Wednesday, June 28, 2017

Fun Times


                 

Today Ayden Jane and I went to a fun place with 2 of her friends. She had a blast and worked hard!
Just imagine a giant a bunch of bouncy things, now get them all wet and slippery. Next, make them wobble a bit as lots of other people are on ones all around. 

Yes that is Ayden Jane jumping off the top


Now add some slippery things to climb, a few ropes and "rock" walls that lead to tall jumps. 










Friday, June 23, 2017

Repetitive

I feel like most of what I have to say is the same thing over and over. Ayden Jane is doing great, but still has a lot to catch up on. She can understand more, learn more, move more... but her starting point is several years behind.

It's entirely exciting and amazing.

It's entirely painful and frustrating.

There are so many great moments.

Her coach noticing the change in her this spring and commenting that she seems to be "outgrowing the quirks she had from whatever that thing is called I told her Ayden Jane has."

The parent of a friend we haven't seen since last fall telling me, she must have learned a lot and worked hard in third grade, They had a great conversation.

Doing pretty stinkin' well in her first swim meet moving up to swimming 50's with turns!

A grandparent and medical professional saying, "Ayden Jane's swimming looks great this summer. Her whole body is so much more organized."

Watching her make friends with a sweet girl on the swim team who simply offered encouragement and friendship. Next thing I know they are chatting away and slip off to play hopscotch.

Reading the book Wonder with her and being amazed by her insight into the characters feelings and motives.

Then there are the times where the amount of information she can take in, multiplied by the depth she wants to understand, divided by the square root of the number of questions humanly possible ... makes my head hurt.

I am sure it must be overwhelming in that brain and body. So much new information coming in. So much to organize....

Go sweet Ayden Jane go. The determination, the love of learning, the joy of life. So much fun to watch. 

Friday, June 9, 2017

Happy

A few people have asked me this week how Ayden Jane is doing. It's a simple enough question but if I am to answer truthfully and completely, it's a long answer. So, here goes.

Energy wise, Ayden Jane is doing GREAT. She is up around 6:30 or so and goes strong all day long. At times it seems like she has too much energy. She will go from playing in the ocean for hours to swimming in the pool for a bit. You would think that would make her tired, or at least calm. I think she is just really enjoying the feeling of energy. That probably sounds weird, but until this summer, she would go pretty well, but we would have to watch for crashes in energy. It always was an effort for her to keep up. She was determined and did not want to miss anything so she would hang in there, but she just goes with ease now. Of course, she is also talking non stop and super fast so it would be nice if she came with an off switch.

I told her the other day that I was going to hide her Pitolisant because I can't keep up. She grinned and told that wouldn't work because she is too smart for me now. I'd say she is enjoying the added energy.

There are other areas we are watching for improvement. One is tone. Ayden Jane is low tone, but not too low. Lots of kids with PWS have significantly low tone. I think Ayden Jane's tone has improved by watching her sit. She used to sort of melt into the sofa and you could see her posture fall apart. Now she looks more typical. She stands up better without leaning into me and she can get going easier. When your tone is low, you sort of need to tell all your muscles to turn on, gather strength and then move. Every time... The muscles turn of the moment you are done actively using them so you have to round 'em up every time. I can see Ayden Jane get going much more quickly now, she can hop out of the chair, change direction, and generally just react more typically.

A great things is that Ayden Jane just feels good. She is happy. She is relaxed about food, now trusting her body that she can hold it together if supper is late or a snack is missed. I think she was more fearful of feeling bad because she ran out of fuel than she was actually hungry (before Pitolisant). This made knowing when and what food was coming always lurk in the back of her mind. She is freed from that now. I asked her the other day if she was okay or we needed to get a snack. It was the first she seemed sort of spacey in a long time. She looked at me like I was crazy, said she was fine, and ran and jumped in the pool.

There's more, but that's all I can think of now.

Tuesday, June 6, 2017

Summer

It has arrived. Summer is here! By 9 AM on Saturday - first school free day of summer, Ayden Jane asked me a bit impatiently if we could go to the beach YET. I put my list of things I had put off all spring to do after school was out on hold... and we hit the beach.

We arrived at the beach before 10 with a packed lunch in the cooler and the day ahead of us. I figured we would be out there a couple hours. Well, Ayden Jane found friends, boogie boarded, played longer... About 2:00 her friends were heading off the beach so I was able to tear her away, but of course she wanted to swing by the pool. Lets just say we made it home about 4:30.

So, that seems pretty amazing as it is. I mean, 6 hours of playing in the ocean and pool. I thought for sure she would collapse and be down for the night. Just to prove me wrong, however, she asked if we could go for a bike ride after supper! I mean, did we really need to do every summer activity in one day! Thankfully, I survived and lived to write about it.

We are working on getting into a summer routine of sorts. This week is pretty much making things up as we go. No camps, no arranged play, just making it up as we go. That pretty much translates into Ayden Jane looking up the weather and telling me we NEED to go to the beach early because it might storm later and she NEEDS to get her wiggles out.

We are getting a small, soft top surf board. It basically looks like a big boogie board with fins in the bottom. She is determined this summer she will be surfing. I am sure she will fall a lot while she figures it out so I just want her to fall on something that will not hurt her. She just loves the ocean. Once she figures it out I see lots of time spent trying to capture a video of her riding a wave! It could be an all summer long project. 

Wednesday, May 31, 2017

Awards

I have been down the awards road with my other kids. I was happy for them with all the awards they earned, but I also knew that many of the academic ones were not earned with incredibly hard work. They were sort of awarded for being smart and doing what they were supposed to do. Congrats was nice and obviously, they could have chosen to squander their brains and behave poorly. So awards were good to acknowledge they were "good kids".

As I go to awards events now with Ayden Jane, it is different. I mean, I see lots of kids getting awards just like my big kids did. It's great that they use their gifts and make great choices. I hear the same sort of awards I have heard in the past.

I think all of this hit Gary today as he was watching Ayden Jane's final award celebration at Elementary School. I was at work, so did not attend and he sent me this text: I want to stand up and tell all these people that Ayden Jane deserves an award!!!! They have no idea whatsoever. I guess that's okay, but she's a brave little girl.

I think it sums up the struggle. On one hand I want to tell people what Ayden Jane's diagnosis says she won't be able to do. I want people to hear how much she is supposed to be struggling. I want people to have an understanding of how much work this kid puts in and how much crap she puts up with from PWS. On the other hand, I want people to see her as a typical kid and not treat her differently. I mean, that's the goal. Make PWS invisible. Trouble is, if they don't know what she fights everyday, they can't know how amazing she is.

So, I believe Ayden Jane would earn the BRAVERY award if there was one. I mean, she forges ahead fearlessly. She is happy to take on the role of being one of the first to try things and knows that others are learning from our mistakes and rewards. She boldly goes where PWS could not before.

I think she would also win the WAKE UP AND DEFY THE ODDS EVERY SINGLE DAY award. I think sometimes it's the every singe day piece that amazes me. No matter whether the day before was a hard fought, miserable,wonderful, exhausting, painful or joyful day. Whether it was a triumphant victory or miserable defeat. No matter, she starts fresh every morning with a positive attitude, ready to give every ounce of effort toward whatever she is doing that day.

That's the stuff awards are made. 

Monday, May 29, 2017

Settling In - New Normal?

I'm not entirely sure what happened to the month of May. We have been taking it a day or week at time and managing to make it to all the end of year events and squeezing in as much time on the beach and in the pool as possible. 

Ayden Jane has been at 18 mg for a month now. I feel like she is evening out. She is learning to control her new super powers and use them for good. She has days where she NEEDS a lot of big muscle movement and deep input. Craves the ocean, wants to rough house, can't sit still, talks loud and feels deeply. There is so much laughter. So much engagement with her friends and siblings (which is occasionally overwhelming) 

I measured her at 57 inches and 91 pounds. She has really grown! I dropped the rest of the ACL and so far so good. We are using very little lactoferrin, less iron, and she has no energy crashes even when we had supper an hour and half late! I asked her if she was okay or needed a snack and she said, "I'll be fine Mom. I don't crash with Pitolisant. I can eat whenever."

And of course she can't wait for summer!!!! 

The last week of school is upon us. It has been an amazing year. The difference in Ayden Jane from last November to this spring is like comparing two totally different children! She goes strong all day long, no naps, no lost hours due to needing to regroup. Awake until 8-8:30 every night and up about 6:30 in the morning. No constant night waking, which means no night waking for the Momma either :)

The arguing still exists but is much better and does not surface unless she is tired or trying to do too much. I don't mean PWS tired, I mean, typical, huge days of beach and pool and friends and water parks tired. 

It is interesting to watch her work through how to do life now that her brain works faster. She is going to need to learn to give people space, to slow down the conversation, dial back the intensity, to let things go. She has spent nine years fighting with every ounce of her being to keep up, to be a part of the conversation. She learned how to manage life that was always a tad faster than she was made to go by working so hard, concentrating hard to understand, working hard physically to keep up, relying on effort and the things she did well to get by. That same intensity and effort now can get a bit obnoxious. What should we do now? That's not how you ____. Constantly and inch a way from whoever she is playing with. Often a bit "in your face". I am hoping her good friends will have patience with her but also that they will be straight with her. and nicely help her get up to speed on these things  

Let the fun begin!

Wednesday, May 17, 2017

Disorganized and Chill

Ayden Jane seems "all jumbled" these days. We have lost glasses, papers at school, forgotten homework ... all things that would have typically sent her into a tizzy of panic. Instead, she is just not worried about any of it. It seems we have swung from overly worried about most all details to sort of 'whatever'. I am hoping this is an adjustment period which will eventually swing to a healthy concern.

On my part, I stopped the acetyl carnitine (ACL) after the last increase in Pitolisant. She was operating so fast that neither she, nor the rest of us, could hardly stand it. She was talking super fast, but still not as fast as her brain was going. The result was a lot of half sentences and gaps in what she was saying. She basically needed a translator. So, part of me wonders if now that she is fully adjusted to the Pitolisant, does she need a touch of the ACL? Questions with no clear answer.... It's the challenge of this entire thing.

I will say she was pretty entertaining last night at the soccer fields. She had to survey 50 people for a math project at school. She was a little shy at first so we did the first one together with a friend of mine. Then she went to a few moms and with me just letting them know it was a school assignment, they were glad to help. Ayden Jane was hooked. She asked her question to 50 different people and recorded their responses. No translator needed and she was so excited.

The entire interaction shows the improvement in processing speed. She was able to explain what she was doing and adapt to questions people She could just plain interact back and forth at the speed of typical conversation.

Now, if we can just get the data displayed in 3 different types of graphs... legibly... we will be in good shape.

The other crazy thing is Ayden Jane can throw and catch!! Seriously, she used to try to throw but it was ugly. The ball never really went anywhere, let alone with any speed or accuracy. We threw a ball back and forth on the trampoline the other night and she could absolutely hit a target and throw with decent velocity. Even catching was vastly improved!