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, June 11, 2013

It's just, well...what I do.

It's just..well..what I do. 

When I go to the dentist or to my Dr. I naturally get asked what I do. I tell them I stay home with four kids, one has special needs. The next question is, "What all is wrong with him?" I don't usually have all day so I give them he short list...the really short list. I usually get blank stares and "I'm sorrys". It's those moments that reality slaps me in the face. That I remember that 2 1/2 year olds are usually starting to get independent. It's about this time that they sleep through the night and you can just put a diaper in your purse and leave the big, bulky bag at home. I remember that beach trips and outings were less trouble when the girls were 2 1/2. Less preparation...less work. I watch as my Dr looks concerned at me and says, "How do you do it?". I never know how to answer that. I don't have super powers. I've never been very patient and I'm grumpy on too little sleep. I just do it...really. I find inner strength that I didn't know I had. I trust. With all of my heart, I trust that Case is Case and God made him special for a very special reason. I take what was handed to me and decide to let it make me better not bitter. I succeed and I fail. I laugh and I cry. I take the blessings as they come, whether it be a meal from a friend or and presents from a stranger. I'm humble and forgive myself when pride takes over...I just go and hope that at the end I will make my children proud. I don't know if things will ever get easier. I don't know if Case will ever stop needing his tube or surgeries or if Pittsburgh trips will slow down but I hope, like the 2 1/2 years previous I will always find strength on this journey....As for my new Dr. that listened so intently to Case's ailments and the story of how we thought we'd lose him...He looked at me at the end of my visit and said, "I'm not a pastor and I'm not a priest but I believe with my whole heart that children like yours are given to mothers like you for a very special reason. At the end of the day you wouldn't change him because he is a blessing." He's right and it doesn't take a pastor or a priest to figure out that different isn't defective, different is beautiful...

1 comment:

  1. What a wonderful truth filled post! May God continue to bless Case & your family <3

    ReplyDelete