Blink of an Eye: Bath Boy

Friday, March 30, 2012

Bath Boy

Noah has recently discovered laying on his tummy in the bath. For a little boy who used to have a trach...this is pretty HUGE!

He also loves to paint with colored shaving cream. Perhaps a Monet in the making...

Lately, Bubs has taken to running around with his hoodie towel on after getting out of the bath. He likes to pretend he is Superman...but I think he's more like a streaker!

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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.