Luke's MRI

Today was Luke's MRI. The results showed that his spinal cord has indeed been damaged at the c1c2 area. Dr. Rozzelle suggests a c1c2 internal and external stabilization of the c1c2 using a metal plate and rod attaching the base of the skull to the c1c2 and a halo that will hold his neck and head in place for 2-3 months. The metal is the internal stabilization and the halo is the external stabilization. The hope is that the bone around the base of the skull and the c1c2 vertebrae will grow together creating a stable area around his spinal cord preventing further damage. Dr. Rozzelle also says this surgery should be done sooner rather than later due to the current condition of the spinal cord. He also understands that this is a major surgery and Gary and I want to get a second opinion. He even suggested a few drs for us to contact.


Gary and I are going to talk to Luke's geneticist- who understands Luke's bone disorder best, and send the MRI, CT scan, and x-rays to a couple of pediatric neurosurgeons to get their opinions. We just want to be sure this surgery is the best solution for Luke's problem. After getting these dr's opinions, we plan to move forward with surgery to protect Luke's spinal cord.

Dr. Rozzelle has suggested we put Luke in a neck brace until we decide when to do the surgery. Thankfully, Luke likes the neck brace and thinks it's "cool". :0)

Some details of the surgery Dr. Rozzelle suggests: It will be about 4 hours. He will then go to ICU for a day or so. Then he will be in the hospital for a week or so. After that, Luke will get frequent MRI's and CT scans to see if the fusion is working. The halo will be on for 2-3 months and then come off. That's what we know so far. This is barring, of course, any complications.

Also, this surgery may not 'work'. Meaning, the bones may not fuse. If they don't fuse, another surgery will be performed. The chances that a second surgery will work are very low.

Please pray with us that the other opinions will be helpful and point us in the right direction. Also, that if the above mentioned surgery is the one done, that it will 'work' the first time. Gary and I also ask you to pray for our family as we draw closer to one another for support and encouragement. We haven't figured out the best time or way to tell Luke about this. Please pray for that, too. It will be a major ordeal for Luke to have to understand and accept. We are praying for guidance in this.

Again, thank you for your prayers. Thank you for your support and love during this time. We praise God for His provision and for protecting Luke thus far! He is a good and mighty God!