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.

Monday, October 23, 2017

Pitolisant 22.5

I still like the new dose. I don't see negatives. I have noticed some itchiness. She has been mischevious. She has been content. She is doing great socially. That tiny increase in processing speed and energy seem to have her rolling right along.

Here is our weekend in a nut shell. Friday night was a swim meet where she earned her very first blue ribbon. Saturday morning she had a soccer game and played really well. (relatively speaking) A couple parents commented on the improvement in her.

During the afternoon we rode down and met family including twin boys with PWS. Ayden Jane was super excited and, as typical, was pretty quiet when she actually met them.

Saturday evening it was off to Mckenna's soccer game. It was at a field with a playground with woods behind. Ayden Jane played from 4:30 until at least 6:30 and never even came over to talk to me. Actually, I lost her for a little while. She was on the playground with several other children... and then she wasn't. Eventually she popped out from the edge of the woods. Apparently, they built a butterfly hospital and were having a wonderful time. She was entirely fithy and entirely happy.

Sunday came church and the Fall Y'all festival with lots to games and fun. We threw in an hour long dog walk between the two. All makes for a perfect weekend for Ayden Jane.

Today was strange though. Ayden Jane had a slow start and when she got to school, ended up throwing up. Yep. First time in 10 years! She did not seem any worse for the wear. I talked to her on the phone and she seemed fine. I came to pick her up - I mean, she threw up so I figured I should. She was out on the playground at the time and the moment I saw her I knew she was fine. She came home and read and worked on some online math. I took her to swimming and we went on with our day.

Never a dull moment.

Saturday, October 14, 2017

Small Bump, Big Jump

After talking with Dr. Miller, we decided to increase Ayden Jane's dose of Pitolisant by another 4.5 mg. This takes her from the dose of 18 she was on to 22.5. 

Why? you ask? Some of the sleepiness creeping in after school. A bit of over emotional, overtired stuff. Notes from her teacher that her processing speed is noticably slower later in the day. And Ayden Jane asking for it. She gave a fair account. She just told me that she can do all she wants but doesn't want to feel tired and have to work so hard. She was really sweet honestly, telling me to check with Dr. Miller and if she couldn't it was okay. She would manage.

Dosing is a bit of a challege because Pitolisant is new. She is young. We want to ere on the side of caution if there is any chance of error. It is EXPENSIVE. Dr Miller decided with us there was no issue going up another bump and that we will hold there for a while - like until we see her in January.

I'm not sure what I expected. I do know I did not expect the bump to make a huge difference, sort of just give her a boost to get through the day with more even energy. What it did do for her was so much fun! She is loud and silly and happy after school. She NEVER stops talking. There is little aruing and much laugther. 

She PLAYED soccer in her game today. I mean, she kicked the ball. Got in the mix. Ran up and down the field. No stand and stare. No getting tired. 

Needless to say I love it.

Sunday, October 8, 2017

First of Many to Catch Up

I am so behind, which is a result of an out of control schedule! For my part, I am not keeping up with life well. My last post was a couple of weeks ago and the days have marched on by.

A couple weeks ago we had soccer in Columbia Sunday, then went to Greenville Thursday and Friday to see Shriner's for a scoliosis check and, of course, to visit Ellie. First up, the scoliosis check went well. I hoped for a reduction in the curve, but no such luck. They said that the curve has remained stable and seemed very pleased with that. I'm not super thrilled that she has even the 13 degree curve but if they docs are not worried I guess I shouldn't be concerned about it. For now we just continue to watch it. Back for another check in 6 months.

Hanging with Ellie was great. Her school was so kind to put on a carnival for us to enjoy together. Honestly, Ayden Jane really enjoyed seeing Ellie's school and doing all the rides and games with her. So fun to watch their friendship

We more or less recovered from all that fun and we were back on the road to Columbia for a soccer tournament for Mckenna. Mckenna played 4 games in under 30 hours... she was exhausted. Ayden Jane ran with the pack of younger siblings, enjoyed time at the hotel pool with a friend and just generally kept occupied and happy. We were all EXHAUSTED after the weekend but, of course, had to jump right back into the swing Monday morning.

It all caught up on AJ during the week and she had a rough one. I think the travel and eating out caused her gut to mess up which always seems to cause her behavior to mess up. Anyway, by the end of the week she seemed pretty good.

So that catches everything up until yesterday. We had Ayden Jane's game at 9 (which was less than her best performance) and then just stayed HOME for the rest of the day. It was wonderful. Then today it was back on the soccer road for the day. The games are fun and AJ does great but this momma is tired.

Wednesday, September 20, 2017

Our New Life

Ayden Jane continues to do well and love grade 4. I am missing her. Missing getting in her classroom or visiting her at lunch and putting faces to the names I hear. I feel sort of disconnected. I remind myself how amazing it is I can be disconnected and Ayden Jane still doing fantastic.

I mean, we still have no working kitchen so I have not been able to provide meals ect that would be best. I have no part in picking her up or after school snacks. I don't even see her in the morning. It's all sort of strange. For the past 10 years she has been so dependent on me. It is good, but strange. She is functioning without me and, although there will be some improvements coming in the food category, she is doing fine.

Additionally, I had a WOW moment last weekend. We went to Mckenna's soccer game in Columbia. It was HOT. I was hot, and I am always the last one to be hot. In years past, I would likely not have even attempted to attend the game because I would have known Ayden Jane could not handle the heat. This summer, I just didn't notice heat being a problem for AJ. I didn't think that much of it and I had taken for granted how much better she handles the heat. Sunday really confirmed it for me though, we were out there for nearly 2.5 hours with zero shade and she was totally fine. Thanks Pitolisant.

Tomorrow, off to Shriner's! Yikes!