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.

Wednesday, March 28, 2012

A very special Meredith.

As you read in yesterday's blog post I am contributing a few blog posts to the other members of this family. Today is dedicated to our first child, Meredith Rae McNulty.
Meredith was born on June 4th, 2004. Words can not express the joy and love you feel when you meet your first child. From the very beginning of Meredith's life it was apparent this girl would do great things. Her name means protector and a protector she is. She has been nick named Momma Mere-Mere by here sister's and some of her  younger cousins because of her protecting nature and motherly instincts. Meredith also has a commendable work ethic and the desire to love and help making her a huge asset to this very special family. When Meredith does something she alway wants to do her very best. She was home schooled up till this school year. When she started second grade this past September her biggest struggle was reading. She hated that it wasn't easy and I lacked patience. At the beginning of this school year she was reading at a kindergarten reading level. With countless hours of practice and unmeasurable amounts of hard work Meredith brought her reading score from 5 words per minute and 5% accuracy to 81 words per minutes and %99 accuracy (taking her from the bottom of her class in reading to the 12th best reader in a class of 28). Her teacher just told me today she uses her as an icon when she talks to the other students about reading progress. We are so proud of this little lady and admire her strong work ethic, servants heart, and sincere love for others. 




Meredith is playing basketball this year for the first time. She may not always know what is going on but she is always smiling.:)

2 comments:

  1. She's so sweet! I bet you are so proud of how much she accomplished this year in school.

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  2. Mere Mere! We love you so much!

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