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Cayden Jai


Cayden Jai was born three weeks early weighing 5lbs. 10oz. He was my first son! I was so excited to meet him. When he was born he had some trouble transitioning and some breathing problems but recovered quickly and never had to see the inside of the NICU. I thought my baby boy was precious but looked a little different than I imagined. He suprised us with his red hair (from my side of the family. Dad and I both have dark hair). I thought that might be it but I couldn't quiet put my finger on it. When Cayden was about 4 months old I asked the Dr. about his head being small and flat in the back and was reassured that it will round out and we could talk at 6 months about a cosmetic helmet if it didn't.

I knew something was different. Friends and family would comment on his face and how he looked like a little old man. I was already sensitive about my boy with red hair. Our doctor went on maternity leave and Cayden developed an ear infection (one of many to come). We saw a [different] doctor who we thought would tell us our son had an ear infection but instead asked us if anyone had talked with is about CdLS. He proceeded to bring in a book and show me pictures of other children with CdLS. Right then I knew that is what Cayden had.

I was relieved we had a start to an answer but crushed at the same time. So many questions filled my head and his dad was denial that his son had anything wrong. It took 6 months to get an appointment with the genetic counselor and he was officially officially diagnosed at 14 months. Cayden did meet the milestones but just at his own pace. We started physical and occupational therapy and two months later Cayden took his first steps. Speech therapy followed a few months later. Today Cayden is two, turning three in February. He lights up my world everyday with his big blue eyes and captivating smile. He runs and jumps and plays with all the other two and three year olds at preschool. Although he is a little behind on speech we communicate through sign language and some basic words and one to two sentences. My favorite is when he says I love you - his only three word phrase as of today.He is an incredibly smart and ornery at times, we love him and can't wait to see him grow and develop into the little person he will become.

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