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.

Sunday, June 21, 2015

An Open Thank You Note to the Teachers of our Daughters.

Dear Teachers that have no idea what you are getting into when my daughters enter your class rooms in the fall,

Thank you. 
When you saw their names on your class list did you know you'd be wiping their tears, listening to their stories of their brothers countless hospital stays and comforting them while he's hours away with mommy having surgery number....I lost count?
You didn't judge me when their hair was un-brushed and they forgot their lunch. You just smiled and got them fed. 
Thank you for being patient with me and sending extra field trip slips and bus tags home. You knew how often I couldn't be home because I was at Children's holding their brothers hand while he fought yeast in his blood, had blood transfusions, tests, tests and tests.....
You wore his t-shirts on the days my girls needed it most and made us a part of your classroom by hanging his pictures on the wall, reading my emails of comfort to my daughter telling her everything is going to be okay. You even let us come in to do a presentation on "Feeding Tube Awareness Day". 
You helped them, you love them, you never stopped rooting for them and their brother. When school ends for the year, you are still praying, still loving and still rooting.
You, teachers have no idea how much you mean to me. To my children. to my husband. 
I'm sorry I wasn't homeroom mom and that I forgot to send snack more times than I remembered...I was busy fighting insurance companies, sitting in ERs and laying on a hospital beds beside a very sick little boy.
You didn't give them special treatment because their bother is sick and they don't always have their momma home. No, you treated them the same as the others and for that I am thankful.
You, sweet teachers have hearts bigger than your paycheck and I see it in your eyes. Thank you for hugging me when I'm in the hall and not judging me when my eyes fill up with tears. It's people like you that keep people like me going. Thank you.
What a crazy journey you got thrown into! Not by chance but because God knew my daughter need you.
When she couldn't have me. When mommy and brother didn't come home from his appointments for days, weeks because he was too sick to leave, you were there to reassure them and listen with your whole heart.
While I sat in those hospital rooms, sometimes in isolation because my little one had some contagious infection, I was praying. Praying that my little girls would weather these storms and come out stronger than when they went in. I was praying for you. Praying that God would give you the grace to keep being patient and loving with us. 
You, sweet teachers are gifts from God and I can only hope that He continues to bless my sweet girls with such amazing teachers as we continue to fight this war of chronic illness. 
Thank you. I will never forget you.

Love,

Tired, thankful me.