Monday, March 21, 2016

Sweet Spot

Ayden Jane is just on such a roll lately. If you are reading this and you have a child with PWS or another developmental disorder you likely know what I mean when I say she is just in the sweet spot right now. If you don't, I'll do my best to describe what I mean.

With Ayden Jane there is a delicate balance where if I can get her food ratios just right, her food amounts just right, the right amount of exercise, the right amount of sensory input, the right amount of supplements, the right amount of rest.... She can fly through days without a care in the world.

Right now is one of those times. I tweaked her supplements a bit and I think the time change has also helped for some unknown reason. The result, she has been so active with a steady stream of energy and not worrying about food. We have had meals as far off from her general typical meal time as 2 hours and not even batted an eye. She has turned down snack twice and chosen to put off meals until later... then not even bothered. Her brain is sharp. Only negative at this point is I am exhausted at the end of her day.

She had a wonderful day yesterday at a friends birthday party. It was a big, crowded, fun place with lots of things to touch and do. She played laser tag, climbed on the ropes course, flipped upside down on a crazy bike and generally had a blast for 4 hours. After we came home she had a coconut square and hit the neighborhood. I had to run a few errands and did not get back until after 7. She had just come in and started supper. Then she wanted to walk the dogs!!! Yep, a mile and a half later and 1,000,000 words later we were back and she got ready for bed. Whew.

If I could write up a formula for exactly the amounts of each of theses things she needs to make her stay this way I would but that is part of why this kid is challenging. Her needs change as she grows. The needs change and you can't quite put your finger on it. At first it just seems like she's tired, or allergies are bothering her, or it was just a long week or.... Eventually, you decide it is not temporary and then have to figure out what is the cause and how to address it. I'm not saying the difference between functioning and not functioning. I mean the difference between doing good and doing great. It is subtle and I tend to obsess and drive myself crazy. Sometimes I am nuts and I need to leave well enough alone. Other times, like this one, my suspicions are totally spot on and we almost get a break from PWS. I allow myself to relax for a while and Ayden Jane enjoys a stretch where things come easier.

Long live the sweet spot.

Thursday, March 17, 2016

Eye Check-up

Yesterday we headed down to Storm Eye Clinic for our 6 month check on Ayden Jane's eyes. There was good news, but not exactly the news Ayden Jane was hoping for.

The good news is that the doctor was very pleased with improvements. Ayden Jane's right eye has some strabismus and turns in toward her nose at times. We have noticed this happening much less when she does not have her glasses on and he confirmed that she is maintaining good straight eyes when not doing up close work. Another improvement was in her depth perception. She has some now!

So, all this and some other things I didn't totally grasp, result in her being able to play with her glasses off more often when she is not using her up close vision. Wonderful news as we head into the summer beach and pool season. Also, just nice to know that it really is okay for her to run with the neighborhood pack, jump on the trampoline and play soccer without her glasses. It's a wonderful thing because her glasses have been left at home during these sort of things a lot lately and I was wondering...

Ayden Jane was hoping that she would get a reduction in the lens prescription. Didn't happen. I'm not sure if it is even in the realm of possibility at this point, but Ayden Jane thinks she can make it happen.

To me, it shows more than just what her eyes are doing. I remember back when she was tiny and all through early intervention. I sort of had the feeling like there was a window of opportunity for her neurological system to fully develop and that if we did not 'catch up' during that time, then it was too late. Spurts like these show me that although as a child ages there is a slowing of some of that sort of growth, it is not an abrupt stop. Ayden Jane's eyes made a significant jump at age 8. That is much older than I expected to continue seeing these sorts of developmental spurts. It seemed to come in conjunction with her improved handwriting and some other minor things. Hooray for neuron growing!

Monday, March 14, 2016


Well, it's nearly two weeks into March already! It must be soccer season. Nothing else makes time fly quite like this time of the year.

Ayden Jane is handling both swim team and soccer right now. It feels over booked, but a big break is coming, so we should be good.

Watching Ayden Jane at both swim team and soccer is such an experience in mixed emotions. On one hand, she struggles....  On the other hand, at times she surprises me with how well she does something. So one minute I am stressed out by her seeming to not even realize a soccer game is going on, then the next minute I am so proud of a great run down the field or a time she stepped up and took the ball.

I guess the worry I have for her in the sports arena is more about me than it is about Ayden Jane. I mean, I was athletic, and the thought of not being able to be good enough to truly feel like a part of a team just seems like a terrible thing. In the grand scheme of life I do realize that it's not really that important. and I'm sure there are lots of other ways to be happy. It's just that this is the avenue I know best.

As I watched Ayden Jane this week in her activities I think what struck me more than anything is her heart. That may sound strange. We use the term, "she has heart" to mean somebody works hard and gives their all. We use the term, "she has a big heart" to mean someone cares openly for others and is generous. Sometimes, people use the term, "she has a good heart" to mean that someone is kind and sees the best in others.

I think all of these 'hearts' apply to Ayden Jane. I watch her work ethic and I know that she truly does play, learn, exercise ... live, with heart. She gives everything her best effort. I know that she has a big heart toward her friends and wants to help them and is generous with whatever she has to give or share. I see genuine kindness as she complements her friends on their skills or encourages them as they are learning something new. There is no envy in her over things coming easier or the foods others can eat or just the fact that they have all their DNA and very few doctors appointments.

We talk often of her friends with PWS and the struggles they face. Ayden Jane cares deeply for these kids. Like she feels a special connection to them. Her biggest hope is that they will be able to enjoy life just like she has. She genuinely feels like she has it wonderful because she is able to do all the things regular kids her age do and she knows that lots of kids with PWS just can't keep up.

So, our kid with the rare genetic disorder has a confidence about her that is uncanny. She truly feels blessed by all the things she can do and the thought does not really cross her mind to complain about all the extra work she has to put in just to keep up. Yep, she can teach us all a thing or two.