having eating therapy for 2 years now and does have the ability to eat. However, he does not choose to eat much yet. Small steps! He is doing great but we did find out recently that his heart (which was doing well after the surgery) now shows that all 4 valves are thickening. This is scary but we will be monitoring it. It has been a roller coaster ride but one that is well worth it and as he gets older it does get easier. The first 2 years were really hard. He now has a sister who is 2 1/2 and is completely healthy. Dylan's NS seems to be a spontaneous form and we are waiting on the new gene mutations tests to come back to see if Dylan has one of them.
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