This past month has been a blur with teaching school, two babies, RB's doctors appointments, and RB's 3 jobs....and all the stress with RB being sick. (and the normal life stresses) First off I want to say how blessed we are. We both have jobs... And we have two little blessings. (The biggest & best parts of our lives.)
RB has been having some medical problems since spring, well actually a few years, but he really didn't notice anything until a couple years ago. He didn't go to the doctor until this year. After many tests, many prayers, many doctors, and lots of bills, he was finally diagnosed. Turns out, he was born with a type of spina bifida. Yea, we were in shock. Who would have thought. He's lived a normal life, played football, baseball, and basketball. (could've been seriously hurt) He's done so many things that could have damaged everything from waste down. It's still so hard to believe sometimes. Any little injury, hurts more nerves. On top of spina bifida, his spinal cord is tethered, and all the nerves end in a big lipoma. (a fatty tumor) The big tumor has his cord stretched all the way to his tailbone. (which is way too far) It is also putting pressure on nerves, causing damages. We visited with a neurosurgeon in Dallas that specializes in tethered cords. We were nervous going into the appointment, but at least thought we would get help, some answers. A fix. He explained how he would need to free the cord from the tumor. The problem, the cord nerves are all ending in this tumor. He thought it was too dangerous to do the surgery at this time. He was afraid of damaging any of the nerves from waist down. (could affect walking, but shouldn't paralyze him, but it could) He practically couldn't give us any guarantees. He was surprised when he came into the room, and RB wasn't in a wheelchair. Without surgery or fixing the problem, the tumor and stretched out spinal cord could cause more damages, just like it already has. He said any little injury to the cord nerves, could do damage. He said just riding a horse alone could cause injury.
So now back to the beginning, it's been about a month since his diagnosis. We've spent numerous amount of hours researching, we've said many prayers, and been added to many prayer lists. There are lots of people praying for us. We have looked at many neurosurgeons, spine clinics, and research hospitals. We've looked into Johns Hopkins in Maryland, it's rated number one. Number two is mayo clinic. We've been looking into Houston. There's a spine place there. It's just so hard, and so many decisions to know where to go or what they might tell us. We really like UT Southwestern, they have very smart doctors there, and the plus side, all their employees have been super caring every time we've been there. (Even the receptionist) They go out of their way to help us!
Wherever we go, if we find a neurosurgeon that can do this, we will have to relocate for a few weeks. (which will be very challenging, in many ways)
He has an appointment Thursday with a neurosurgeon from Texarkana, hopefully he can send us in the right direction.
Until then, lots of prayers, lots of love, and lots of enjoying our blessings.
Biggest specific prayer request: we find a neurosurgeon that can help RB.
