Test Results

Thanks to everyone who has politely prodded me to update. It seems every day is a swirl of information and sometimes a bit much to juggle. We have only received one test result back and its called a CD-57 which measures the natural killer cell for Lyme. 100 is low and the lower the number, theoretically the longer the body has been exposed to Lyme. Coleman's was 66, which in the nurse practitioner's eyes is a strong point to Lyme and also explains why a western blot would be a false negative.

Tomorrow, I am due to have the results of the Lyme panel that was sent to Germany. This test carries a lot of weight and probably the most definitive for us.

We are now discussing ultimate treatment options. The nurse practitioner is convinced that Coleman needs to be treated in a specific careful manner and that the treatment he needs isn't local. We are talking with the facility of her first choice to see if they will work Coleman in earlier due to his condition. There will be a bit of a wait either way and that time of waiting is actually valuable for us. We will continue to use meds here and focus on widening his world. The best way I can describe it is that both mold neurotoxins and Lyme spirochetes attack the brain so directly that there is fallout that you just wouldn't normally expect...until you read well written publications about Lyme and email other suffers and their parents. It gets all too clear then and is a haunting but somewhat comforting reminder that we're not the first to deal with this. We have to get Coleman in physical and mental condition to travel.

He did have a milestone today - after much emotional work, he met a new person today and that was a social worker from the visiting nurse group. She has been in our home a few times but never met Coleman. I felt today was the day and they had a good visit. He just kept looking at her and then he said, "sorry, it's just strange to see a new person." He was ultimately glad and talked to her and then said he had a friend. These moments come at such a great emotional cost but the connection is worth it. With that, his world was just a bit wider.

When you remember us over the next several hold-your-breath kind of days, I would be personally grateful that you would whisper my name along with Coleman's - we are knit together through thick and thin and some days it feels thin. God is our very present help in trouble and I realized this past weekend that it is not his plan to pluck us out of the eye of this nasty storm, but He is navigating us through it. I just never liked storms.