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, October 22, 2012

Dear Husband who Stuck Around.

Dear Husband who stuck around,

To you. The one I pledged my love to almost 9 years ago. You are pretty special. You're still here. After all we've been though. For better or worse and lately things have been worse more than better. Thanks for sticking around when most would have run away. Thanks for embracing the "special needs dad" role like it's what you were born to be. Thanks for defying the odds and preventing our marriage from becoming a "statistic". Thanks for watching all four kids (even the one with the beeping feed pump and leaky drain tube) so I can get out before I go nuts. Thanks for loving me even when I've already gone there (nuts). You're admirable. You're the hardest worker I know. Thanks for working SO hard that you've made it possible for me to be here, home (it's where my heart is). Thanks for wiping my tears, being my soft place to fall and showing me even the strongest of souls cry. Thanks for telling me I'm the best even when I feel like like worst. Thanks for listening to me complain over and over about the same thing. Thanks for forgiving me when I snap, yell and bitch. I know you don't feel like you do a lot when you work till 5 and fall asleep at 7 forgetting to take the trash out but you do. You stuck around and when the going got tough you got tougher. I'm proud to be you're wife and thrilled to be soon celebrating the better and the worse, the sickness and the health of another year.<3

Love,
You're ever grateful wife





2 comments:

  1. oh, liz. i just had a good cry. i'm so very happy that you and dan are such strong and loving parents...and strong and loving partners. that's such a blessing. <3 may god continue to bless you both.

    ReplyDelete
    Replies
    1. Thank you! But I can;t remember who you are... ha. Who are you?

      Delete