Sunday, November 26, 2017


I read the book Wonder with a class I was teaching last year. I really liked it and thought it was a good book to read with Ayden Jane this summer as she was changing schools and some of the social chords might ring true. Her class is also reading it currently so it has all worked out nicely!

The movie came out last weekend and I promised to take Ayden Jane. Gary read a few chapters with her through the summer and loves movies so he wanted us to go when he could come. Mckenna has not had a chance to read it yet, but it is on her list. She was excited to come along with us so we make it a Thanksgiving Day family movie time.

So we sat there together. Ayden Jane super excited and wanting to talk through the movie... as usual. Mckenna with a vague idea of what it was about. Gary expecting a sweet feel good movie that champions kids who overcome challenges. Me, wondering how the book will play out on the big screen.

I'll start with Gary. Yep, he is the family crier as it comes to movies and he didn't let us down. Ayden Jane loved it but Daisy dying really hit her hard. I think she also totally grasped the "Via" piece. She has been talking about how much Mckenna loved herr and helped her and played with her and was her best friend when she was little. I think she has morphed all that Kayla, Noah and Mckenna meant to her and, for know, has it all placed on Mckenna. All in a good way. It is super sweet. Seeing the charatcter and hearing her talk about what it was like to be Auggie's big sister is such an honest, yet positive way was so great for her. She just 'got it'.

The Via part hit Mckenna HARD. She said after how accurate the character was. The way they showed how Via loved Auggie and totally understood he needed so much. Wanted only the best for him, but also felt as though she couldn't need anything... "Scary how accurate" were her words.

As for me? Well, I was prepared, having read the book 3 times now. The parts that were so true were Auggie's mom - putting her life on hold - but that not really being a bad thing. Just a truth. I agree. Via's part ... played out in Mckenna's life. Not sure about Noah and Kayla. And the Dad being the glue in a way. Supporting everyone. Also, his crazy attachement to the dog. It's going to rough when our Sadie dies. OH!! And Mckenna and I had to laugh at the part when Auggie brings Jack Will home and sort of announces him as his friend. The look of shock/excitement and wanting to cheer but holding your breath at the same time. We totally get that!

All in all, it's a great representation of the type of things that go on in a family that has a child with a big medical condition. Everyone plays their part. 

Saturday, November 25, 2017

Kitchen and Running

Whew. We are in the home stretch of our kitchen remodel. What exactly dose that mean? It means 3 months after demolishion, I have counters, a sink ... a fully functioning kitchen. Still needs paint. Still needs some carpentry completed. Still needs to be painted. Stil needs a few odds and ends and I still need to unpack some boxes and find things but I can finally cook again.

For Ayden Jane's part, she has done amazingly well. It is common for kids with PWS to get very nervous when routines are messed with, particularly those that involve food. For the most part, she has just rolled with it. It got so bad at the end, I hadn't made many of her typical standbys to have on hand and she was still rolling with it.

I will say, the large amount of eating out has not been the best for her weight and health, but things have not gotten out of control so I consider that a victory! I am looking forward to getting her back to good quality food and lots of vegetables. We shall see if I succeed.

Ayden Jane wants to start running again during December and January. Swim team is done this week and soccer is over for the fall. She is thinks it will be easier on Pitolisant and she remembers how much it helped her when she was running before. For my part, I told her I would run this crazy run with her . It is in March so she has 3 months to 'train' for the 5k.

Her plan is to do the running plan we found once before that will get her up to about 2 miles by the time we see Dr Miller at the end of January. Then switch over to a 5k training program that will get her to 3 miles. Wish me luck because we all know who will be running along side of her...

Sunday, November 5, 2017

Over Due Update

Time is flying by. Ayden Jane is doing well She seems to have really hit a groove this past week.

She brought home testing results from last spring's standardized testing. She has met grade level expectations across the board. Language, reading and math. She also had lexile score which placed her in the 73rd percentile and a math quantile which placed her in the 89th percentile. Yep. That pretty much blew me away. I think her 3rd grade teacher gets TONS of credit.

We managed to get through Halloween this past week. Ayden Jane loves Halloween. She dresses up and trick or treats with reckless abandon. She is convinced that the more candy she piles up for the Great Pumpkin, the better/more toys she will get in trade! The excitement that builds can get a little out of control. I blame it on being a holiday that doesn't start until late in the evening... That is just cruel. Having to wait all day long!

Just to up the excitement of life a little, we finally made good on our birthday promise to Ayden Jane. All she wanted to do was the ropes course. We took her friend G and off we went. It was a challenging course and after 2 hours, one potty stop which, of course meant we had to start over, and a lot of panic, we completed the entire level 1 course. It was so much fun and Ayden Jane did great! She is ready to go conquer level 2 next time. I hope I am up for the challenge!

My favorite quote of the day. As the girls were playing on some bars wating for our turn, Ayden Jane says: G, how do you do that so easy. Oh, I bet you have all your chromosomes. I'm glad I'm strong so Prader Willi Syndrome can't stop me! The positive attitude and determination are amazing. No whining, no 'not fair'. Just a truly thankful heart that she is strong and can do anything.

Mostly, life is summed up as a bit complicated, but totally doable. Ayden Jane still has no ability to be rushed. She still loves to thourghly discuss a topic before doing what needs to be done. She still can get a little stuck the moment you need her to process smoothly and quickly. Honestly though, I think we are getting to the point where some of these things are less PWS related and more quirky Ayden Jane things.