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.

Thursday, November 8, 2012

Stress is served best with a side (or six) of coffee.

In the past 9 days, Case has had surgery, fevers, countless vomits, a short hospital stay, an appointment with the Ortopedic surgeon, an x-ray on his legs, hips and feet, a hearing test (that revealed some issues and led to a new specialist, ENT), a crainiofacial appointment, trips to and from Pittsburgh, a sore, healing back, extra meds, and countless beeping from his pump....on top of the Case issues, we had a showing for our house. It took all day and help from a friend to get ready for...but I'm SO ready to get this moving party started! If Dan's not working or driving he's often sleeping (due to the fact that he's working his ass off) and our three girls are extra whiney, fighty and cranky. Then of corse there's the usual phone calls, insurance issues etc., etc. Let's just say, this momma is worn out! So, then come the stress headaches. Ever so slightly they begin but with each passing hour they get more and more intense. They steal my day, my moments, my thoughts and my cuddles. When one gets so bad that I'm sick to my stomach and my very nerve endings hurt that's how I know. I know that stress has taken over and no amount of coffee or Excedrine for mirgrane is going to help. I feel like I'm drowning in my own pain and when you're stuck in an intense mirgrane, you feel like it will NEVER end. Like you'll be sitting at your child's wedding imagining putting you head in a blender just to stop the demon that is a stress mirgrane. Eventually they lift and you become normal again but this normal is still new. It's been almost two years since our normal readjusted and some days I feel like I still haven't gotten the hang of it. Like, I'm ready to "clock out" and take a vacation from my life. Some of this stress is "only for a season" and some will last a long time but either way if I keep my head in the game and my coffe cup full. I know I've got this. And on the days that I want to find a hole to crawl in I know that He's got me and that I will find strength in the journey.

Waiting for mommy to get done with her chiropractor appointment.:) 

No comments:

Post a Comment