Update 16: April 24, 2007
Greetings from Phoenix
As a constant worrier (Jeff, that is), and as someone who more often than not second-guesses his decisions, I've been struggling throughout the trip with whether we should have started this journey to begin with. We have no specific destination in mind for when we end the trip next month; just some ideas of where we'd like to settle down. We don't have jobs lined up. We don't know what kind of medical help will be nearby for Zane. But driving back into Phoenix after a year away put my fears at rest. We had definitely made the right decision to leave. The congestion, pollution, and over-development hadn't miraculously reversed themselves while we were away; they were worse. It seemed to take forever to drive the shortest distances to visit friends and family or even to go grocery shopping. Susan and I agreed that after being reminded of what we left, we're glad we no longer live in Phoenix.
Which is not to say that Phoenix is without its virtues. We have a lot of friends there, many of whom we saw at a get-together at our friend Sally's house. There's the easy-access hiking trails of Camelback Mountain and Piestewa Peak, which we took advantage of numerous times. And there's a lot of climbing relatively close. I got in four days of climbing; Susan got in one day; Justin even tied in for a short route before deciding he'd had enough. Still, those things aren't enough to make up for what we consider to be the area's other problems.
And speaking of Sally, after learning of Zane's diagnosis last December and hearing of us talk about the blanket we received on Christmas day from local middle school students in Florida, she started Blankets of Love for volunteers to make and deliver blankets to neonatal intensive care units in the Phoenix area. The Scottsdale Tribune heard about Sally's project and wrote an article about it and the inspiration Zane provided. The article is available
Here. There is one small problem with the article: a misquote attributed to me. For the record, I told the columnist that if the issue was that we simply needed blankets, we could go buy a hundred of them at Target. My point being, it was not about the blanket itself, it was the gesture that was important. I did not say anything about buying better blankets at Target, and I am disappointed by his misquote. Other than that, it's an accurate article that does a good job of telling our stories.
Part of our return to Phoenix was for doctor's visits. We took the boys to Justin's pediatrician, where both of them protested the shots they received. We took Zane to a neurologist to make sure the seizure activity we had witnessed back in March (but was now under control), was not something that needed special attention. We determined from that visit that we don't need to be doing anything special for Zane's seizures. There is no need to be testing, medicating, and monitoring him unless things get much worse. We also determined during that visit that the neurologist was a moron. We explained that Zane's bottle feeding has all but ceased, and we were wondering if the seizures were partly to blame. She responded by relating a conversation with her colleague in which they determined that feeding problems such as Zane's were just nature's way of keeping the population under control. She did an excellent job of demonstrating that eight years of medical school and hundreds of thousands of dollars in tuition don't guarantee that you'll turn out to be any more intelligent than the rest of us.
Zane is doing very well, all things considered. His seizures have dropped off in the past couple of weeks, and he continues to eat and sleep well. Lately, he seems to have a penchant for projectile vomiting, but other than that, things are going well. With his chubby cheeks, double chin, and fat little legs, along with his increased periods of cooing and smiling, he finally seems at almost five months old to be like a typically-developing one- or two-month-old. He clearly is not the same as other kids his age or even kids younger than him, but he continues to hit his own milestones, and he amazes us at how well he's doing. We don't lose sight of the statistics associated with Trisomy 18 kids, but Susan and I and hundreds of others continue to pray for Zane, and it seems to be working.
Justin is doing well, as always. He's still rambunctious, talkative, energetic, and at times exasperating. He likes to be outside, as he always has. He continues to be a great source of entertainment. He's taken to putting himself in time out when he does something wrong. One of his newer sayings is "I'm not talking to you, I'm talking to Daddy", if Susan answers a question he directs at me (or vice-versa). And he's really gotten into rhyming. He'll pick rhyming pairs of words out of the air and announce that they rhyme. Sometimes, especially on hikes, rhyming becomes a good way to keep him occupied.
And he's turning into a good little hiker. Most of the time I will carry him in a carrier on my back, but we'll also give him a chance to hike on his own. At the Grand Canyon, he set his personal best by hiking 1-1/2 miles unassisted. Not bad for someone who is not even three years old.
Lately, he's been asking "what o'clock is it?" as he looks at the clock, and Susan has tried teaching him the basics of telling time. The other day, he helped Sally as she trimmed brittlebush in her backyard, repeating "trimming truffle trees" as he worked. This was a reference to The Lorax, which talks about people cutting down truffula trees. One of his favorite sayings has become "Daddy, don't drive yet" whenever I start the car or RV and Susan is not yet in her seat. He's always looking out for his mom and his little brother. And he keeps on talking. The other day Susan told him he was like Donkey in the movie Shrek, the character who continually talks and bounces around non-stop. In response, Justin looked at his arm and commented, "I'm not brown" (like Donkey), "I'm butterscotch."
After being introduced to the concept of milk and cookies after dinner, Justin enjoys his new pastime of playing Uno and eating cookies before going to bed. He plays off of Susan's hand, and generally grasps the basics of the game enough that he can lay down the cards each round without much assistance from Susan.