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, October 14, 2012

Number 14.



14. That's how many specialists the boy has now and that's with counting the "feeding team" as one specialist. If you add his pediatrician and therapists it would be 18. Case's GI doctor called Friday with his MRI results. Case has a Tethered Spinal Cord, a small Foramen Magnum Stenosis and some abnormalities of the brain stem. The GI thinks the brain problems are possibly being caused by the pressure of the cord pulling down on the brain. As Case grows his spinal cord is staying put (because it is connected to vertebrae) and pulling down on his brain. I will learn more when I meet with his new specialist, Neuosurgery. I'll make his appointment tomorrow. It sounds like he'll need to have Neurosurgery to "release" the cord. This pressure is most likely what's causing his night time-early morning vomiting (from the GI's perspective). When he lays down at night he is putting pressure on his brain and in turn he is vomiting. Constipation, slow motility and vomiting are all problems that can be associated with a tethered cod. Releasing the cord doesn't mean all of that (which Case continuously struggles with) will go away but it will probably help.
As I listened to the kind, gentle voice of Dr. Ruldolf (a man I've grown to love and respect) I felt my mind start to spin a bit. "This is a lot for a little boy. Things aren't slowing down. NEUORSURGERY?! That sounds scary Ect." Those thoughts were quickly interrupted by images of children who are fighting for or who have lost their lives (on my Facebook wall, of corse) and I remembered "it could be much worse." This is a very special journey where we are being bent but we will not break. Case is very alive. His struggles are minor compared to some. I quickly caught my mind and didn't allow it to go into self pity. Now, I will tell you I had a comforting and blessed day yesterday. Three different friends dropped by with three different blessings (not to mention a few blessed phone conversations). You see, I have these people in my life that fill me up with coffee, food and love when I'm going on empty. These are my go-to-girls and they are very special!!

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish it's work so that you may be mature and complete, not lacking anything.
—James 1:2–4
Case had two IVs during his MRI.
One of which he quickly pulled out.



Ready to go home.

3 comments:

  1. I love your heart and your ability to keep your perspective in check while under immense amount of pressure...kinda like Case's brain :) You both are miracles and I love seeing what God can do through you all!

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  2. Case is a beautiful child, I just want to scoop him up and hug him. I hope the Neurosurgery goes as planned. Big hugs to you mom, love your spirit!

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    1. Thank you! I'm glad you are enjoying his story. He's quite the fella.;)

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