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.

Thursday, May 23, 2013

Until death do us part.

I've read over and over again about the high divorce rate in parents of special needs/medically fragile children. 75% or 3 out of 4 married couples with medically compromised/special needs, etc. children get divorced. Yes, 3 out of four meaning there is only a 25% chance Dan and I will stay married through the storms of this life we've been chosen for. Being married is hard. Being married in stressful circumstances is harder...When we said our vows, we said we'd love and cherish each other "until death do us part". We didn't know the storms that would be ahead but we committed to each other for better or worse, for richer or for poorer.... We decided we'd always be together and together we are. I'm not saying it's easy raising kids together. It's not, it's hard. Add medical bills, surgeries, long hospital stays, negative bank account balances and all the other "goodies" a miracle like Case brings and some days you wonder how you're doing it... You don't always see eye to eye and sometimes (most of the time) you have to swallow you're pride and decide love is better than hate. Humility beats pride and joy is better than justice. I'm not saying we are better than the divorced couples because "we stayed together and you didn't". I'm saying we're lucky and blessed to have found each other because our weaknesses balance out our strengths. We're fighters and we're stubborn. We each try to give 100% because usually the other can't. We know if we only give 50% to our marriage one of us will fall short...We're in this together and we make mistakes everyday but we're together for a reason and by God's grace our 9 1/2 years of marriage will someday be 60 and we'll know that no matter how hard it's been or how many times we almost gave up, God was still be behind us holding us up and whispering, "Forgive for I have forgiven you..." Thank God for forgiveness and for helping us prove statistics wrong...


1 comment:

  1. we have a medically fragile very brain damaged child who is now almost 5 years old. (we also have 5 other children, 3 older and 2 younger)
    during the worst of our son's medical issues we drew closer to Jesus and to eachother clinging to eachother with all we had in us. we made it thru that tough time and our marriage grew stronger every step of the way.

    i think that in many marriages the husband and wife tend to blame eachother for the added stress of a disabled child, and that rips family apart.

    thank you for your post. i will keep you in our prayers as you struggle thru the hard times.