Friday, September 3, 2010

Looooonnnng Update

Hello friends! Lots has been going on lately. We bought our first house (yay!!), new van (yay yay!) and Adam is going to a small private school (thanks to special needs scholarship) and Harold and Emily are homeschooling (triple yay!!) Since the last blog Adams has been diagnosed with mild Cerebral Palsy. bleh. What is this 8? or 9 different "conditions"? We had another MRI due to back pain and it showed slight pinching, a mass in A's skull and more deformed vertebrae. Had to wait 3 months for a CT scan to check "progression". SO glad we have a good neuro-surgeon!! The CT scan was...well...revealing. I wish I could say he is healed. Life as we know it has changed for the better, and my child has become "whole". But. NO. God seems to tell me no....a lot. I'm not mad. I don't hate him. I just flat out do.not.understand. Adams' spinal cord isn't being pinched. The bottom part of his skull is slanted forward, towards his face. That's part of the mass in his skull, for some reason his body figured he needed more of 'something' back there. It also means that the hole that holds the "connections" between the brain and spinal cord is compromised. The cord is resting on his skull. Fun stuff. I'm no brain surgeon but that can't be good. What makes it even scarier is that the front of the vertebrae (i think it's C-1) is just a calcium depost. Not quite bone. and only one small spot. TRUST ME- it is NEVER good to see a SURGEON who you think has GOT to have seen it all...deflate. He let out the biggest sigh while he was on the phone with whoever was reading the CT scan. About the 3rd "this is a difficult case..and yes, i understand" coming from his mouth to whoever was on the other end, let me tell you .... I wanted to snatch my baby up and run....get in the van and leave....never ever go back. I don't know if it was strength or fear that made me sit in that chair. I had to sit through the decision making. No surgery, not because he doesn't need it. But because he's difficult. He's young. Hopefully the calcium will turn to bone, and fuse with the bone under it. Back in 6 months for X-rays. 50% chance of major, major, did he mention how major this surgery was enough? surgery....any time we go he may say its time. He won't do it until its absolutely necessary because he basically has 1 shot to get it right. Adam has 1 chance to heal right. Until then, no football (like my kid with autism, cp, xxy, and severe hearing loss is going to be playing football anyway!) , any contact (or potentially contact) sports and absolutely nothing that can put pressure on his spine....THAT is a tall order! SO SO SO SO SO glad we got enough donations to buy his car seat....We are ETERNALLY grateful to our friends and family for this. Now we get to be scared to death until Feb. Pray pray pray that this turns to bone and fuses naturally....Pray that we get enough donations to order his service dog....just pray. I need to find the joy that we had almost 8 years ago. I'm tired of the tears, I'm tired of the fear....I'm just tired tonight.... I'm going to add some poems and stuff that's getting me through this time.


One night a man had a dream. He dreamed He was walking along the beach with the LORD. Across the sky flashed scenes from His life. For each scene He noticed two sets of footprints in the sand. One belonging to Him and the other to the LORD.

When the last scene of His life flashed before Him, he looked back at the footprints in the sand. He noticed that many times along the path of His life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times of His life.

This really bothered Him and He questioned the LORD about it. LORD you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life there is only one set of footprints. I don't understand why when I needed you most you would leave me.

The LORD replied, my precious, precious child, I Love you and I would never leave you! During your times of trial and suffering when you see only one set of footprints, it was then that I carried you. ~unknown

The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.
Horace Bushnell