The Weather Outside is Frightful.............

We took Paul to Charlotte on Tuesday for his final check up with Dr. McLanahan and Dr. Matthews. At least, that is what we thought. In relation to the shunt, it was a final check up and there is nothing more to be done other than monitor it. It is working very well. I talked to Dr. McLanahan about the problem we noticed on Paul's forehead. He has long indentations coming down his forehead on the left side. Dr. McLanahan said it is due to the fact that he did a craniotomy on Paul when the reconstructive surgery was done. The bone has not grown back and it will be watched closely. On a CT taken last August, he showed us the area where the scars are on the skull. He said that he is not concerned at this time about that. Another CT was taken and the best thing he noticed was Paul's ventricles are continuing to reduce in size, which is a main goal. He said that he would not adjust the shunt at all, since Paul's headaches were continuing to improve. He said he is not satisfied with Paul's continued problem of having headaches 24/7, even though they are so low. He will consult with Dr. Matthews about the scars and headache issues and would get back with us.

We went to see Dr. Matthews and he checked Paul's eye function. He encouraged Paul to continue working on the exercises that he was doing at Shepherd, as he still believes Paul will be able to coordinate his eye movement to a much finer degree. He will need to do a few more minor surgeries to shave away scar tissue above the eye socket, where there had been so much damage. He feels that is what is keeping Paul's eye from moving up or down. He did not give a specific answer about the issue of the scars from the craniotomy. He needed to see the current CT and would discuss with Dr. McLanahan. I was left with an uneasy feeling, but immediately put it in God's hands and asked Him to guide these doctors.

Paul had more electrical stimulation done while we were there. Anna, Dr. Matthews’ associate, talked a lot about keeping Paul on a very healthy diet. It is important to concentrate on keeping the liver healthy after all the medications he has been on for so long. A good healthy diet will go a long way to accomplish that. Nothing new about that statement! But Paul was listening this time and he is not as argumentative about drinking a lot more water. He continues to have a problem with realizing he needs food or water. He does not really feel hunger. He knows it is time to eat and he loves to enjoy a meal with us, but he doesn't ever say he is hungry. One day this last week, when he said his head was hurting, I asked him if he had eaten breakfast or lunch, he said no. When asked why not, he said he hadn't thought about it. He had not had anything to drink either.
Hunger and thirst do not seem to be felt.

Anna gave us more information about the electrical treatment. As it turns out, she has a home in Atlanta also. She is going to bring us a preprogrammed machine and will give us the training on administering this for Paul. We will be able to do this for him daily. They want to give this treatment a huge effort and then if that does not work, we will discuss the issue of nerve replacement surgery. That is a major surgery, one we are not going to consider without much prayer and consideration. We would like to see more healing overall, before Paul gets knocked back down with a surgery. He said he would be very willing to have the surgery if it meant he could blink and smile again. He has become very conscious of how he looks and is bothered by it. I know how he feels. I had facial paralysis for 11 months when I was 27 years old. I felt very weird and it is tough to be stared at. I did get 80% recovery and was so thankful to God. I had only a tiny glimpse of the world in which people with permanent deformities live. It is so difficult having limitations on normal movement. Now that he doesn't use tape on his eyelid during the day, most people don't notice anything is different while he wears his sunglasses. I know that is why he prefers to keep them on. We pray for the guidance in helping Paul make the decision about what to do next in regards to this major surgery.

We have completed the therapy at Shepherd for now. They gave Paul instructions for continuing his therapy at home and will see how he progresses. They will schedule an appointment for his neuro-psych evaluation. Paul will not be able to go to school this Spring. We were so disappointed about it. I had to trust God there was a reason. Since Paul had been out for 2 years, he needed to reapply. That deadline was missed when Shepherd Center started to look at getting him back in school. One thing they noticed was Paul was very reluctant about going back. While he was ready cognitively, emotionally it may have been premature. He had been asked to do some things in regards to registration and he did not complete the tasks. We were not aware of this. It was a combination of things that caused the deadline to be missed. I feel in my heart that it must not have meant to be. After our last appointment with the Charlotte doctors, it seems better that they complete the work of fine tuning the functioning of Paul's eye. It will help Paul be more successful when he does take college courses. In the meantime, Paul will register for the Summer session. That is why the neuro-psych evaluation was put off until Spring. The results will be current for the cognitive, emotional and physical state that Paul is in at that time. The results will be given to the school so that they can assess Paul's needs and match them with the available help.

In the meantime, we will continue to provide daily course work for Paul to do to keep some skills needed for college. He has taken an active role in that. He and Jon purchased a Nintendo DS which has a program that helps to build word recognition, spelling and use. We have noticed that Paul is limited in word recall and this is a fun way to help him remember words he has forgotten. Another useful thing we where shown is a Timex watch that will allow him to transfer data from the computer, where he programs his weekly schedule. The watch will then send the messages throughout the day to remind Paul of what he needs to remember to do next, since he still has problems with short term memory. It was an issue of concern for his therapist at Shepherd, in regards to his being ready for college. We remain hopeful that there is still a lot more progress he will make. It really does take time and it is a tough lesson in patience for us all.

I have to say, when the doctors and staff saw Paul last week, everyone of them commented on how huge a leap Paul has taken since they saw him last. Both doctors seemed relieved and encouraged that he has come this far. It was fun to watch their faces when they saw him as they entered the room. He has gained some weight, has great color and HAS A GOOD HAIRCUT! I know Paul was happy to hear them talking so positively about how good he looks and how healthy he has become.

On Friday, we got to focus on Michael and the Junior National Olympics in Kansas City. As Jon, Michael and I were lifting off from Atlanta, the pilot made an announcement to welcome aboard all the Olympic athletes who were on this flight. It was so fun to hear that. We noticed there were at least 7 young men on board. Michael and his friend, Chris, attend the same college and they both qualified for the event. We landed in Kansas City and walked outside into the freezing cold. It became instantly clear that we were not prepared for the weather. The gloves, hats and windbreaker coat I had on were no match for the biting wind. I should have known better since I was raised in the northern state of Wisconsin. As we came through the clouds upon landing, Chris and Mike noticed the snow on the ground and instantly turned to look at each other and I saw Mike mouth the words, "Mother of God". Neither of them had run in weather any colder than 40 degrees and it became clear that this was going to be one tough race. We drove out to the farm in Perry, Kansas where the event would take place and they walked the trail. It had snowed the day before, and the trail was now icy and muddy. Michael said that he didn’t think he would do very well, but would try hard to make it worth the money spent to get there. The next morning, we woke up to 20 degree weather, with the wind chill factor making it feel like 10 degrees. We got up early so we could go to Mass on the Feast of the Immaculate Conception, a holy day of obligation. We used the GPS to help us find the closest Catholic church. It took us to an abandoned building! I was really sad that we were not going to be able to make it to Mass. As we sat in the parking lot, Michael remembered the names of the streets of an intersection that someone had mentioned might be the location of a Catholic church. We entered that information and drove as quickly as we could on the icy streets. We got there and unfortunately, I parked on the wrong side of the huge church building. We tried to walk up the stairs on one side, but it was too icy. So we walked back around the other way and had to climb a very steep hill in the icy snow, while holding onto the wall of the church to keep from slipping. Our tennis shoes did not help one bit! We made it to the top and got into church right before the Gospel. We were frozen. I didn’t take time to completely dry my hair and as Mass continued, I started to shiver so hard from the chill of it. I prayed with complete thanksgiving that heaven helped us find the church and that we had food and shelter and warm (at least for Atlanta weather) clothing to wear. I was so aware of our blessings in life! As I sat there thanking God, I was picturing how hard it had been to get inside the building. It would have been so easy to just quit and use the excuse that we had tried our hardest and to have turned around when we first were lost. But I felt so compelled to find the church and God provided Michael with the way. We struggled in the freezing drizzle to climb up that hill, keeping our balance with use of the church building. What a perfect visual aid for me! It has been the church – all of our brothers and sisters in Christ – who we have clung to as we climbed so many hills. I thought about how I always want to have that desire to stay close to God, no matter how hard the trail. I prayed that my desire to receive the Body of Christ that day would grow stronger with each day I lived. I know that is how Jesus wants us to desire Him in every moment of our life. I felt such joy being there with Him that morning. On that beautiful feast day of Blessed Mary, I was sure She had had a hand in getting us to Her Son! Days later, I was reminded that a Mass was said for Jon and me at Ave Maria on Friday night. James and Shannon were there praying for us. I know their prayers helped us receive Jesus at Mass on Saturday. Oh, that wonderful power of prayer!

Michael and Chris did pretty well, given the conditions and their lack of experience in the cold. They placed 120 and 133 out of 173 runners. The winners came from Montana and Idaho. Not a surprise……….smile. When Michael crossed the finish line, we were so proud of him. He has been a cross country runner for only 4 months and was in the Jr. National Olympics. Like Paul, there is a lot of hope and promise for his future. He came out of the finishing gates and hugged Jon so hard. He thanked us both for going through all the expense and trouble of being there with him. Yes – it was a priceless moment seeing his joyous smile and receiving those hugs.

We pray dear brothers and sisters, that everyone continues to seek God and His will, with an Olympic size effort. We pray no one loses their way on the trail that will allow us to see His joyous and loving face at the end of our journey.
You don’t want to be left out in the cold.

Love,
Jon and Rebecca