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, April 3, 2012

A very special marriage.

Dan is very special. Our marriage is also very special. Dan was 20 and I was 19 (I was not  6 months out of high school) when we married. I'm not going to lie. Marriage wasn't always easy. Anyone who says marriage is easy is either a saint or a liar. It's hard. It requires work, dedication, commitment and most of all selflessness. I once heard an interview of a hundred year old woman who was celebrating her 80th wedding anniversary. The interviewer asked her how they stayed married for so long and she responded, "We never fell out of love at the same time.". I really liked that. In my marriage there were times when Dan or I weren't giving 100% to the marriage but the other (usually) did.I found that as a wife I can't make Dan the best husband. I can't make him be what I thought "a perfect" husband was but if I love him at his lowest moments and try to give 100% all the time I've found that he loves me back even more. He becomes exactly who he needs to be for me. Our marriage has never been perfect but it's ours and it's blessed me more then I would have fathomed 8 and 1/2 years ago. Dan really is perfect for me. He is strong and dedicated. One of the hardest working men I know. If you've ever met his dad and grandfather you'll know why. He comes from a long line of hard working, dedicated, caring men. He loves. Together we have created a Very special family and I couldn't have picked a better man to do it with. Dan is not perfect but he is perfect for me.;)

November, 25th 2003

1 comment:

  1. I love all the photos! What a cute couple you are!