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Our first child, Madilyn Grace was born Aug. 9, 2009 at 38 weeks at 4 lbs. 10 oz. and 17 inches long. She was small but perfectly healthy. We took her home two days later. Every time she fed, milk would come out her nose. Her pediatrician said it was normal. I knew it wasn’t normal. At least half of what she ate came out through her nose every feeding until she was about 6 months old and then it decreased and eventually stopped. She had an umbilical hernia but it closed up on its own. All her wellness visits she got a good evaluation until 6 months. She only weighed a little more than 8 lbs. and wasnt sitting up at all. Her pediatrician referred us to a GI doctor and an endocrinologist. The GI said if she didn’t gain weight she would need a feeding tube. Thankfully she began gaining weight on a new formula and never needed a feeding tube. He then referred us to a geneticist. At 8 months of age we got her diagnosis. Then we were referred to a cardiologist and to get a kidney u/s just to make sure everything was OK. She has a right sided aortic arch and vascular ring but otherwise heart was fine and kidneys were normal. She had a chronic cough for about a year that was diagnosed as allergies, croup, virus, asthma, etc. but turned out to be because of the vascular ring constricting her airway so she had surgery in March for that and the cough is gone. She sat up at 9 months, crawled at 11 months and walked at 14 months. She will be 2 next month and though she says a handful of words we are concerned with lack of speech so we are going to have a speech therapist evaluate her. We have an early interventionist come every week that helps alot. Her health problems have been minimal so far but we dont know what the future holds. Today she is a vibrant, energetic, smart little girl. She weighs about 22 lbs. and eats like a horse. She attends daycare four days a week and all the other kids love her. She runs around with them like she is their size. She is very independent and determined. She loves books and will sit and “read” them on her own. Everyone always comments on how smart she is. Even though she doesn’t talk a lot she understands everything we say and her receptive language is ahead of her age. We love her very much and cant imagine life without her.

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