Clayton

  • Clayton was born on february 14th, 2006 in Ft.Myers, FL. He was born almost 6 weeks early weighing only 4lbs, 4ozs and only 17 inches long. The first thing I noticed was his big beautiful, wide-opened blue eyes, but then my heart sank when I didn’t see his face move, he was crying, but it just didn’t look like it. But soon I was reassured that yes, he was crying and breathing on his own. They put him on some oxygen for maybe 6 hours just to be safe and put him in the NICU where they started all the tests… First they told me that they thought he had Down Syndrome due to his jaw and ears… I looked at him like he was crazy, because I knew that wasn’t it. After the blood-work ruled that out, then a pediatric neurologist came in and examined him and at only 2 days old, he was diagnosed with Moebius Syndrome.

After doing some researching about this disorder, I realized it just didn’t matter, he would live a “normal” life and so what if he can’t smile, he was still the cutest little boy I had ever seen!
After about 19 days in the NICU, we finally found the right nipple (the pigeon feeder) that would allow us to take him home and feed him with a regular bottle, just a different nipple… they had said about a week before that that we could take him home with a feeding tube, but we said absolutely not, we worked with him until we both figured out how to feed him.

Now, at 2 and 1/2 years old, he is finally walking on his own, but doesn’t talk too much. He only has a couple phrases, but he is so smart! His receptive language is great and he does very well in speech, occupational and physical therapies. He never ceases to amaze us. He can laugh and cry, he can’t smile but you can definitely tell if he’s happy or sad.

Recently at the Moebius Syndrome conference, he was evaluated and diagnosed with the Autism disorder… I’m not too sure what to believe on this one, because they based this on his social behavior at the conference, which he was very shy and nervous around new people, but i’m not sure what 2 year old doesn’t portray that kind of behavior… who knows, only time will tell I suppose! All I know is that we love him with our hearts and he is the coolest little boy I have ever met =)

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