Friday, September 25, 2009

Wonderful, Awesome Morning....

Today Jeremy started morning latch-key which is an adjustment for us, I had to get up early be ready, he had to get up get ready and be out the door by 7am, so I can drop him off and make it to work by 7:30am…. WHEW. It was an awesome, cool, morning, great weather and I love it. Jeremy was in an awesome, awesome mood, laughing, really chatting up a storm this morning. I asked Jeremy this morning, do you remember when mommy had a different car, how much bigger it was, you were a bazillion miles away, I couldn’t touch you, he was laughing, do you think I should get a new car like that? and with excitement he screams, YEA. I’m sure it was the excitement in my voice but we were having fun. A month ago, this guy backed into my parked Kia and smashed the driver side door in, my insurance rented me a Kia Rondo. A Kia Rondo is their version of a new station wagon, it’s bigger than my little spectra, gets about the same gas mileage. The first day I let Jeremy get in the car and sit his eyes got big and he looked like this is different and I was playing with him, “where is Jeremy at, I can’t reach you” so it was a big game. I really liked the vehicle. My car has been paid for almost a year, but it’s getting older, higher in mileage, but it runs great. I started the research of getting a Rondo, checked out insurance rates, approved through my credit union, have a price in mind when I go to the dealer and have an estimate of what I can get it for.
Today is Career day at school so I always dress Jeremy in his current OG&E lineman’s expo T-shirt from Sapulpa District……GO OGE ORANGE. I coordinate getting our OG&E serviceman there with our big orange truck, the school & children love OG&E, Greg is so fun, interactive with the children and they get to come up and see the truck, the tools. The school promised to get me some pictures of him by the truck so I’ll post what I get later today. I’ll be going up there later to see how it’s going but I don’t know what time Jeremy’s class goes around.

Saturday, September 19, 2009

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.

Wednesday, September 9, 2009

Family Reunion...

For the past 20 years plus Labor Day is the weekend for the Smother's Reunion, that is my mom's family. Last year I was going to let Jeremy experience camping but he broke his leg at my OG&E lineman's expo so we went for the day. This year I was geared up and ready, borrowed a tent from my sister and camped next to her RV and a tent w/ her 3 boys next to us. My brother in law cooked us breakfast each morning which was awesome, something about camping out and eating breakfast. Saturday night we had a campfire and roasted marshmellows and had smores, oh they were good. I limited myself to 2 small ones...It was wonderful time away, the weather was awesome. It did get hot a few times but not like it could be for the 1st of September in the Great state of Oklahoma. We came home Sunday evening to recover, I need the day to get back to life.

Jeremy has his brain/spine MRI scheduled for September 15, we check in at 6am and his test is at 8am should last about an hour or so, I'm estimating we should be home around noon if not before. I have to take the films and report to Dr. Anagnost, once we get our new brace we go back to Dr. Anagnost for results and X-ray in brace. We have an appointment with Dr. McCall at Shriner's in Shreveport on Oct 6. I want to see Dr. Anagnost before our visit to Shriner's to get his opinion of the MRI before going to Shriner's.