Tag Archives: feeding challenges

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

Posted in Postcards from Holland, PWS, Scrapbook | Tagged | 2 Comments

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

Posted in Postcards from Holland, Running | Tagged | 2 Comments

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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Should have seen it coming…

Remember this picture? from this post, way back when? Well, since then, Hope has gained — oh, I don’t know, about 3 pounds. Guess how many I’ve gained? Enough to lead to this…. For the record, the “Giant Book of … Continue reading

Posted in In the Kitchen | Tagged | Leave a comment

The Art of Compromise

We’re back on the bottle.  The baby bottle that is. And by “we,” I mean Hope. Why the bottle?  First, she’s willing to take the bottle again — where for awhile she wasn’t; and second, she sucks more efficiently from … Continue reading

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Welcome to Bizarro World

So, Hope had her checkup with the endocrinologist today.  She has not gained any weight since her last visit.  She grew an an inch, but no weight gain.  On top of that, at her last endo visit, she had only … Continue reading

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Relief

The last couple of days have been all about Prader-Willi around here and I’m glad to say that they are over.  Last night we had our very first Prader-Willi Symposium, organized by our local support group.  The pediatric geneticist that … Continue reading

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