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.

Monday, July 9, 2012

A Very Special Provision.

These past two weeks have posed a few minor challenges. It seemed like as soon as one thing worked out some other problem came up. Shortly after I accepted the thought of a GJ the crazy insurance battle began. Friday it seemed the insurance battle was fizzling down and surgery is on for tomorrow then soon enough Case's pump broke. Completely and out of nowhere. We were camping and with bad service so Case went a little while without food. Once I did get home and called Chartwell (the feeding supply company), I wasn't sure if they would send one cause Case's insurance is still working on covering them. Well, they came to the rescue (again) and sent him a new pump no problem (I love them). That happened yesterday. I was talking to a friend a few hours after that was resolved and said, "Sometimes it seems like I can't catch a break. Like it's one minor bump after another." Sure enough, not an hour after I said that the gigantic tree infront of our house cracked and fell. It stormed all of 10 minutes. The tree ripped down the power lines knocking ours and surrounding block's power out. But something crazy happened, our Jeep that was parked under the tree somehow went without a scratch. When I saw that it was like a message. He won't give me more, more than I can take. He might make me bend (and bend and bend and bend again) but he won't make me break. How glorious He is. To push me to my limits then push me more. To show me what REALLY matters in life. To help me to grow past getting bent out of shape during inconveniences big and small. Our power was out for 13 hours. A lot less than they thought. A couple amazing people came to our rescue. Made some phone calls and took us into their house for the night. I love to see the love of others surround us in time of need. I love how amazed people are by our boy. Last night around 11 we sat in the livingroom of our rescuer's ;). They couldn't get over how sweet Case is. They watched him play with his pump pack on and admired his ability and strength. I love this journey. The good, the uncomfortable and the frustrating. It hasn't been easy but it's our journey and it has made me stronger. Someday I will stop worrying about the things I can't control. Insurance crap, broken pumps and fallen trees. Day by day I free myself of fruitless worry and embrace (even more) the perfect gift Case is.

“How would your life be different if…You stopped worrying about things you can’t control and started focusing on the things you can? Let today be the day…You free yourself from fruitless worry, seize the day and take effective action on things you can change.”
— Steve Maraboli, Life

1 comment:

  1. Amazing! God always helps to put things into perspective, doesn't he. I'm so glad your family and your Jeep are OK :)