Noonan Syndrome (NS)
Support Group Introductions
Cindy (as at 5/97)
My name is Cindy & I have son with Noonan's. His name is Sky. A little history. He was born 8-21-94 at 30 weeks after I was diagnosed with polyhydramnios. He was sent to the NICU where he was diagnosed with Noonan's within the first week. He spent 4 weeks on a ventilator. Had a brain hemmorage which caused hydrocpehalus, he was placed with a shunt for that. His heart started to swell, his ventricles became enlarged & he developed a coartation of his aorta.
He had that surgically repaired at age 4 months. He had 4 shunt surgeries due to leakage. It was replaced it has been fine ever since. We had a very exciting first year & are glad to say his 2nd year was not nearly as exciting. He is small is about a year behind developmentally . He doesn't eat well, takes a bottle great We're still working on the cup full time. He eats pureed food & soft solids. We go through spurts. For a while he eats real solids but has regressed back to purees. He receives OT,PT & ST. He doesn't walk alone, but can stand & walk with assistance. He is just starting to be verbal knows his alphabet & can repeat it or point & say the letters. He knows sign language to communicate what he can not verbalize. Feel free to email me
Cindy
Mother of sky 2.5 years old. Noonan's syndrome, hydrocephalus, cardiomyopathy, developmental delays
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