Winter Challenges

Keeping Ayden Jane in the sweet spot so that she is can do well in school, keep her weight well managed and just be happy over all, (not to mention easy to live with) gets to be a real challenge in the winter months. We are nearing the end of January when she is typically the heaviest, most challenging, lowest tone....

The exercise piece seems to be so crazy important for Ayden Jane. I am not sure what the extended exercise does in some areas but I am sure that it positively effects blood sugar, ketone production and metabolism. It goes like this - when she gets the long walks, the good hard swim team practice, hours at the beach and pool, long sunny days on the trampoline with friends, regular running from training to run a race... you get the picture. When these happen, Ayden Jane is happy, not hungry, thinks quickly, sleeps soundly, learns fast and is just a joy to be around.

When this sort of exercise ceases to happen, her brain gets stuck. She gets a little more hungry. She argues more. She gets a bit anxious. She needs things repeated. It takes forever to do schoolwork. The pace of life slows even though the effort increases on her part. It is frustrating for ALL involved.

In some ways, I think it is good that during this time is when we are seeing Dr. Miller. It reminds me of all the concerns we still have for Ayden Jane. On AJ's part, she notices the difference in her brain running smoothly and not. She gets frustrated by it. She says things about how she does not like having to take her pills ect. EVERY DAY. I think she feels the very real and consistent, daily burden of dealing with a chronic medical issues.

I look forward to the day that she does not feel that burden so heavily.

2016 Recap / 2017 Preview

One thing I really enjoy about the blog is I can look back over the year we just completed as I look toward the year to come. 2016 had some fantastic accomplishes and some very hard times.

The hard times are marked by my Dad's passing, Gary having major wrist surgery and being out of work, Noah with a total of 3 surgeries before years end, Mckenna ending up in the hospital for a week and Kayla patiently/not so patiently trying to figure out the next phase in her life. We are thankful that most of these things have settled, and hearts and bodies are all the mend.

There have also been many good things. First plane rides, first trips to roller coasters, visiting Boston and Chicago and Indianapolis. Cheering for Noah in person, as a family, for his last home soccer game.

For Ayden Jane, the triumphs add up. Her first honor roll at the end of second grade. Reading taking off, Swim team going well, Traveling to Boston with Kayla, Trips to see PWS friends across the country. Climbing to the top of the rock wall. Standarized test percentile ranks climbing. Making good friendships. Hunger nearly disappearing. Learning to monitor and maintain her own weight. Eyes improving. Conquering the monkey bars.

Looking forward, I can barely see through to the end of January. Coming up this month we are remodeling our kitchen. Annual review time at work with 41 IEP's to write and meetings to hold. Gary going back to work (hopefully confirmed tomorrow). High School soccer back in action for Mckenna. Swim team and (hopefully) girls on the run for Ayden Jane by the end of the month. A trip to see Dr. Miller and to Shriners's for a scoliosis check. Such a busy month it will be!!

Hopefully the rest of the year won't be quite so incredibly busy. I am thankful to have jobs and active kids. I am so thankful to get a much needed kitchen update. I am thankful for caring doctors even if travel is required to get to them.

There is much to hope for on the PWS research/treatment front as well... Not going into that right now, but I am truly excited and believe that one day, the last pauses and challenges brought to AJ by PWS will be put behind her.

Wow, here is to the start of a new year and tackling it head on!!