games for Glori

Calories, Cocoa, and Gloriana

10/23/2014

 
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Every day has challenges on its own, and different ones with a daughter who has Prader-Willi Syndrome. We do our best to count calories, keep the kitchen locked up It is hard. That is all I can say. It is hard. 

Gloriana is about 3 and 1/2 years old now.  Despite our efforts, we are not perfect. Glori has gained a little too much weight, so our doctor said to cut back the calories more. I never really paid attention to calories before. I never really had to. I think I have weighed the same for a decade.  

At meal time, Glori is the most grateful and thankful person I have ever met. It is like she hasn't eaten in days. She is such a sweetheart. People with PWS are hungry all the time. They never feel full. We have to stop Gloriana from continuing to eat or she starts to eat off other people's plates. It is sad to me. Immediately after we are done with a meal, she will ask for more.  


Gloriana loves juice and hot cocoa. We started making cocoa with watered down almond milk to cut calories.  We found a juice with stevia that cuts down her calories. We water it down as well. TIP: Stevia holds flavor better than other juices when watered down.  

When you are out with your cute little kids, people offer you all sorts of sweets. I have to decline because it would not be good for her. We have to cut back the bad calories now or she will pay for it later.  Healthy snacks are the way to go. She loves grapes, bananas, strawberries. 

I say all this to raise awareness about the struggles a person with Prader-Willi syndrome, goes through each day. The ones who love them struggle as well. It is love that keeps us making the hard decisions. Love is more than warm and fuzzy.
1 Comment
jeremy phillips
10/23/2014 07:25:07 am

That was a really interesting article. I had never heard of this before you guys started to raise awarness for it. Glori is such a sweet little girl. It takes amazing people to deal with these things. Hopefully you are able to make others aware of this syndrom.

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    This is Gloriana's dad and someday Gloriana herself. 

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gfG is not affiliated with the Foundation for Prader-Willi Research. I am just a dad that is trying to raise awareness.

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