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.


  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!

  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!

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