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.

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.

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.

Jeremy's 2nd day of 4th grade

Jeremy is officially in the 4th grade, he's adjusting quite well. He's been tired, but that is typical for him.

Here our a few pic that was taken today, him getting off the bus and then walking to the house. I was looking at the pic of him getting off the bus last year and he has really grown over the summer.

Not so great news...

The X-ray we took at Dr. Anagnost office on Tuesday showed that it looks as though the scoliosis has progressed a little more, but that wasn't the worst news it has also started to rotate in which it hadn't done that. That is the reason he is started to get a hump even more prominent on his back. Needless to say he wasn't pleased, said he was hoping we wouldn't see that until Jeremy was 12 to 13 years old to never. He said the increase could be the difference between the old facility X-ray and the new so that didn't concern him. He agreed that a Spine MRI would be in our best interest, since Jeremy would be out and we wouldn't have to rely on him standing still and getting the shot at just the right time, it could be compared to the one we did 5-6 years ago. He will order a brain MRI at the same time, since we will be scheduled to see Dr. Marouk forthcoming this will save a CT scan later on, plus Dr. Marouk suggested we do periodic MRI. I'm going to coordinate with our orthodist to get him to brace Jeremy while he is out and sedated so we get a good cast. I love Dr. Anagnost because can sit and talk to him and he answers my questions honestly. I asked him would he get a growing rod if he has to have surgery and he said yes, and I asked how long and it depends on the MRI, how well the brace is holding him in. He said it is great that it has not slowed down his mobility or he isn't having any breathing problems or organ issues. Praise GOD for that.

I'm starting research into facilities, he mentioned Shriner's which is an option but he suggested the one in PA since he did his residency there and they did spinal surgeries on kids from the Shriner's but I don't know if I would get that option to go where I wanted. I'm checking into St. Lois Children's, Dallas Children's, I've heard both places do a great deal of spinal surgeries.

Please pray for Jeremy, my first prayer is that he doesn't have to have the surgery that GOD starts healing that spine, but pray for him as he has the MRI, which will have to be under general. Pray for Jeremy's medical team as they start running these test and start consulting each other. Pray for me as I start to make some of the decisions. Pray that if Jeremy needs this surgery that GOD sends us to the physician, facility that he has prepared for Jeremy to have this surgery at.

Jeremy's 10th Birthday

Today, Jeremy turns 10 years old. It's hard to believe that 10 years ago we entered St. Francis Hospital at 6am, after carefully looking around the nursery one last time and telling the baby, "this is it, this is the day that I finally get to meet you and you get to meet mommy". I was so excited not knowing if we were going to have a Kayla Dawn or a Jeremy Ray.

Jeremy Ray entered the world at exactly 9am by an emergency C-section, shortly after Dr. Lunn (My awesome OB/GYN) broke my water the baby's heart rate started dropping dangerously low, it was determine the baby was in fetal distress and off we went. I was so scared and prayed to GOD, once they told me the baby's heart rate was so much better I felt better. It was the most awesome experience I've ever had was to be shown my baby boy for the first time and look into them precious eyes, knowing this is what I've been doing for the past 9 months. Jeremy did overall fairly well that day, had apgar scores of 9 and 9. It was 12:30pm when our Pediatrician, Dr. Scott Cyrus came in and told us that he suspected Jeremy had hydrocephalus. I've said it before it didn't matter what Dr. C said to us all I heard is there is something wrong with my baby. Jeremy had to go into EOPC that night, and the ride down there was so lonely, scary, you just know if your baby is there they are sick, there is some reason they need to be there. Jeremy was going to have surgery the next morning to place his first shunt to help drain the CSF from his brain into his tummy, since he couldn't get rid of the fluid on his own.

Here are some pictures of his birthday weekend, we had his birthday party Friday evening at the Liberty Splash pad, then Saturday we took a trip to the Oklahoma Aquarium. We went to church, stayed for dinner and then evening service.

Happy Birthday to my Miracle Jeremy Ray, whose had endured more the past 10 years then most people do all their life, and has taught his mom more than I ever imagined. I love you and couldn't imagine my life any different than what the past 10 years have been.

Camp Ali

This is an article that ran in our local paper on the Autism camp that Sapulpa schools does. Jeremy is in the 2nd picture he is the very blonde headed boy in the front that has his head turned so you can see his gorgeous face. He really enjoyed it and ended up having a great time. They told me one day he was the only child who would go through the obstacle course that they built...


http://www.sapulpaheraldonline.com/articles/2009/08/06/community/doc4a7b0ae4a24c9489949085.txt