I didn't mean to leave the "sick Claire" story hanging all weekend...but since she was feeling better the next morning, we decided to go to New York!!
Well, it wasn't quite that simple. We've had this NY trip planned for a few months now, but when she was so miserable the day before, we were seriously considering canceling the trip. Luckily, whatever "it" was only lasted a day and she woke up the next morning just as bright and cheery as ever. So we hurried and packed and spent the weekend in the Big Apple.
Not just for fun, of course. The 9th International Primary Hyperoxaluria (PH) Workshop was held in NY this past weekend and we decided to make the effort to be there. And it was definitely worth our time, effort, energy, and money. We heard from experts around the world who specialize in this disease. We learned more about the science behind this disease, clinical management of it, and possible future treatments and developments (other than transplant). We also learned a lot about the diet and nutrition guidelines that Benson should be following. It was very enlightening and informational. It also provided an opportunity for us to meet (face to face) with other families who are facing the same challenges we are. Although no two families' stories were exactly alike, it was fun to learn from one another and connect with people who can better understand what life is like in PH family! It was truly a great experience and we are so glad we were ALL able to attend...thanks to Claire's rapid recovery!! My mom and step-dad also came and helped out with the kids during parts of the workshop so Jared and I could actually listen and and pay attention. During each break we ran upstairs to our room to feed Claire and give her medicine and they did a great job of entertaining them while we went down for the next session. At the end, we brought everyone down for a 'cocktail reception' and it was fun to have Benson and Claire meet some of the other families who were also there.
We did make some time to enjoy a bit of NY while we were there too. We did a hop-on-hop-off bus tour of the city (the kids LOVED riding at the top of the big tall bus), took a ferry ride to the Statue of Liberty, enjoyed an afternoon in Central Park, and Jared and I even got to go see Wicked on Broadway! It was a wonderful, safe, healthy trip...just like we like them!
Pictures to come.
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2 comments:
I am SOOOOO glad you got to make the trip. What a great experience. I am a bit jealous you got to see Wicked. I bet it was amazing. Gotta squeeze in the fun trips. That is what makes all the other mundane weeks bearable!! :)
It was great to meet you, even though it was brief. I am sorry we couldn't stick around and meet the kids. After that long day my boys were antsy to get out of there.
Jamie Schmitt
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