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In addition to this Caring Bridge site, I have also started a blog page for Luke. For more frequent updates on Luke, you can visit his blog at www.lukejosephsnyder.blogspot.com

Welcome to our sweet little Luke's Caring Bridge page. It has been a wonderful way to keep our family and friends updated on Luke's progress. The support we have received through this website has been amazing and we have been touched forever by all your thoughtful words and prayers. Someday Luke will know just how many people care about him and what a special little boy he is. Please continue to sign Luke's guestbook when you visit. We love to hear from you. Don't forget to visit Luke's blog for more frequent updates.

"You are more perfect than we could have hoped, more beautiful than we could have dreamed, more precious than we could have imagined...
...we love you more than we could have known."


Luke Joseph Snyder

Born: November 25, 2004

Weight: 5 lbs. 4 oz. Length: 18 3/4 inches

Luke decided to surprise us by arriving a month early on Thanksgiving instead of Christmas. But the surprises didn't stop there. Luke developed respiratory distress shortly after birth and spent the next 3 months in the NICU. In those 3 months, he overcame sepsis and pneumonia caused by a life-threatening infection called Group B Strep and underwent five surgeries; two to repair a defect of the nose called Choanal Atresia, one to place a G-tube in his stomach for feedings and a Nissen Fundo to prevent GERD, and two to diagnose and treat Laryngomalacia (a floppy, swollen larynx). Luke continued to struggle with respiratory problems and obstructive sleep apnea throughout his entire NICU stay as well as after he was home. It was later discovered that he also had Laryngeal Stenosis (scar tissue and narrowing in his airway), caused from having a breathing tube, also adding to his breathing problems. We finally brought Luke home at three months olds weighing just over 8 pounds. Along with Luke came monitors, oxygen, suction equipment and feeding tubes, but only a small price to pay to have Luke here with us.

Luke has since then been diagnosed with CHARGE Syndrome, a complicated condition causing many medical and physical problems, especially in the first few years of life. Each letter of CHARGE represents a problem each child may or may not have. The problems can be anywhere from mild to severe and each child is affected differently. For Luke, having CHARGE causes problems with his airway and breathing, swallowing/aspiration, hearing, balance, low muscle tone and sensory problems, which all create developmental delays. Luke also struggles with with poor eye contact and attention difficulties. Many kids with CHARGE have "autistic-like" tendencies. Luke has very small Colobomas (clefts in the eye) on both sides, but due to their location in the eye and their small size, they shouldn't interfere with his vision much. Luke has been very blessed to not have the major vision and heart problems that can go along with CHARGE. Even though most CHARGE kids have a rocky start, their problems tend to improve over time. We believe that Luke has a lot of potential and we are anxious to see him eventually do many of the same things other kids do.

After battling worsening obstructive sleep apnea and recurring pneumonias, and with the advise of our ENT doctor, we decided that Luke needed a trach. Luke got his trach on Nov. 1, 2006. This was Luke's 10th surgery. Both surgery and recovery went really well. We have no regrets. The trach has been a huge blessing in our lives. Luke is finally able to breathe and sleep the way a two year old is supposed to. Hopefully within the next couple of years we'll be able to get the trach out after some of his breathing and airway problems improve, but for now it's giving him much needed relief from his struggles to breathe.

It's been a long road so far with many ups and downs but we are so thankful and blessed that we have our Luke with us in our lives. He always manages to melt our hearts with his big brown eyes and his beautiful smile. Please keep Luke in your prayers so that he'll continue to get better!!

A poem to Luke from Mommy...

I loved you from the very start,
You stole my breath, embraced my heart.
Our life together has just begun
You're part of me my little one.
As mother with child, each day I grew,
My mind was filled with thoughts of you.

I'd daydream of the things we'd share,
Like late-night bottles and Teddy bears.
Like first steps and skinned knees,
Like bedtime stories and ABC's.
I thought of things you'd want to know,
Like how birds fly and flowers grow.

I thought of lessons I'd need to share,
Like standing tall and playing fair.
Each day I see your precious face,
I pray your life be touched with grace.
I thank the angels from above,
And promise you unending love.

Each night I lay you down to sleep,
I gently kiss your head and cheek.
I count your little fingers and toes;
I memorize your eyes and nose.
I linger at your nursery door,
Awed each day I love you more.

With misty eyes in soft dimmed light,
I whisper, "I love you" every night.
I loved you from the very start,
You stole my breath, embraced my heart.
As mother and child our journey's begun,
My heart's yours forever my little one.

"I Love You Luke"

Journal

Wednesday, January 9, 2008 8:34 AM CST

How the time flies... our big boy will be 4 soon! He is now a school boy... attending ECSE preschool four mornings a week. He loves to go to school and is doing very well, however some days his tolerance doesn't hold up and he gets a little tired of following the school routine. He is also developing quite the little personality, becoming a little more stubborn the older he gets and quite good at expressing his stubborn side too. He knows what he wants and doesn't want and has developed little tempermental (but cute) ways of communicating his wants. We are still working on signing and communication, with not much luck so far, but hopefully persistence will pay off. He is becoming very efficient with his walker and seems to be getting closer to independent standing and walking. Overall, his health has been good, although we always realistacally prepare ourselves about this time of year for what the winter months might bring. Our goal is still to get the trach out... maybe within the next year or two??? Luke has not made much progress with coordinated swallowing yet (he is still aspirating some) so he is still completely fed by g-tube, however he has developed quite a curiosity about food and eating. He will even put a spoon to his mouth to taste food, but only once or twice and then he's done. Ice cream seems to be the favorite. Luke is scheduled for surgery for a Laryngoscopy/Bronchoscopy (routinely done every 6 months to check his airway) and a Parotid Duct Ligation with Excision of Submandibular Glands, which is a very technical term for the removal and tie-off of saliva glands, to reduce oral secretions, therefore reducing aspiration. Well, I don't know if anyone out there still checks this website, but if so, thank you for still thinking of Luke, and don't forget you can visit his blog at www.lukejosephsnyder.blogspot.com
to keep up on all the little happenings in Luke's life from day to day to day!



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