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, January 2, 2013

Half-Brained Thoughts from a Special Needs Momma.



Top ten thing's I've seriously considered doing when I'm low on sleep and patience.

10. Throwing Case's feeding pump out the window. Really. Some days that thing must beep hundreds of
times. He's carrying it around constantly. It beeps when it's empty. It beeps when the tubes twist, kink or clog. It's an annoying, beautiful, life giving machine that I have a love-hate relationship with.

9.  Just driving. And driving. And driving. Alone. With the music blasting. I'd come back eventually but only once I'm well rested with a manicure.

8. Taking the 10+ (front and back) partially filled out papers asking me if my son is "still medically complex and if so to prove it", crumpling them up and leaving them on the doorstep of the office with his bottles of meds, tubes, pump, syringes, all his medical records and maybe some vomit with a note that reads, "Yes, he is still very much the same as he was the last time I did paper work to prove it".

7. Drinking a whole bottle of NyQuil and sleeping for a week.

6. Eating chocolate. All day long. Lots of it. Nothing else except maybe coffee. Make that a week. I'd like to eat pounds and pounds and pounds of chocolate while sitting in a hot bubble bath. No phone calls, no paper work, beeping pumps or vomiting 2 year olds just Mark Hoppus and Jason Mraz playing on repeat....

5. Going to the mall and cutting holes in half the zipper sleepers and leaving a note, "I made your sleepers feeding tube friendly. You're welcome."

4. Kissing all the tubed, trached and wheelchair bound babies/kids I see and telling them they are beautiful, important a blessing and I love them.

3. Putting a sign on my door that reads, "If you're selling me something, handing me a tract or asking for donations, don't knock. Just go away. I don't have money. I have Jesus and I only donate to sick children related charities".

2. Every time "Sally" from my son's health insurance's "Special Needs Department" calls to tell me she "Knows how I feel and is there to help but can't help get any benefits back for him that have been taken away." I seriously consider saying, "Yeah, 'Sally'? I don't believe you. Really, stop calling me."

1. Kidnapping a nurse who has OCD, a cleaning addiction and a love for paperwork and making her my personal assistant, forever and for free.

"Let's just go back to sleep and start this day over."

5 comments:

  1. Love this! I think I will do number 4...even if their Mama's hit me over the head with an umbrella!!

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  2. I am ready to do #1!! (Starting with nursing agency number 3)

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  3. I'm right there with ya on numbers 9, 6, 4, and 1!!!

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  4. That was really beautiful..You and your Family are on my heart and in my prayers..I just love Case he makes my heart smile..

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  5. You are awesome. I love your honesty and your witt in this list. I wish we lived closer I would dedicate as much time as I could, per week to helping you with your mundane duties that you just do not have time for, like filling out papers, cleaning up, and anything else you needed. God Bless. Case is so lucky to have been given YOU as his Mommy!

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