Tom is a Viking!

Much to tell. Yesterday morning I spent almost 3 hours talking to medical people looking for answers about who was responsible for different parts of Tom's care. I think we've got it solved. This morning we met with a gastro doc who checked the tube and declared all is well. I learned that the burning Tom is experiencing in his throat is due to his inability to swallow effectively. When acid comes up the normal thing to happen is for saliva to wash it back down but Tom can't do that so we are learning how to take care of it other ways.

A friend from church stopped by for a short visit that was very appreciated. Kylisa brought dinner last night. It tasted so good. Funny how unsympathetic I have been for single people who say cooking for themself is hard to do. No more--now I understand. It was wonderful to spend time with Jackson and Grayson. Chris was also a big help working out our budget. (Thanks, Chris!)

On our way to our appointment at the UW today Tom asked me why we were going. I told him it was to learn about ALS. He asked me for the first time to explain it to him. I asked if he would like to wait and hear about it from the nurse or if he wanted to know what I know. He pointed to me. Instant prayers went up that I would have the right words and emotional strength. This was the first time he really seemed to want to know. I explained that ALS is a degenerative disease that attacks the neurons so that muscles are no longer able to receive communication from the brain. He asked if there was a cure and I said no. But there was lots of help to deal with whatever came along. That's some of what we were going to learn today. I cried but then reminded him what we shared just before he went into open heart surgery (and God brought him back from that)--he loves Jesus, I love Jesus, Jesus loves us. We're going to be ok. He agreed and made a fist and pumped his arm to say he's not giving up. I also said that all I wanted from him was his smile. In fact from now on every time he smiled at me he was saying he loved me. (Warning Kemper--this is the mushy part!) Tom turned to look at me with a HUGE cheesy smile on his face! That much?! We've been enjoying smiling at each other all day!

We met with the neuro doc's assistant. She gave us a one hour education on ALS along with lots of reading material. One of our assignments is to learn to ask for help with something every week. She said we could not do this on our own and we believe her. Already people have offered to do whatever they can to help and we are very grateful. We are going to begin a drug called Riluek which has the potential for slowing the disease down. We will also meet with a respitory specialist at UW. We will begin being proactive in searching out resources we might need in the future. We are hearing there is a lot of help in the area. ALS seems to have a mind of its own with each victim. We're told it could just stay where it is in Tom OR it could spread to his arms/legs. After explaining more about the disease the nurse left the room to get something and as soon as she did Tom pumped his arm and said, "They don't know me!" And Kemp and I agreed! Tom is a Viking and he has a mighty God. Who knows what they might do together?!