It's not fair.....

I've been saying this lot since last Tuesday and processing information but wasn't ready to post until I spoke to our physicians to make sure I understood where we are at in this process and what is the plan. I also have to deal with all of this before I can communicate it.

Jeremy underwent a 3 hour extensive MRI last Tuesday but I know why our physician wanted that, he had areas he needed to see. My prayer has been, for GOD to heal the spine without surgery, not have to deal with surgery for several more years to never and believe me never was my favorite word. The scoliosis is progressing and starting to rotate inward so we can no longer take the wait and see approach, this much is agreed upon between Cyrus, Anagnost and me. We are heading toward getting it fixed and he suggested within 6 months.

I spoke with Dr. Cyrus who told me that me that Jeremy has a ligament around his vertebrae that is loose, we do nothing about it, it's what it is he said we just wouldn't want him to ride a horse that is jogging or do a high jump at special Olympics, not a problem. Nothing Jeremy does at home or PE at school is going to do any damage, we are aware it is there. Jeremy also has fluid around his spine but again it is what it is, not uncommon with hydrocephalus. We will be seeing Dr. Marouk our NSG at some point.

Dr. Anagnost doesn't feel Oklahoma would be the best place for the surgery, he said we need to be somewhere that this is done frequently since Jeremy's complex, the spine is the spine and once you fix it you fix it. He needs to be where they can handle the worse case in case it happens, not wait until it happens and then realize we weren't prepared. He also admitted he's not familiar with what all they have done over at St. Francis Children's since the new facility. I did ask what he would do, he said he would do a 2 part, deal with the rotated spine first which would be enter from the front of his chest to fix it, put him in recovery, stabilize him and several days later go back for surgery to fix the spine from the back. It could be possibly 5 hour surgery both ways, verses doing it all at one time. He said they could use a growing rod or choose to fuse the spine, that is really a decision once you get in there. If we fuse the spine Jeremy's spine will not grow anymore, his torso will be what length they get after surgery is that a bad thing, not really.

The plan is to go to Shriner's Oct 5 & 6 for our appointment to get their opinion. I have an appointment with Dr. Preston Phillips in Tulsa on October 30 to get his opinion. He suggest we make an appointment with an Orthopedic surgeon in OKC to get his opinion as to what he thinks. I guess at that point we take what Anagnost, Shriner's, & Phillips says and make a decision.

Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge him, and he will make your paths straight. Proverbs 3: 5-6

My prayer request is specific, GOD send me the surgeon, facility you would have us to go. If that means Shrine's in Shreveport, St. Louis Children's, Tulsa or Louisville, KY.