Seeing those two words, we still can't believe it ourselves. We feel like we are in a bad dream that we are about to wake up from. We keep asking God, is this for real??? Do we really have to do this??? Is this all a figment of our imagination??? Can this be????
This will be Kaleb's 6th surgery!!!! He just turned two in August, and he has already been through so much... All these thoughts and questions circle in our head, some more scarier than others. Bottom line, Kaleb needs the surgery. We were told by his neurosurgeon that Kaleb's chiari malfromation will never get better and it will only contiune to get worse. Kaleb's brain will never raise up out of his spinal column and it has attached itself there. Kaleb's brain is now resting on top of his brain stem and what will happen is not pretty. The bottom part of his brain (cerebellar tonsils) will start to slowly deteriorate his brain stem, which will result in brain stem damage.
Since Kaleb is still missing CSF fluid around his brain stem, it remains fragile and exposed. CSF fluid is fluid that ciruclates in our spine and brain and acts as a cushion or buffer for the brain, providing protection inside the skull. It also serves as a vital function in blood flow. So as our heart beats, our brain pulsates and the CSF fluid flows consistently without any blockages. Since Kaleb is missing fluid that is supposed to protect his brain stem from any fall or any wrong twisting of his neck, his CSF fluid will start to get blocked up in different areas of his body. When this happens it is called a syrinx, a fluid filled cavity within Kaleb's spinal cord (syringomyelia). It can even happen in the brain stem (syringobulbia).
When Kaleb builds these cavity pockets, it will eat away at his spinal cord, causing all kinds of damage. Last but not least, since the bottom of Kaleb's brain is herniated and not getting the proper flow and blood supplies it needs, the brain tissue will begin to die... When this happens, it can start damaging other parts of his brain. When all this damage starts to happen to our son, it will be irreversible... We won't know when it's happeining, until one day it affects him and we see the results of the damage. He can go to bed fine one day and wake up not fine the next. So, we had two choices... to do the brain surgery or to come back to Texas in about 6mths to get Kaleb's spine, brain stem, and brain scanned, so they can start looking for damage.
As hard as it is, we feel there is no choice for Brian and I... We can go through with the brain surgery and try to give him a shot at LIVING and living a normal life with no restrictions. Our other option is don't go through with the surgery and watch our son deteriorate right in front of our eyes.
As a parent who would go to the ends of the earth for her child, a parent who would even trade places or die for her child, if thats what it takes...... I ask you, what would you do????
Proud Mommy of a Cranio, Chiari and VSD Baby!!!
"God only gave you this life because he knew you were strong enough to live it"
"People are like stained glass windows. They all sparkle and shine when the sun is out. It is when the darkness sets in that HEROES are revealed, as their mesmerizing courage shines through from the light within" - Elizabeth Kubler-Ross
LOVE for Dallas!!!!
Our niece Haley next to Kaleb's heart on the wall at school