I have more inspiration come to me while washing dishes and running than almost anywhere else. Why is that? One night in particular, a few weeks ago, I had just finished washing dishes and sat down. The thought came to me to google FG syndrome. It happened to be on the list of possible syndromes the geneticist had in mind as he evaluated Ammon last September. (We haven't thought about syndromes for a long while. Our insurance has been back and forth over the last year with Andy's job change and we have been putting off tests. And actually our insurance with Riser wouldnt cover it anyway. ) The number one syndrome he suggested was Fragile-X. As I read about it, I had the distinct feeling that this was NOT what Ammon has. I hadn't even read about FG syndrome. This year has been very different. A lot of acceptance, healing, learning and yes...even joy! Not like the past 2 years of exhausting every avenue to 'cure' him and walking the dead end road of asking 'why? why is this happening?' I used to google all of his symptoms. Most of what would come up was the classic autism tale. As I sat there and read sites pertaining to FG syndrome I couldn't believe what I discovered. Ammon fits most of the symptoms...Macrocephaly(abnormally large head), small low set ears, wider spread eyes(this all sounds so mean-we love his little self) profound developmental delays, pointed fingers, hypotonia, cronic constipation ( because of malformations in that area). I was flooded with emotions. A myriad really. Is it strange that I am hoping that my child has a syndrome?Not just looking back on my pregnancy with him and critiquing every fine detail...always wondering if it was something I could have prevented.
The next day I called Primary Children's Hospital and talked with a lovely person named Tammy. For what ever reason she took it upon herself to take our case and run with it. She even gave me her personal number so I could reach her directly. By the next day she had re-written a request to our new insurance and spoke with our geneticist, Dr. Kerry ( who is about 80 years old and fascinating to talk with). He was confident that our insurance would cover this expensive micro-ray test. She told me to cross our fingers and we would hear back in 2-3weeks. O.K.!! Two days later she called me with excitement in her voice. "Guess what!!? We have heard back and they approved it!!" She said , in all the time she has worked there ( who knows maybe its only been a month) she has never seen an approval that fast. HOT DOG! Last thursday, November 18th, we took him to the lab at Utah Valley and they drew his blood. Now we are waiting. I keep telling myself...either way it will still be our little angel-boy Ammon, but it would be so very nice to know.
