Noah
has been working with his OT for the past several months to drink from a
straw. Do you know how hard it is to teach someone to suck? Let me tell
you, it's very hard! Noah never really learned how to suck as a baby.
Today, I filled Mr. Man's cup with juice
and he promptly started to cry. He wanted the "rectangle cup". After
quite a bit of time trying to figure out which cup Noah wanted, Kc
suggested that he might want a juice box. I handed my stubborn, crying
child the juice box and waited for the frustration to swell as he tried
to drink the juice. I rolled my eyes and gave Kc a knowing glance. I just knew this was going to end in disaster.
Well...to my utter astonishment, Bubs put the straw in his
mouth and took a big swallow.
What?!? When did he learn how to do
that???
Noah proceeded to drink TWO juice boxes today.
This boy continues to surprise me on a daily basis.
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.
Woo hoo!! That's so awesome :) way to go Noah...mommy's like to be surprised...it keeps us on our toes ;)
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