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, May 22, 2012

"You are stronger Than any terrible possible scenario today"


Yesterday was Case's Nephrology appointment in the Children's Care Clinic. We met a new Dr. He was great, thorough and gentle. He had a genuine concern for Case and took lots of time talking with us. Case's good kidney looks good (there are small pockets of fluid but this is fine for now). His bad kidney is very clearly not functioning and very slowly shrinking. The Dr. asked if he has dwarfism. If I had a dollar for every time I got asked that question, I'd be going to Disney Wold. Case does not have dwarfism. He had a skeletal ex-ray while in the NICU. It came back normal. The dr. was concerned with his Sacral Dimple. He thinks he has a tethered cord and Spina Bifida Occulta. This is not the first time these conditions have been mentioned. He wants an MRI in the future. Because Case is so young, he will have to be knocked out for the MRI. I will update you all when a date is made. The doctor was concerned with his size and feeding struggles (as all his doctors are). He would like another Upper GI. This time he wants it followed into his bowel. He thinks there may be a malrotation. A Malrotation is "twisting of the intestines (or bowel) caused by abnormal development while a fetus is in utero, and can cause obstruction. Malrotation occurs in 1 out of every 500 births in the United States". I will be speaking with his GI doctor in June about this. He also ordered blood work and a renal sonogram in the near future. 

Whew, That was a busy appointment! Sometimes when Dan and I leave appointments like this we feel a little overwhelmed. Since before Case's birth we've spent appointment after appointment being bogged down with all the "worst possible scenarios" that there could be. Sometimes it feels like a lot. It is then that I look to God and tell Him I trust Him. I trust Him with Case's sweet life. We've been through hell and back with scenarios and I am done letting them get the best of me. 

"Remember that I am sovereign over your circumstances, and humble yourself under My mighty hand. Rejoice in what I am doing in your life, even though it is beyond your understanding."

"You are stronger
Than any terrible possible scenario today
Come and save me
You're the only source of all the peace I need"

Thank you God for being stronger. You are all the strength I need.


2 comments:

  1. As always, Liz, I admire the strength that God has provided you. Case is always in our prayers. I look forward to seeing you in one month :)

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  2. Thanks! I look forward to seeing you too! I'm not sure if we can spend the night at RMH but either way, we'll visit.:)

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