Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Tuesday, December 3, 2013

The Best Job in the World.

The Best Job in the World. 

I'm a special needs mom. I know what stomach juices drained right from the stomach smell like. I know how to change a feeding port right out of a belly. I've "slept" in firm backed chairs by hospital beds and told Dr.s they are wrong. I've witnessed the undeniable miracle of a baby that "won't" turning into a baby that does and does again. I've seen pain, I've planned goodbyes and thanked God they were only plans..... All of these things and many more are things I never imagined  I would do. Frankly, if you would have told me this is what life held 10 years ago....I would have run for the hills. There is no way to know until you experience it the unexplainable blessings and deep joy being a mom of a miracle can really bring. 
This job is not for the faint of heart. Sometimes it feels like a deep, lonely pit. One that just goes deeper with no end in sight.....Honestly, even though we are approaching year number 3 it sometimes still feels like the "newborn" stage. You know, the beautiful first couple months where you aren't sleeping, showering or thinking clear thoughts. During those months you hold your beautiful baby and hold on to the hope that "this too shall pass" and someday your child will be grown, independent and not needing much more than hugs, food and warmth. For us special mommas, we don't know if or when that will ever happen. We don't know if our children will ever not need feeding tubes and full time care. It's a hard reality to not know what your child's future holds. All you can do is hold on, drink coffee and continually remind your self that strength comes along the journey. I know that I was picked for a very special reason and that I do indeed have the best job in the world! 

" Do all things without grumbling or disputing, that you may be blameless and innocent, children of God without blemish in the midst of a crooked and twisted generation, among whom you shine as lights in the world, holding fast to the word of life, so that in the day of Christ I may be proud that I did not run in vain or labor in vain."

"Colossians 3:23-24 Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ."



  1. A mother of a special needs child is a special gift from God. We never know what our gifts are until met with a challenge such as this one. You and Case and your family are indeed special.