We had been unable to access this website since July of 2013 because of an issue with the login info.  I'd tried to get the problem worked out on multiple occasions, but something always came up and I would lose track of what I was doing.  We are back now though so we'll do a quick update.

Jacob is now almost 22.  Only the youngest of our six kids is still at home.  We stopped homeschooling when I went back to work about 6 years ago.  Jacob graduated from a hybrid charter school in 2018, having gotten his drivers license not long before that.  I see him once every week or two lately and really enjoy the time I get to spend with him. 

Jacob and I traveled almost literally all the way to across the country this month to meet 16 year old Connor, who also has Carpenter Syndrome.  Like them, we had never met another person with the condition. 

We arrived at Washington-Dulles airport in Virginia at around 5:30 AM on July 20th.  We picked up our rental car, a brand new Nissan Frontier pickup, and were on our way.  Bad timing, I know, but it occurred to me at that point that I probably should have picked up a road map or two and checked local traffic rules!  Oh well... too late at that point.  Luckily, with a bit of common sense, an excellent driving record, GPS, and Jacob with me, we were fine!  We got turned around a couple of times as we neared our destination, and then stopped for breakfast at Bob Evans diner, but eventually found our way. 

We spent a good part of 6 days with Connor, his mom, dad, and various other family members and friends.  We attended two birthday parties for him.  At the second of which a photographer and reporter from their local newspaper were putting together a great article.  We went to church with them in an amazing old building that had been used as a hospital during the civil war.  After visiting the National Aquarium in Baltimore, MD, we ate at Bubba Gump and took pictures with a giant Bumblebee statue at the Ripley's Believe It or Not museum.  On the way to the National Zoo in Washington DC Jacob dropped his IPod!  We stopped at the MARC security booth on the way back out and to our utter disbelief, the guard had found it, remembered seeing Jacob with it and gave it back!  We decided to visit the Smithsonian Air and Space Museum in Chantilly VA, instead of the White House.  There we saw our first IMAX movie, the space shuttle Discovery, Enola Gay, a SR71 Blackbird, and so many other amazing things.  All that with some miniature golf, multiple shared meals, lots of visiting, and showing of baby pictures in between. 

Jacob had never flown before and was really excited about it.  He loved that huge thrust of power at takeoff, best.  He has the most amazing sense of direction (which is good, since I don't seem to have any).  This was something Connor's mother and I both got a kick out of because Connor is also a great navigator, and like me, his mother is easily lost!  The boys spent much of their time together playing on their IPods and watching movies, with an occasional tickle fight or wrestling match over the TV remote breaking out. 

Finally, we had to say goodbye and headed back to our motel to get ready for a very early flight.  We were exhausted when we landed at the Sacramento International Airport, where we were met by daddy and the other kids, but the trip was one amazing experience after another!

We hope to get together again next year, maybe traveling to the mid-west to meet another child with CS.

Jacob was born in a small northern California hospital, in 2000, but was transferred shortly thereafter to UC Davis Medical Center in Sacramento.  He spent 13 days there but unlike the experience many families have, because of the big city staffing, he had a positive diagnosis within days.  Although many of the manifestations were quite obvious, numerous examinations and tests were performed, finding among other things, amblyopia or a lazy eye (like Paris Hilton), undescended testes, a horseshoe kidney (like Mel Gibson) which has never given him any trouble, extra fingers and toes, many of which were webbed, a minor heart defect, and craniosynostosis (no "soft spots", like baseball player Jorge Posada's son). 

Between the Carpenter Syndrome and other unrelated issues, his prognosis for any sort of productive life, was bleak.