Wednesday, January 30, 2013


Four simple letters F O O D.  They can strike fear into the hearts of those whose lives are touched with PWS.  At the very least, the way that we look at, think about and feel about food changes.  Honestly, some of the changes are good.  Like thinking about the nutritional value of the foods we buy and feed our family.  

The frustrating part, however, is to realize how much food is EVERYWHERE.  I do not look forward to the day that Ayden Jane feels truly hungry all day long.  She is not yet there, but just knowing that it is lurking makes me notice...

So where are we now with regards to food?  In an awesome place!!  Ayden Jane is 5.  Some kids start feeling hungry as early and 2 or 3 and I think I have read average is between 4 and 8.  (totally not sure of those numbers..)  I also know that there are some kids that hit their teens before it becomes a challenge.  That is a lot of years of 'waiting for the other shoe to drop'.  

So, for now here is a story that reminds me what a great place we are in.  We decided to make cookies to send to Kayla at Clemson.  Ayden Jane helped make the batter without even trying to take a taste.  Then a plate of cookies sat on the counter for 2 days and yet it was like they were invisible to AJ.  I know I did not do so well!  A reminder that we still have no need for locks on our pantry or refrigerator and that Ayden Jane can handle making good choices.  About the only thing she cannot resist is a banana.  We even went by the bakery and picked out special things for grandma's birthday and Ayden Jane simply asked if there was anything there she could eat.  I answered no, but you can have a banana at grandma's.  She rejoiced!

I wish things could stay this way, but I know they likely will not.  The hardest part is to remember to enjoy this time and not worry about 'some day' while at the same time, watching out and being prepared for it to come.

1 comment:

  1. What I've known about the sneaking food/deadly appetite depends about many things, among them how PWS is managed during childhood.
    But also on stress levels, on GH treatment etc etc...
    I wish I could be very helpful about this point but unfortunately, I have no crystal ball to help you :(
    And even if it's a rare case of figure, AJ may also not have the ravenous appetite. I could also know a family in my country whom the 10yo child does not have the ravenous appetite and she (the child) is 10yo.
    I know that it's not the most frequent situation, but only to say that it can and does happen.

    And even if AJ's PWS is not as typical as it can be described, so what ?
    She is still AJ and it does not make her PWS "less valuable" than a more typical child. I am not sure if it's English or not, and I don't intend to offend you.

    Many families need to lock the kitchen very early, some don't need even when the child is a teenager (I could read some blogs from UK where the family did not need to lock the kitchen, although it's not the most frequent situation).
    It really depends on many things, and to some extent how PWS has been managed during infancy.

    I also think that if and when AJ displays food struggles, you will manage it awesome.
    I am sure you can do it.