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, May 7, 2012

A very special Momma!

With mother's day soon approaching I thought I'd blog about all you special mommies!
Definition of MOTHER
a : a female parent

b (1) : a woman in authority; specifically : the superior of a religious community of women (2) : an old or elderly woman
: source, origin <necessity is the mother of invention>
: maternal tenderness or affection
: something that is an extreme or ultimate example of its kind especially in terms of scale <the mother of all construction projects>

but a mother is so much more. If I were Webster this would be my definition: 
1. A women who holds her pee, ignores her hunger and rarely brushes her hair in order to meet all of her children's needs twice over before her own. 
2. A women who has felt a love in a very deep and different way then ever before. 
3. A woman who would indeed die for her children but instead lives in a way she hopes will inspire them. 
4. A women who makes mistakes yells sometimes and has been more frustrated then she would like to admit but at the end of the day knows that she is the best mother she can be and for that she should take a deep breath, wipe the vomit off of her shirt and sweat off of her face and treat herself to a bottle (er, uh glass) of wine! 

No, really being a mother is hard work. It requires a strength you never knew you had, a love you didn't know existed and a selflessness that can only come when you hold your child(en) for the first time. Whether you are the mother of one or 6 children you deserve a pat on the back and a big "At a girl!" because you work hard. You are a blessing and you are richly blessed. 

While I was reading one of my favorite blog's "Samuel's Light" I came across this equally awesome blog:Rants from Mommyland. I really loved this particular post and have decided to to participate in their "Mother Pucker Project". This is what the Mother Pucker project is: "The point of the MotherPucker Project is, we want to reach out to moms in need and give them a little encouragement, help and love. It's about letting a mom who really needs it know that someone, somewhere GETS IT. That we see her for who she is and we want to thank her for what she's doing for her kids."

Simple and sweet. I encourage you (if feel like it, of corse:) to venture over to their pretty awesome blog and see the steps on how to make a momma feel special on her day. 

1 comment:

  1. If I were Webster, and you looked up MOM, YOUR name would be in a list of a very special few!
    You`re a great Mom....Luv ya! <3