Tag Archives: feeding challenges

My Story, pt. 3 — the one with Mr. T

Posted on July 14, 2010 by Jen

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

Posted on June 8, 2010 by Jen

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

Posted on June 5, 2010 by Jen

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.

Posted in Postcards from Holland, PWS, Running | Tagged , , | Leave a comment

Should have seen it coming…

Posted on January 6, 2010 by Jen

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

Posted on July 14, 2009 by Jen

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 →

Posted in PWS | Tagged | 2 Comments

Welcome to Bizarro World

Posted on July 13, 2009 by Jen

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 →

Posted in PWS | Tagged , , | 8 Comments

Relief

Posted on May 19, 2009 by Jen

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 →

Posted in PWS | Tagged , , | 2 Comments

Still running…

Posted on May 13, 2009 by Jen

I took a survey today that asked me if I felt better prepared to deal with the issues that my special needs child would face in the future. Um….no. How in the world am I supposed to prepare for that … Continue reading →

Posted in Postcards from Holland, PWS | Tagged , , | 3 Comments

Who’s better, who’s…

Posted on February 25, 2009 by Jen

First off, Hope is doing much better. Today she ate an enormous breakfast of applesauce, bananas, cereal, and (of course) butter. She still has a bit of the neon green stuff in her nose but she’s nowhere as congested as … Continue reading →

Posted in Postcards from Holland | Tagged | 1 Comment

Just a little update

Posted on February 23, 2009 by Jen

I haven’t really felt like writing much lately, I probably should anyway…especially because I don’t feel like it.  Hope has the bug, but so far she seems to be holding her own.  She’s stuffy but coughing, and I’ve moved her … Continue reading →

Posted in Postcards from Holland | Tagged , , | 1 Comment