Our Story

Dylan was born on April 8th, 2005 - Weighing 8lbs, 1.2oz. He scored 9 and 9 on the apgars. He was perfect! It wasn't until day 2 in the hospital that they discovered he had a soft palate cleft (an opening in his soft palate, his was split into a "v" and he did not have a uvula - the little punching bag in the back of your mouth) They explained that this was the most common of birth defects and that he would probably need a repair but would otherwise have a normal life.

He came home with us on schedule despite the fact that he wasn't eating well because he couldn't get good suction. He lost weight and we were in for several doctor visits in those first few weeks. We had to syringe feed him to get his weight up and then use a special squeezy bottle to assist him. Other than this slow start he was meeting milestones on time (other than getting his teeth late)in his first year. But when he turned 18 months he was still not walking and any words he did have were lost.

We wanted answers and started with tons of genetic testing, he had an MRI and mitochondrial testing, celiac disease testing... all with normal results. All that they could tell us was that he was a little low tone (hypotonia) but they couldn't tell us the reason. Hypotonia is a condition that is typically the result of an underlying cause.

I did my own research and found that Dylan's symptoms and delays were all very common in Autistic children. BUT Dylan was social, he made eye contact, he liked being close to those he loved, he had likes and dislikes, etc. He smiled and laughed all the time and appropriately. Even with all of that we couldn't ignore the similarities so we decided to make our first DAN! appointment.

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