For those of you who don't know, Jim has been accepted into a National Clinical Trial for hemiplegic migraine sufferers. The Headache Care Facility is in Springfield, MO. It is headed by Dr. Curtis Schreiber who is the wonderful man we saw four years ago after we started on this journey. In 2004, Jim had a stroke induced by the medicine he was taking at the time for a hemiplegic migraine. Ever since, we have been searching for triggers and relief that will prevent/lessen these non stop headaches that affect his speech, cause right sided facial and body paralysis, and disrupt his cognitive thinking not to mention incredible pain which he is so good at covering. This man is NOT a complainer. The only reason I can guess he has a headache sometime is when his face is literally drooping.
Jim, Carter, Emma, and I drove to Springfield from Independence, KS on Sunday night. We were so blessed not to have driven in any bad weather. The second after we walked into our room at the Residence Inn, it started to POUR rain, then sleet, and then snow. Jim started his long day with 5 doctors on Monday morning. After many tests, questionnaires, exams, he seemed to them to be the "perfect" candidate for this clinical trial. He was sent home with an electronic diary and he has to record how he feels every day and to qualify for the surgery in January has to have a minimum of 15 headaches out of the next 30 days. (Sadly, that won't be a problem for him.) If all goes as planned, he will have a surgery on January 14th to implant a peripheral nerve stimulation device permanently in his body called an "Advanced Neuromodulation System". The device will be placed under the skin in his hip or back and then a wire the size of yarn, will be threaded up his back and then 4 electrodes will be placed into the occipital area of his brain specifically the occipital and facial nerve area. It is the hope that with the device activated, it will electronically keep the nerve from firing and decrease the pain and the symptoms that occur from the headaches. Though it is outpatient, he will have 3 incisions and is required to shave the back of his head. He is also going to be given local anesthesia because he must be conscious for the entire procedure in order to communicate with the doctor. The neurosurgeon we met with at the end of the day was really great and I feel completely comfortable with him doing the surgery. He was very jovial and friendly.
One of the catches because this is a clinical trial, is that the doctor and us will not know if the actual device they implant is going to be turned on because they need to have a few placebos in the trial. My prayer is that after all of this, we are so hopeful for relief that Jim device will actually be turned on. Please join me in praying for that. 12 weeks after the surgery, all the devices will be turned on however I am specifically praying that the one Jim has is "turned on" at the time of surgery. We are both looking at this as an amazing opportunity that God has provided as a prayerfully a "miracle" cure from all of this. It will also allow him to hopefully get off all of the medicine he is currently on to help curb these headaches and the awful side effects. One of the most amazing parts is this surgery literally costs several hundred thousand dollars and because it is a clinical trial, we don't have to pay a dime. Insurance doesn't cover things like this because it is considered "experimental" so we are grateful for God in opening the door. Now honestly, I am anxious.....seeing the actual device and hearing what they were going to do was a lot more invasive than I had even imagined....even to the point of shaving the hair off with the incisions....but we are really praying this is THE CURE to all of this for Jim.
He won't be able to have an MRI or go through the airport security system because he will have an implanted device but those are just minor things compared to living without pain :)
On another note, Jim and I know that 2009 will bring changes in his job. Whether we are blessed to stay at COP or are employed with someone else please pray that we will listen as God directs our steps (specifically Jim's) and that God will place Jim exactly where he can best be used to glorify Him. I know God will provide for our needs as He is Faithful. It is uneasy to face such things in times of economic chaos in our country and world (especially for me as we have two family members with great medical needs and insurance coverage for Carter and Jim is really a blessing). If God leads Jim to resume traveling every week, please pray for our family unit as we have really grown spoiled to being able to see daddy home most nights now. Pray for me not to be anxious as we face these two huge things.....I must confess I am a little overwhelmed with life this week. As I struggle with my humanness, my sinfulness, and battle my lack of faith, I am reminded constantly as I look back over our lives at God's amazing provision, his love, and how He works ALL things for His glory. Change is the only thing that is guaranteed in this life. I pray every change and road I walk in this life brings me one step closer to Him. We are SO AMAZINGLY BLESSED and I am SPOILED!
I will close with a little letter Emma and I got from Manchona today. I sat on the floor with Emma brought to tears in humility over the things I was worried about reading her letter. Manchona is our 5 year old girl who we sponsor in Zambia.... Emma, "Greetings to you and your immediate family in the name of our Lord Jesus. I sincerely thank you for picking me from among many children as your child in this sponsorship programme. I live with my parents and my young brother in a rural community about 69KM east of Lusaka our major city. I live in a two roomed house made of burnt bricks and a roof of iron sheets. My parents are peasant farmers who grow maise, groundnuts, beans, vegetables, and sweet potatoes. We keep a few goats and chickens as livestock. I enjoy play with toys and baby sitting my younger brother. I would be pleased to hear from you any thing any time. May God bless you. " The sponsor goes on to share how the families here now have clean water to drink because of improved water systems and malnutrition among the children is decreasing because they are teaching them better farming techniques.
The letter ended with a verse that just JUMPED off the page to me. It reminded me as I had literally been in a spiritual wrestling match with my anxiety today that I am to place my Faith in Him with everything....it is an adventure Isaiah 43:19 "Watch for the new thing I am going to do........" That is exciting to me....may I be moldable, flexible, and willing to go, to do, to change.