Update 21: December 30, 2008
A Brief Update on 2008
It's been over a year since our last update. I imagine that not many people visit the site anymore, but for those who do--and in the interest in keeping at least some current content on the site--here's another update. We're well into our second winter in southwest Colorado. Some locals claimed that last winter was the worst in 25 years. It certainly was a shock to us, after 20 years in snow-free Phoenix. This season is not expected to be as bad, but so far we've received close to four feet of snow, so who knows?
Zane celebrated his second birthday on December 22nd. This is an incredible milestone for someone who the doctors wrote off in his first few days of life. Trisomy 18 certainly isn't a curable condition, but we've learned that it isn't automatically a death sentence, either. Zane is generally happy and interactive. He is vocal, but does not speak, although he recently had started saying da-da-da-da. Any progress is welcome. He has physical and speech therapy on a regular basis in order to help him make whatever gains he's capable of. Our current worries for him are his diaphragmatic hernia and kidney reflux, both of which will have to be surgically repaired in time. He's about ready for another trip to The Children's Hospital in Denver, where we're slated for visits with at least six different doctors.
Susan recently added a YouTube slideshow celebrating Zane's 2nd birthday:
Zane's YouTube Video. (Opens in a new window).
Justin turned four in June. He goes to preschool in Bayfield two days a week, giving him a social outlet and in turn, giving Susan a break. He started soccer in the summer and we've been hoping to get him on skis this year. Reading to him every day has finally paid off, as he's now reading on his own. While some of this is reading from memory, Susan was surprised the other day when Justin picked up a new book from the library (which Susan had not yet read to him), and proceeded to read the entire thing, sounding out words and only twice asking Susan for help. Justin continues to be a great big brother to Zane, who adores Justin's goofy faces and voices when they're playing. Susan worked most of the year as the Communications Coordinator for the Trisomy 18 Foundation (
www.trisomy18.org). Due to insufficient funding, however, her position is being eliminated at the end of this month. This is a blow to us financially, but it's a good opportunity for Susan to look for something more rewarding. It is a challenge finding something that will allow her to work part time and still be home with the boys, but we're confident something will come along. She continues to work occasionally at the library in Bayfield.
I'm still working for San Juan Board of Cooperative Educational Services. I enjoy the job and my coworkers, and despite the long drive in from Bayfield, I like working in downtown Durango.
Overall, things have worked out well for us here. We still miss the road, and hope we can figure out a way to do it again someday.
Best wishes for a safe and prosperous 2009!
For a few photos from the past year,
Click Here