Monday, April 07, 2008

Boston or Bust

We belong to a yahoo group consisting of other families or caregivers of children with 1p36 deletions. These parents are amazing, offering support and advice to virtual strangers on a daily basis. This fall the group will hold its second annual conference (we weren't able to attend last year's in Jacksonville) and we all voted on either Cincinnati or Boston for this year's location. Any guesses as to our vote?

If everything comes together as planned this will be a trip of firsts. Neither Troy nor I have have been to Boston and we have never traveled with Brady farther than the 1.5 hour flight from Phoenix to Salt Lake City.

In my perfect world we would take along a helper so Troy and I can attend the meetings without distraction and can sneak off for a Red Sox home game which will conveniently occur during our trip. Also, Brady will be a perfect angel on the lengthy flight which will be paid for by one of the organizations I am learning about which pays for families to attend medical appointments or conferences.

In reality I just hope that we make it there in one piece, that the fall weather will cooperate and that Brady will have a seizure free trip. I will gladly search the couch cushions for funds and juggle/wrestle Brady through each and every meeting. It will be worth it to meet all of the helpful online voices in person that make up our newfound 1p36 family.

p.s. check out our new "How Is Brady Today?" counter. We are currently over four days seizure free!


Matt Snow said...

Hey Troy and Kajsa,
How awesome that you guys have a blog, now we can keep up with how you guys are doing, since I'm so bad at keeping in touch. Brady's one cute kid and you guys are doing an awesome job. We're praying for you guys, especially for Brady.

As far as our New York trip goes, you'd think I'd have planned it better but as luck would have it, the Mets ARE playing the Giants that week...but in San Fran! The irony!

We want to go to Phoenix sometime soon, to visit Elisha's family down there, but probably not until the fall, when it cools down a little. It will be our first roadtrip, the four of us. We hope we can see you guys then.

Jane said...

I hope the trip is a mix of reality and the perfect world version. I would love to go and care for Brady while you guys do all that, does the organization want to fly me out too?!? You are both going to love the Boston game!

Sara said...

What a cute pic of Brady all dudded out for his team! :)

Have a great trip... even if it's not-as-perfect as the visionary version! Can't wait to see pics if you make it to a game! :)

onceapickle said...

I'm so excited for you guys! How great it will be to meet your friends in person, travel to Boston and also get to go to a conference with specific information just to help you and Brady. I hope it will all go smoothly and even if it isn't perfect, maybe the reality will be so great that's all that will matter.

I'm sure I can find some couch change to chip in! =)