We have spent the last week at home in Alabama with our family and have had a wonderful time. We came to town for me to be in a wedding of two of my friends from med school/residency. The crazy thing is that the groom is from Alabama, but I didn't meet him until residency in Oklahoma. The wedding was beautiful and we had a nice one-night vacation from our kids. We love them very much, but as you all know, everyone needs a break now and then. We've also been able to visit with some other friends and family. It has been a very nice week. We are leaving tomorrow morning and heading to Little Rock. We're going to visit a school there on Monday that is for special needs kids that we're considering for Will when we move there next summer. Then it's home to Tulsa. Sorry this is such a short update. Hopefully there will be more exciting stuff to share soon.
Neuro Update
Surely by now you have come to expect the 4-6 week breaks between my posts. My appolgies. Life is crazy busy, and I've just come off two straight months at the hospital. Anyway...
Will and I left Tulsa this morning at 5:30 to drive to Little Rock for his appointment with his neurologist. The drive went well; he slept for the first 2-2.5 hours. Once we were in with the doctor, she began to notice some changes in his neurological exam, changes that weren't good. His deep tendon reflexes are increased from his last visit. He also had some motion that shouldn't have been there (when she checked reflexes on one leg, the other leg moved). Then I told her about how I've seen Will's leg move/twitch spontaneously 2 or 3 times over the last few months. All of this plus his very unsteady gate lead her to believe that lab work and imaging studies were needed. She acted like none of this was a particularly good thing. She drew the lab today to check for chromosome problems and other genetic issues (apparently the technology is much better since the last time he had this done) and also a muscle enzyme level to see why he is having some weakness. She also wants us to come back to Little Rock to have an MRI of Will's head and entire spine done. This will all be done either under general anesthesia or at least sedation. Point being, it will be an entire day affair, and I don't know when yet. It is so hard for me to get time off to take him there, but we'll work it out. After all of this, it left me scared and worried. What if we're wrong about what we think is going on with Will and it is actually something worse? What if it is progressive? It just doesn't make since. He's been doing so well with his communication lately, but his motor stuff has been off. I don't know what to think. I mean, I just want an answer. But, I want the answer to be something we can deal with. Anyway, please pray for Will. Pray that the lab tests will come back quickly and that they will give us answers. Pray that the MRI's will get scheduled quickly and at a time that I can go and be with him. I guess that's all for now. I'll update more when I get results.
Will and I left Tulsa this morning at 5:30 to drive to Little Rock for his appointment with his neurologist. The drive went well; he slept for the first 2-2.5 hours. Once we were in with the doctor, she began to notice some changes in his neurological exam, changes that weren't good. His deep tendon reflexes are increased from his last visit. He also had some motion that shouldn't have been there (when she checked reflexes on one leg, the other leg moved). Then I told her about how I've seen Will's leg move/twitch spontaneously 2 or 3 times over the last few months. All of this plus his very unsteady gate lead her to believe that lab work and imaging studies were needed. She acted like none of this was a particularly good thing. She drew the lab today to check for chromosome problems and other genetic issues (apparently the technology is much better since the last time he had this done) and also a muscle enzyme level to see why he is having some weakness. She also wants us to come back to Little Rock to have an MRI of Will's head and entire spine done. This will all be done either under general anesthesia or at least sedation. Point being, it will be an entire day affair, and I don't know when yet. It is so hard for me to get time off to take him there, but we'll work it out. After all of this, it left me scared and worried. What if we're wrong about what we think is going on with Will and it is actually something worse? What if it is progressive? It just doesn't make since. He's been doing so well with his communication lately, but his motor stuff has been off. I don't know what to think. I mean, I just want an answer. But, I want the answer to be something we can deal with. Anyway, please pray for Will. Pray that the lab tests will come back quickly and that they will give us answers. Pray that the MRI's will get scheduled quickly and at a time that I can go and be with him. I guess that's all for now. I'll update more when I get results.
