Pictures from Our Trip

1p36 Conference

We were very lucky to go to the 1p36 Conference this year in Cincinnati, Ohio.  We were at the first conference in 2007 and boy, things have changed!  There were 65 families this year!  Some of the research has also changed, so that was interesting.  One of the things I found most interesting is that Zoe's heart condition (LVNC) which is not as common as other heart problems has now been linked to 1p36.  We thought this all along but there was not research to support this.  Also interesting to hear the debate that the bigger deletion size means more delays and medical issues.  For a while they were saying size didn't matter, but they are starting to think the more genes you are missing, the more problems you are going to have.  Unfortunately Zoe has a very large deletion.  Knowing this info does not change anything but it is interesting.  Plus, we can appreciate just how amazing Zoe is doing for a person missing all those important genes!  Genes, shameenz, who needs those genes anyway?

We started our road trip off with an overnight at a cabin a few hours away from Cincinnati.  And what would camping be if we didn't roast marshmallows!

 It is always a good idea to give small children sharp sticks!  Ailsa enjoyed eating the marshmallows raw...

 ...Zoe thought cooked marshmallows were funny, but not so tasty.  Zoe does not usually enjoy sweet foods but we always let her try them if she wants.  Who knows, one day her sweet tooth might grow in.

Speaking of Teeth

Zoe lost her first tooth while we were away!!!!  When I went to brush her teeth I noticed the tooth was just gone.  No blood, no fuss, no tooth.  Just a cute little gap.  I can't believe my baby is so big now!  And we don't even have a little tooth to keep as a memento.  We are guessing Zoe swallowed it and we weren't going to go looking for it.

Next Stop- St. Louis, Missouri

After the conference we drove to St. Louis to visit our families.  Unfortunately by the time we arrived there, Zoe was showing signs of a bladder infection and very uncomfortable.  So we went St Louis Children's Hospital and started antibiotics.  A few days later, Zoe still had fever and lots of pain so we took Zoe back to the hospital and she was admitted for a few days.  But first...

 In between hospital visits we squeezed in a trip to the St Louis zoo where the girls got to ride the zoo train they have been talking about for weeks.  As you can see- both girls enjoyed the ride.

 Zoe walking in her upsee at the zoo.

Hospital Visit

The Children's hospital has an outdoor garden on the roof.  It was beautiful.  We could only stay outside for short periods of time because St Louis is HOT!

 Zoe really liked the swing in the garden.

 Mommy and Ailsa spent some special time together in the garden while Zoe was with daddy.  Ailsa is such an amazing sister and so mature for her age.  We have to remember though, she is only 3 and needs lots of special attention too!

What Do They Put in Their Food?

From a very young age, Zoe has loved going to Denny's restaurants.  She even showed us she knew how to spell Denny's when we were on a car trip and when I spelled Denny's, Zoe immediately laughed and signed eat.  We are beginning to suspect they put something in that food because Ailsa is now a Denny's junky too!  Every time we stopped for food, Ailsa would say, "Can we eat at Denny's?"

Ailsa showing off her dinosaur chicken nuggets at Denny's on the way home.

You're Not Gonna Stop Me From Having Fun

There is an Ani Defranco song called "Gravel" that has the lines:

"and maybe you can keep me from ever being happy,

but you're not gonna stop me from having fun."

There are so many things in Zoe's life that could make her unhappy.  Unfortunately this latest problem does not seem to be a simple bladder infection.  Zoe continued to have lots of pain when we returned home.  She is now admitted to our hospital.  No matter how much pain Zoe is in or how unhappy her circumstances, Zoe always manages to have fun.  She is a constant reminder of what it means to live in the moment and appreciate all that the moment has to offer even during times of suffering.  So here is a picture of Zoe still having fun while in hospital: