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, December 2, 2012

These are a few of my least favorite things...

Being a mom of a "less than typical" child in the eyes of the world changes how you look at, well lots of things. For instance, the common fever for Case could and has sent us to the hospital. So, I decided to compose a list of a a few of a special needs mom's least favorite things (from my perspective;)

*Fevers. No, nobody LIKES fevers but for a child with special needs there's so much going on on the inside that a fever could mean a very, serious infection and lots of hospital time.
* The show, "The Baby Story". I used to love that show. Now, it really yanks a nerve. Maybe I'm a little jealous that my birth of my special child was less than typical or I'm annoyed that the stupidest, little complication will send everyone into a frenzy. Either way, it annoys me.
* Watching other children eat at a restaurant. It just hurts my heart a little for my son not to be able to do what most moms (including me with my other children) take for granted. Eating. With out pain or trouble.
* What to expect when you're expecting emails...Gah! I signed up for these before I knew my pregnancy was complicated and for what ever reason (over 2 years later) I'm still getting them. FYI, my toddler should be eating ants on a log, learning to potty train and blow his nose.
* Zipper sleepers. They are so cute and easy to find but allow no room for medical tubes.
* When the doctors office or special clinic mixes things up and the person I normally talk to is "out" so I need to explain EVERYTHING (which takes like 4 days;) about my special boy to a complete stranger.

* Joint hospital rooms (that one is self explanatory)
* My local ER. Yes, I appreciate it but its not my Children's and its less than prepared for my "less than typical" toddler.;)
* My local pharmacy. They annoy me greatly....

Okay, okay. That's more than a few and I'm sure there are a "few" more;) but I thought I'd enlighten you on the things that I think differently about now that I'm a different kind of momma.;)

*Disclaimer: This is just my little rant. I do love being a special momma and wouldn't change my "less than typical" toddler for the WORLD!

So, I've been told.;)

1 comment:

  1. You are not the only one...I especially love your (mini-rant) about "A baby Story." I used to watch this show before & after my daughter's birth. However, after my son's birth & subsequent diagnosis...I couldn't even stand the episode previews! I also share a dislike for the local E.R. & local pharmacy! In fact, I'm with you on every topic!