Category Archives: Postcards from Holland

Quarterly Update

I have basically given up on the whole blogging thing, but just in case there is somebody who still wonders what is going in on with Hope, I figured I’d add this little update. Hope turns 3 on Friday.  We’ve … Continue reading

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Putting in on the line…

Okay, all joking aside — here is the real deal…. Why am I running in this marathon? Mama needs a win. That probably doesn’t make a lot of sense to you, but it means everything to me. The last two-and-a-half … Continue reading

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One day

I think about Prader-Willi Syndrome every second of every minute of every single day.  It never goes away.  It’s like when you get an annoying ringing in your ears, except it lasts the rest of your life.  Maybe that’s why … Continue reading

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My Story, pt. 3 — the one with Mr. T

and now, the shocking conclusion!…. But things weren’t all normal.  Hope never cried.  One of the quirks of Prader Willi.  When she finally had the traditional “1st Birthday Party Meltdown” it was the first time that most of the family … Continue reading

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Good Day

First off, what a relief — Hope gained .87 ounces per day since we last saw the nutritionist about three months ago.  Her goal “range” was .4-.9 ounces per day.  She only weighs about 21 1/2 pounds but she’s “back … Continue reading

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The Long Run

Long runs are hard.  You just kind of have to keep plodding along, trusting that if you just keep moving forward, you’ll end up at that place where it will all be worth it.

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Hello again…again

Well hello there, big vast chasm of the internets.  It’s been a while.  You look well.  Congratulations for getting Betty White on SNL.  Have you lost weight? I feel a little guilty for not updating the blog more than…well…quarterly.  I’m … Continue reading

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