Scroll back one post for my frustration at Elise's exhaustion and the lack of response on the part of her medical professionals.
After three years, we stumbled onto at least part of the answer.
As a child with Down Syndrome, vision screening is an annual process, with specialists (as it is with everything). So we go usually in February. I was too tired to go then this year, so I got her in at the end of March. She was tested and they decided that her vision was off enough to warrant glasses. But not near sighted, as genetics would have caused us to suspect, but far sighted. They arrived at the first of April. She chose them. Bright, neon pink. I was floored, but decided that if pink would make them fun enough that she would choose to wear them, then I didn't care and she could have them. They are called Rainbow Cookie by Dilli Dalli. They are squashy and flexible and have a headband on the back to keep them snuggled up on her face. She LOVES them. They have a home on her bedside table that they are placed on super carefully when she goes to bed and they are on her face as soon as she gets up.
They most important part of the story is that she is not straining to see constantly and doesn't get as physically tired. She can see, and is finding better success when she is writing and drawing and coloring. This is keeping her on task longer, is lessening her frustration, and is improving her work. She is not over tired every single day, and is sleeping more deeply and is waking more refreshed.
Being better refreshed, she is more willing to do physical things. Which segways nicely to my other new good news. I bought a tandem kayak for Mother's Day. My parents are very gracious to watch my kids so I can play on the lake, but this summer, they decided to tour the Northwestern United States and visit family. Consequently, if I wanted to paddle, I needed to find a family option. Amelia is a competent paddler. Charlotte might be. But Elise is not. However, I did discover on our family vacation, Spring Break 2016, that Elise very much liked a kayak and was willing to attempt to paddle. Furthermore, that if she tired, I could manage the whole 13.5 feet of it myself, with no problem.
So, I got one that I could put Elise and Charlotte on and I put Amelia on Ethan's kayak. It has gone over brilliantly well, and we have gone out several times. Everyone thinks it is grand fun. Interestingly, I put it on their older brother, Gabriel's truck. And as he is in the Army now, seeing his truck in our driveway every day was rough on them. Now they see it as a kayak transport, and they don't cry when they see it, which was an unexpected bonus.
When Amelia and Charlotte were in VBS, we took out Willow on it. As a consequence, she now has a real life jacket.
This may not appear to be a huge deal, but when you life stretches out with a daughter that will likely remain at home, that she will be able to participate in an activity that you love, it looks more fun and less wearying.
She also likes to hike. I mean, she would rather die than walk on a sidewalk or road, but in the woods, she is more than willing to push a little. Also, very hopeful. I haven't sorted a way to keep her from getting painfully hot...but I am going to probably look at a camelback and see if hydration will help.
But have I mentioned that I feel like I am getting my hoped for life back?? I am. I can live without family biking trips if I can find other "family fun options" that don't exclusively consist of movies and restaurants.
Hope is a little word, for a big thing.