A Plan

Yesterday was our appointment with Clay's neurologist, Dr. Brandes. Clay's mom and I were there with his dad on speaker phone. We had been praying for specific things such as coming off the medicines and going to the clinic. The meeting with the doctor went well. She was supportive, but tried to keep us anchored in reality. She is happy to send us to the Diamond Headache Clinic, but cautioned us that Clay can go and perhaps start to feel better there, but then come home and fall back into his headache pattern, simply because while at the clinic he will be in a controlled environment and once at home it is obviously not as controlled. At this point we do not care what happens afterward. We are going forward with the clinic. We have an appointment on February the 7th at 1:00 to see one of the best doctors at the clinic. Also, Clay's doctor gave us a schedule so he can taper down and come off of his medications! He is very happy about this because the medicines give him such terrible side effects, so we look forward to no more side effects! He will have successfully tapered off all of his medicines by the 7th. Please pray that the tapering will not be too unbearable, as there will be side effects of coming off so many medicines. We are also going to have new MRI's taken of clay's head and spine before we go to the clinic. So that in a nut shell is our current plan. The Lord has really ordained the whole thing. The timing is impeccible and it is almost too good to believe. For example, I was supposed to enter a schedule in the computer at work a couple weeks ago for this coming February and March, but for some reason I was unable to do so. Now we know when we are going to Chicago, and my manager called today to help me figure out my schedule. All this to say that I will be able to go to Chicago and stay almost the whole time Clay is there without having to use any vacation days or take time off. My manager is very very willing to work with me if we end up needing to stay longer than a week. I am more than grateful for ALL of this. It takes off such a huge load in terms of figuring out work. I also believe that the appointment day is a miracle because it will be right after Clay has come off his medications so he will be a clean slate when we go. The 7th is on a thursday and it is the easiest day of the week for Clay's dad to get off of work, so that is another blessing ordained by God. This all seems to be coming together so beautifully and I truly believe it is because of all the prayers we have received. I am beyond humbled and grateful for everyone who is so concerned and committed to us through this. It has been a long long hard road and I am very thankful to have such wonderful friends and family.
Clay reduced some of his medications last night and woke up this morning with a headache level of 9. To put that in perspective the pain scale we use is from 0-10. 0 being no pain and 10 being unbearably debilitating pain. He never rates his head a 10 because one never knows if it might get worse, so 9 is basically Clay's 10. Most mornings he wakes up and his pain level is between a 6-7, and by each evening it ramps up to a 8-9. There are many days that he wakes up with an 8 or 9 and it remains this way for a couple of days, so it is hard to say that this morning's 9 is due to the decrease in meds or just another 9 day. My worry is that his head will be worse as we come off the meds, but as he says, it is always terrible so what difference does it make medication or not. I am trying not to give in to my worst fear of his head never getting better. Please pray that we start to see change soon. Some days it seems too much to bear. Clay's mom will be staying through the weekend to help us while he tapers down because I have to go back to work this weekend. We are grateful for her and all she has done to help us this past week. Also she will be staying in Chicago with us when we go, for which I am grateful so that he nor I will be alone.
I'll keep this updated better as we get closer to the time so that you will all be informed. Thank you for caring so much about us. We definitely feel it.

love sarah