James said I am getting slack on the blog and need to post something.

Something.

Oh, and here is something else. Please pray for Bean, he goes in tomorrow morning for phase one of follow up on AAI. If you were reading last year you may remember this, followed by this. Tomorrow, another x-ray. Later, CT and MRI.

The little girl to the right, Kennedy, is on her way to Shriner's in PA. She is about to undergo the spinal surgery we thought we were facing with Wil. She has AAI, atlanto-axial instability, as well as AOI, atlanto-occipital instability. The instability between her occipital bone and the first vertebrae is so significant that when diagnosed she was placed in a neck brace until her surgery in order to protect her from a "major spinal event." Her mom, Renee, has been jumping through all the hoops for the last several weeks to prepare for this surgery. Renee by the way has three other children, Kennedy is the third, and her husband is currently serving in Afghanistan. He will, however, make it back for a short leave to be with the family during Kennedy's surgery.

Please check Renee's blog to read more about Kennedy. This little girl has been through a lot in four years, including leukemia. If you are a pray'er, please, pray for Kennedy and her family. They will be living in a hotel for a month to be close to the hospital for the weeks following Kennedy's surgery. Do I need to tell you how challenging this might be with four kids? Adjusting to the halo will be a big deal for them all as well. So, check in with them regularly and if you can leave a comment to encourage them!

He will be out in no time. We were grateful they did not have to intubate. The goal was general anesthesia through some breathing contraption but if he put up a fuss they were going to have to intubate. No one wanted that considering the whole reason we were there was neck instability. Only one issue came up that we had to push on a bit. The neurosurgeon that ordered the scans did not order a flexion and extension view. I was given good advice by Renee to make sure that we get those views, otherwise we will end up having to repeat the scans. Dr. Betz also wanted those views. At first the tech said, "if Dr. Smith didn't order it we can't do it." We politely pushed this point explaining our reasons. Reminding them that we don't want to have to repeat these costly tests, etc. After discussing it with the Radiologist they agreed to do flexion and extension. So yay, small battle won. And again, many thanks to Renee for giving us the heads up on that one!

On the other side of it Wil was happy again. Well, once he got something to eat that is. He was downright crabby when he woke up. But we won't show that side of him. :)

And now we are back in waiting mode. We took two copies of the scans with us. Dr. Betz should receive his copy tomorrow afternoon and once he reviews it will contact us. Our neurosurgeon here should be in touch with us some time next week. We are told if we don't hear from him by Tuesday to call. Hopefully by the end of next week we will have some idea of our next step.

And then Sunday we leave for vacation to Boone, NC. Ten days and counting!!

Tomorrow morning Wil has his CT and MRI. This should answer a few more questions for us about our next steps. We will also be sending copies of the scans to a doctor at Shriner's Children's Hospital in Philidelphia. This doctor was recommended to us by a friend from the Down syndrome community, Renee, who has a daughter, Kennedy, about to undergo spinal fusion for AOI and AAI. Dr. Betz has a great deal of experience in spinal fusion and has agreed to review Wil's scans. We are so grateful to him for that. And to Renee for pointing us toward him. If you have some time please say a prayer, or two, or three for Kennedy. If you take some time to read her story you will quickly see that she has been through a lot in her four years.

We will likely not get any definitive answers tomorrow but when we do I will let you know.