I Don't Know When It Changed

This past weekend Ayden Jane and I had the pleasure of heading to Indianapolis for a One Small Step walk hosted by some of our favorite people. Hurricane Florence was blowing into town at a snails pace. Well, honestly, I think a sloth would have beaten the storm in a head to head race. I felt we were safe to stay through the storm but as the approach dragged on and the days of rain and possible power outage lie ahead the big kids voted us off the island. They were unconcerned about the impending hurricane but they had no desire to be locked inside for days on end with our own little tornado of energy.

So Ayden Jane and I made a last minute decision to pack up and head out. Ayden Jane is an easy travel companion and was even willing to read aloud to me to help pass the time.  It was like my own little audio book.

We stayed with wonderful friends who open their home (and giant basement) to us any time we are in town or in need of a stop. Ayden Jane had a wonderful time with their sweet kids. She was thrilled for the attention of H, a teenager who has not lost her ability to be playful. She enjoyed hours of fun playing with B, a sweet, energetic boy a few years younger. And, of course, loved seeing E, a younger version of Ayden Jane.

The biggest purpose of the trip was the walk on Saturday. There were several families with children who have PWS, some I already knew, some I had not. After the day and the conversations and the talk of independent futures "one day" .... I got to thinking.

I don't know when it changed, but my mindset has changed from:

IF Ayden Jane will graduate from HS with a diploma to WHEN she will.
IF Ayden Jane will go to college to WHERE she will go to college
IF Ayden Jane will be able to have a job she loves to WHAT job she will choose.
IF Ayden Jane will live independently to what do I need to teach her to make all of these things come true.

This entire post likely sounds crazy to 99 percent of people. If you have a child with PWS then you likely can't imagine them having such a typical life, learning to be fully independent and manage job, food, money, medical things .... If you don't have a child with PWS, and you know Ayden Jane, then you probably think I'm crazy to have once worried so much about her future.

Somewhere along the way, my thinking just changed. We were told a lot of things when she was diagnosed and one of those was she would never live independently. That she would need to live with us or in a group home. It weighed heavy on us but now, I don't really worry about the future or what it will look like for AJ. I mean, we think about what options will be good for her. We know that she may take the round about route and need extra instruction or help from time to time, but I have no doubt she will find her way. 

Intro to Grains

Since Ayden Jane was 8 months old we have been "grain free". Basically, grains in the form of infant cereals proved to cause improper body composition, in ability to grow, and mute her personality so we threw them out. There were a few select exceptions like occasional quinoa and flax meal.

It was likely a drastic response as the parent but they felt like desperate times (and they kinda were). I needed to make a big change and, although it may sound like it was a hard thing to suddenly remove all crackers,, bread, cereal, pasta along with the obvious cake and cookies, it was a simple straight forward rule. It forced me to get creative and come up with other things to feed a nearing one year old. The improvements were undeniable and I never wanted to go back.

I know it likely sounds strange but even the thought of Ayden Jane eating grains panicked me a little. I looked at food so differently and even went grain free myself for a time.

Now, Ayden Jane is nearing eleven - years that is. After discussions with Dr. Miller and the need for slow burning complex carbs to be available for growth rather than relying so heavily on protein she wants me to try introducing a very small amount of complex carbs into Ayden Jane's diet on a regular basis.

Ayden Jane has occasionally had beans like in chili, but certainly not regularly. Oats are a choice Dr. Miller would like us to try since being a girl with PWS by UPD, cholesterol levels run a bit high. She told me this back in January but I knew I needed to get Ayden Jane to a "better place" before messing with something new. Quite honestly, after she was doing so much better and I was home for the summer and could really watch, I forgot completely about it.

So.... This past Tuesday I worked up the courage to give her something we swore off 10 years ago. I gave her the full fat plain greek yogurt with frozen blueberries she loves AND added 1 Tbs raw steel cut oats and 1 Tbs healthy granola (oats, nuts and seeds). I gave it to her after school and she crashed early that night - 7:00. Then woke up with a belly ache around 3:15 and was up for hours.

She finally fell back asleep about 5:30 and I did not wake her for school. She did wake on her own at 7:15 though and was chipper and ready for the day. It was almost crazy! She went all day long with no problem and had a great day.

So.... where do I go from here? Experiment will continue on the weekend and I will give them to her at breakfast. (that's the goal anyway since I need to find something other than eggs for breakfast). We will see how it goes.

It is crazy how sensitive she can be to tiny changes in diet, supplements or medication. I am so very thankful, however, that I am home and able to work through the nuances that are Ayden Jane.