Jeff's new surgery plan

Here is the new game plan for Jeffrey. We went and saw the Neurosurgeon and it looks like we are going to go for a more permanent solution to the problem with the tone in Jeffrey's legs. We are going to do a Rhizotomy. Most people have not heard of this so I thought I would post a quick explanation on what it is:

A rhizotomy (ɹaɪˈzɑtəmi) is a neurosurgical procedure that selectively severs problematic nerve roots in the spinal cord, most often to relieve the symptoms of neuromuscular conditions such as multiple sclerosis, spastic diplegia and other forms of spastic cerebral palsy. In extreme cases, a rhizotomy may also be considered for a person suffering from severe back pain or a pinched nerve.

The sensory nerve roots are first separated from the motor ones. Identification of the nerve fibers to be cut is then made by means of electrical stimulation. The one(s) producing the pain or other problems are identified in this way, then selectively cut.

In spasticity, rhizotomy precisely identifies, targets, and destroys the damaged nerves that don’t receive gamma amino butyric acid, which is the core problem for people with spastic cerebral palsy. In this case, those nerves which, due to not receiving GABA, generate unusual electrical activity during the testing phase are considered to be the source of hypertonia, and are cut, while the remaining nerves and nerve routes carrying the correct messages remain fully intact.

We will be slowly lowering the dose of his Baclofen and hopefully, we will be able to take the pump out of his stomach at the same time as the Rhizotomy. Since this surgery is more intense and requires more time to be precise, it looks like the operating room is booked for quite a while out for this time chunk. SO....we are waiting for both of his doctors to pick a date they are both available and the operating room is available. We will keep you posted on the time frames we are looking at.

Jeffrey is in pain and his legs become quite spastic if we don't get him flat on his back for several hours over the course of the day. We have such great support from family and friends who want to help him through this difficult time! We have decided on two things that everyone can do to help us. #1 Just pray for Jeffrey. He needs all the help he can get to go through the next couple of months. #2 We know that most of you will be fasting on October 12th since this weekend is General Conference. Please remember Jeffrey in your fasts. We hope that as a collective effort on all of our parts, we can help Jeffrey get through this as smoothly as possible.

Jeffrey is such an incredible young man who brings so much joy into all of our lives! I am in awe everyday at amazing he is and how grateful I am that he is in our family. He reminds us that we all need to be better people. He handles the pain he deals with on a daily basis so well and hardly complains about anything (except when we sing Happy Birthday!). Jeffrey touches so many lives in a variety of different ways and we are so blessed to have him in our family.

Thanks to all of you for your support and love during this trying time. So many of you want to help but to be honest, prayers and fasting are all anyone can do to help right now. Thanks for your love!!!

PS Vicki, thanks for the call. It was so great to talk to you and to once again be reminded of how lucky I am to have you as a friend.