Friday, August 21, 2009

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.

Thursday, August 13, 2009

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.

Sunday, August 9, 2009

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.

Friday, August 7, 2009

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...


Sunday, August 2, 2009

I want it

This weekend was the 20th OG&E Lineman's expo, I have went for the past 10 plus year and volunteer to work. We went up Friday night and stayed in the motel, I took 3 of my nephews to help out with Jeremy. We got pizza and the boys went swimming in the pool, Jeremy of course had a blast. Jeremy has been jabbering up a storm, and yesterday when we got out of the car there was a toy he left in the car and as we were going into the house, Jeremy said, "I want it". this morning Jeremy got in to his school supplies I had so carefully hid and I caught him taking the markers out of the box and told him they were for school and he needs to put them up and he said, "I want it" I told him I know he does but lets save them for school. I can't wait for school to start and see how much progress he makes, I know he is going to make great strides. I also can't believe that next Sunday, August 9 he turns 10 years old.