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, July 15, 2012

Not for the Weak.

This week was exhausting. It started out with Case's fourth surgery and ended with his doctor adding two more specialists to his already long list. Surgery went pretty well and recovery was not too bad. He had a good bit of pain and discomfort (for that I gave him Tylenol with Codeine most of the week), fevers,  some vomiting, constipation and is getting 4 teeth now. He was able to get a stitch and weight (to keep the left testicle from floating back up to his abdomen) removed at his local Pediatrician's instead of going to Pittsburgh. I asked if that was okay and the urologist okayed it (it saved us a long trip and a bit of money:). Friday, while at his Pediatrician's, I asked again about the rash that he had since April or May and he said he thinks it's chronic and set him up with the Children's Hospital dermatologist. He also set him up with the dental clinic out there. It seems Case's tiny mouth doesn't have enough room for all his teeth… Case was switched to Nutren JR. formula in hopes to gain more weight. It has almost double the daily calories as the Enfamil Enfacare and since he has been tolerating the J feeds so well, the Dr. wants to pump (literally) more calories into him. 

 I took Case to an amusement park this week and the ride operator made him get off of one of the kiddie rides because "he didn't have shoes on." This irritated me. I tried to explain to her that he is 18 moths old and shoes don't fit but she walked away. I wanted to know why my boy, the boy who goes through so much couldn't have fun on the ride like all the other toddlers. It gave me a glimpse into the not-so-wonderful world of discrimination. I've taken Case to that park a few times now and he rode most of the kiddie rides all the while being shoeless. I don't know what her deal was or if she really was "following regulations" that nobody else follows but it broke my heart and it was like reality smacked me over the head. Case is different and sad but true, chances are he will sometimes be treated unfairly, stared at and made fun of. I know that Case is strong and getting stronger every day. He is a beautiful soul that loves beyond the flesh and will more than not be loved the same; but for the times that he is judged and treated unfairly, I hope that he forgives and that forgiveness makes him better not bitter. A life of special needs is not for the weak. Case is not weak, he was made perfect and STRONG. Forgiveness is freedom. Though this journey there are going to be a lot of "ride operators" that don't appreciate Case and his awesomeness but that's where they are and if I hate a little every time it happens I will grow old and angry. I ask for the grace to forgive because forgiveness brings freedom to the soul.

“To forgive is the highest, most beautiful form of love. In return, you will receive untold peace and happiness.” - Robert Muller

I can't believe what she said
I can't believe what he did
Oh, don't they know it's wrong?
Don't they know it's wrong?

Well maybe there's something I missed
But how could they treat me like this?
It's wearing out my heart
The way they disregard

This is love. This is hate.
We all have a choice to make

Oh, Father won't You forgive them?
They don't know what they've been doin' (oh no)
Oh, Father, give me grace to forgive them
Cause I feel like the one losin'

It's only the dead that can live
But still I wrestle with this
To lose the pain that's mine
Seventy times seven times

Lord it doesn't feel right
For me to turn a blind eye
But I guess it's not that much
When I think of what You've done.
[ Lyrics from: ]
This is love. This is hate.
We've got a choice to make

Oh, Father, won't You forgive them?
They don't know what they've been doin'
Oh, Father, give me grace to forgive them
Cause I feel like the one losin' (oh no)

Why do we think that hate's gonna change their heart?
We're up in arms over wars that don't need to be fought
But pride won't let us lay our weapons on the ground
We build our bridges up, but just to burn them down
We think pain is owed apologies and them it'll stop
But truth be told it doesn't matter if they're sorry or not
Freedom comes when we surrender to the sound
Of Mercy and Your Grace, Father, send Your angels down (singin')

Oh, Father, won't you forgive them?
They don't know what they've been doing (oh, no)
Oh, Father, give me grace to forgive them
Cause I feel like the one losing
I feel like I've been losing

Oh Father won't you forgive them
They don't know what they've been doin'
Oh Father, give me grace to forgive them
Cause I feel like the one losin'
I feel like I've been losing

Oh, Father, give me grace to forgive them
Cause I feel like the one losin'

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