Saturday, February 6, 2016

Tough Lessons

The week I was out of town everybody learned something. I was gone for 6 days and when I returned, Ayden Jane had gained 5 pounds. Yep, 5 pounds in 6 days.... uggh.

So how did it happen? Did Ayden Jane sit around and eat junk for a week? Nope. It was the perfect example how easy it is for people with Prader Willi Syndrome to gain weight. Ayden Jane ate her typical breakfast and her packed lunch for school every day was not really any change. After school snack was bigger and supper included a fair amount of eating out. So all in all there was definitely an increase in "energy in" as I refer to it with Ayden Jane. 

Secondly, I could tell by her fitbit stats that there was a pretty big decrease in her "energy out". Typically, she averages her 10,000 steps and then some. The week I was gone she averaged more like 6,000 steps. 

Of course, my first reaction to it all was wanting to scream. Scream at PWS, at Gary, at Ayden Jane and at the feeling I can never leave her without her world falling apart. It was rude return from a week of zero stress.

I said I wanted to scream, but I didn't. I took a deep breath and watched as Ayden Jane was heart broken. She was upset enough for all of us. Quotes such as, "what if it just keeps climbing?" and "Are you disappointed I didn't do a good job?" and "What will I have to do to fix it?" Lots of oh, no's and tears....

So hard to watch an 8 year old who bares such a burden. It was one of those times when I am reminded that Ayden Jane does feel the burden of PWS. She handles it all so smoothly most of the time, blending in as just another 8 year old but ... she's not. I'm sure it is similar to a child with any chronic medical issue - often my mind goes to diabetes. The parallel being that there is just no 'time off' from the syndrome. It is work, every day. Each day needs exercise, each day needs good food choices and while an occasional large meal can be absorbed, too many of those in a short time is just not an option.

As usual, we gathered ourselves and made a plan. I took the opportunity to teach Ayden Jane (again) about the energy balance of 'energy in' versus 'energy out'. We decided that we would add in a good walk every day and cut back just a tiny bit here and there and see how things were going in a couple days. 

Today is six days later and I am happy to say she is back down 2 pounds. Hooray!!! She was so happy when she hopped on to check her 'number' this morning. She informed me that the walking has helped so much and that we should keep going until her number is back where it should be. Too cute and definitely a lesson learned.

As for Gary? Well, everyone needs the wake up call that the stakes are high. He, of course, felt awful and has an entire new, deeper understanding of just how delicate the balance is. I have no concerns about going out of town again because I know he would do things differently.

1 comment:

  1. Hi Janet, your post touched me. My oldest (of four) has Type 1 Diabetes and Celiac Disease, so I can relate to so, so much of this. I just want to say how much I admire you for being so diligent, for having a great attitude, and for helping your little girl to have a good outlook even when things go haywire for a bit. I know that it's hard not to personally fall apart right along with everything else that's not going well! I will be praying for your family!