Blink of an Eye: On the Road Again

Wednesday, February 9, 2011

On the Road Again

We're heading back to Packard Children's Hospital at Stanford today. Our MOST FANTASTIC Otolaryngologist will be taking a peak down Noah's trachea to see how it's healing.

It's...an early morning, a three hour drive, the monotony of pre-admitting, the fun of waiting through the procedure, the joy of the recovery room, followed by the anticipation of another three hour drive home...after he's alert and responsive...after he's deemed fit...after he is able to eat without vomiting...after all the tests have been done...after all the results have come back...after...after...after...

Sigh...{breath}

We're hoping to get some answers why Noah is having such a hard time breathing through his nose/mouth as well as why he's been so sick the past few months. Answers would be great...but...we're not holding out for them. We know how unusual Noah's condition is and how much patience is required to be his parents. Answers are good, but we're trusting that God has a plan for our Bubs. A plan that far surpasses our understanding.

This adventure has been, and will continue to be, One Wild Ride! We know that in the blink of an eye, it will all change...it will all be over...and we are holding on to what God has entrusted to us. Children truly are a gift from Him, and we are merely here to nourish what has been given to us. Though this road is bumpy, God has given us All Terrain tires. We're eager to learn what He has planned for our family.

8 comments:

DebbieFebruary 9, 2011 at 6:51 AM
My heart and prayers are with you. I'm praying for comfort, answers, peace, progress, and safe travels. Take care.
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MelissaFebruary 9, 2011 at 7:39 AM
Yes, my heart and prayers are with you, KC and Bubs. We love you guys and must tell you that you guys are exceptional parents...EXCEPTIONAL! Noah couldn't have been placed in any better hands. Loving God like you do will continue to give you the strength, courage and love you need to make everyday a day full of love...and that's what you guys do so amazingly well...LOVE each other :)xoxo
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AmyFebruary 9, 2011 at 11:42 AM
We will be thinking of you and wishing you patience, cheer and strength on this adventure and sending you all loads of hugs and love.
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rangertmldrFebruary 9, 2011 at 1:59 PM
Don't forget the four wheel drive, and lockers front and rear...and the winch...which you hardly ever use but its there when you need it. Sort of like family...with more grease. I miss you guys give N Stone some lovies from us. Let me know when you want some company four wheeling;-)
Adam
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Betty SmithFebruary 9, 2011 at 2:51 PM
Thanks Rebecca, I needed that. Adam you know exactly what to say. I love you guys.
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RuthFebruary 9, 2011 at 7:35 PM
I have never seen parents with more grace than you two possess; amazing grace under pressure. Surely a gift from God to go along with the wondrous responsibility of raising Noah.
Wishing you safe travels and positive outcomes.
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Sue--PHXFebruary 10, 2011 at 12:53 AM
God be with the 3 of you on your trip and may He give you some GREAT news.
Love to a wonderful pair of parents and their little man!
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CynthiaFebruary 10, 2011 at 2:49 PM
Our prayers are constantly going up for you 3! My prayer for my grandchildren have always been that they will all walk in the good works God has prepared for them from the begining. That they will have hearts to love and follow the Lord fully all the days of their lives. Lord bless you dear ones. May good health come your way soon dear Noah. We know one thing, anything from God is always GOOD! I'm blessed that all our family are Christian!
Love, Grandma Cindy
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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.