Blink of an Eye: First Bites

Sunday, November 9, 2014

First Bites

Miss Ava had her first solid food yesterday. We started with sweet potatoes.

She was very interested in what I was doing and continually grabbed the spoon in my hands.

My Sweet Baby Girl was not a fan of food in her mouth. There was quite a bit of spitting, tongue thrusting, shuttering, and mouth closing going on. It seems as though we have a lot of practicing to do.

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The Story

Our son, Noah Stone Jackson, was born with a very rare genetic disorder called Fraser syndrome. Among his many challenges are one “hidden eye”, a narrow trachea (which required him to have a tracheotomy), an imperforate anus (which required a colostomy), difficulty swallowing (which required a G-Tube for feedings), the fusing of his vocal chords (which means he may never speak), and club feet (which are being corrected with braces). Our family is on an amazing journey together. We are learning to walk along this path that God has planned for us, trusting in His infinite love and wisdom. We are taking each day (or each moment) as it comes and relying on each other, our friends and family, and our God for strength. We have a long road ahead of us filled with several more surgeries, lots of recovery, countless hours of therapy, and many trips to specialists around the state. Every day brings us challenges but they pale in comparison to the smiles and cuddles from our little man. Noah is our son, a true gift from God, and we cannot wait to see where this adventure leads.