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!

Sunday, May 7, 2017

Headstrong

Headstrong is a word I would have used to describe Ayden Jane pretty much her entire life. Sort of just bulldozing her way through "challenges". So, basically, underneath all the PWS is a truly strong-willed child in every sense of the word. This basic nature has served her tremendously well.

So what if she suddenly gained confidence. Processed information faster. Was able to respond quicker. Came to her own conclusions and reasons at the speed of light. Basically, that's what we have going on. Her wonderful teacher, Mrs. M, referred to her as "even more headstrong". Hmmmm.

You see, there are wonderful things about being 'headstrong', and learning how to take on the world tactfully and with a touch of humility are things that are taught from a very young age to those wonderful, strong-willed children. Only, in Ayden Jane's case, she wasn't really capable of learning the subtleties of tact and realizing the effects of her behavior on others. Now she is.

It seems there is an adventure ahead of us. Ayden Jane is learning and processing at an amazing rate but definitely needs to catch up how to do so with respect for those older and wiser and with patience. Don't get me wrong. She is not suddenly an oppositional defiant child who is wreaking havoc. She just has an edge about her that comes across as disrespectful.

Luckily, none of my big kids will put up with her crossing lines of respect and they all get where it is coming from. They will join forces with me and teach Ayden Jane to slow down and listen. They will make her understand that sometimes the answer is no, even when you want it to be yes and can make an excellent argument.

Wish us luck!

Saturday, May 6, 2017

Who is This Kid?

I love the new Ayden Jane, but I am also a little lost because I don't really know how to read her. Or maybe I am simply waiting for something to blow up on me and can't trust it all yet. 

Her blood sugars are more stable than ever, well, as I view from the outside. I mean, she does not 'crash' anymore.

Her mental stamina is through the roof. She took the state testing this past week and the first day included writing an essay. The kid started at 8:30 and did not finish until after 2!! Her teacher said she honestly worked the entire time. She came home happy as a lark and bouncy - just like my typical kids would.

So where's my issue? 

I guess, previously, I could read AJ. I mean, I could look at her and tell you if she needed more gh. Her behavior told me if ACL was too high or b12 too low. I could manipulate her diet to manage blood sugar. Now I have NO idea what I am looking for. Where are my "boundaries" or ranges of .... well, everything? How do I know what's going on in there?

Soooo, I guess I am living in the land of is it all too good to be true? 

I'm curious if she still has a black hole for carntine. Wonder about the gh bump... and pretty much everything else. I mean, it's like the kid has a new metabolism. She is more typical as it comes to food. She has always wavered between forgetting to eat and maintaining weight to gaining a bit too much. I always managed it from the outside by talking her through it.

I'd say the past month really, I have had very little to do with her food. I don't remind her if she skips a snack or a meal comes quite late she does not miss a beat. She has days where she is more hungry and eats extra, but her weight is remarkably stable. We will head out the door with no plan for food and she will tell me not to worry about it. She will be fine. Seriously?

This week has been brutal as far as schedule ect. Long days testing at school. Late nights at the HS with Mckenna in playoffs and chorus concerts. I am barely functioning and she rocking it. Yes, there are lots of questions about peoples expressions and social interactions (apparently she can now 'read' faces and body language but is still learning how she should respond). Yes she has some sensory needs which shows me the neurology is continuing to connect. She no longer gets stuck on topics or questions... and can "take a subtle hint."

I guess, my mind goes to - if there is this big a shift in .... metabolism? something... then how can all that I am giving her not need to be adjusted? I have been managing and tweaking this stuff for 9 years and suddenly have no idea what I'm doing.  I mean, I wouldn't be pumping all this stuff in my other kids. Is there anything I give her that can be over done? I'm thinking labs are in our future, even it its just for Momma's sake. 

Wednesday, May 3, 2017

Whew

That's a big sigh of relief. Testing days 1 and 2 are over! The first day Ayden Jane worked on her test from 8:30 in the morning until after 2! Obviously, I don't know anything about how she did, but I know she tried really hard. She showed her true tortoise self. Not at all phased by those around her, just plodding along doing her thing.

After the test I took her to the beach. Wow did she need to hit the waves! Fresh air and sunshine. Salt water and good waves. It was perfect. She even found a couple of boys who were boogie boarding and she joined in. The ocean is the best reset button I have and I knew she had to get up the next morning and start the entire thing again!

Day 2 she said she finished shortly after lunch. She told me she was done, but was not done going over all her answers before lunch so she had to have silent lunch. She didn't mind too much but she was very glad to report she was finished in time for recess!

Today, she had swim team after the test and then we had a playoff game of Mckenna's to attend. She has been so funny this season. She is totally into the games. She knows all the players names, talks about how great they did, and cheers during the game. (well, as she runs by while playing hide and seek or whatever) She is so proud of Mckenna and is loving the season. Tonight they won a hard fought playoff game and Ayden Jane was complaining about the bad calls during the game and reliving highlights. She not always right in her recount but her enthusiasm is unmatched.

She is so glad Mckenna's team won tonight so there is another game on Friday!

Monday, May 1, 2017

Standardized Testing - Sheesh

Time is flying by. Ayden Jane is loving Pitolisant and her fast brain. She is still getting used to her new super powers so will only continue to improve her skills but she is learning at an amazing rate.

Tomorrow is the SC Ready test. It is South Carolina's standardized testing. Being in 3rd grade it is Ayden Jane's first exposure to such a testing situation. She is a nervous wreck. I think hearing about it and all the hype surrounding it, but never actually having had the experience is hard. It's hard for all of them!

She has been working on something called a text dependent analysis (TDA) for the past few weeks. It is hard but she absolutely gets it. Now it's just time to pray she does not freeze up. Typically she reads the story and likes to talk about it. Then she can organize her thoughts enough to get it all put together and written down. Tomorrow there will be no talking through and if she gets 'stuck' it's going to be ugly.

As she worked through things last night she asked me if she forgot to put in comma's or something if they would still grade her paper. Sounds crazy doesn't it. Here is how it works. Teacher reminds the students (remember, 3rd grade) that they need to use their neat handwriting. She tells them if whoever is scoring the paper cannot read their handwriting they will simply not score it. Yep... Ayden Jane took the leap that if she misses anything, as in anything less than perfection and her paper will be thrown away. Then she asks me if it is okay if she gets a couple wrong. Ummm yes, dear. Just do you best and show what you know. There will be some questions you do not know. Just take your time and be sure to get the ones you know right.

Her teacher is going to give the kids 'breakfast' before the test. It's a great idea for 99 percent of the class... guess who it is just adding more excitement/stress to.

All in all I'd say Ayden Jane is half nervous and half excited. Yep. Excited. I mean... it's an opportunity to work hard and accomplish a goal. That's right up her alley. Hopefully she will still be exited the 2nd and 3rd days!

Sunday, April 23, 2017

Important Event In My Life

I was looking at the news letter Ayden Jane's teacher sends to us at the beginning of the week so we know what she is studying or doing that week. One of the things mentioned was a diary entry of sorts about an important event in her life.

I asked Ayden Jane if she had any important events. She said not really. Maybe going to a big soccer game of Mckenna's? I told her I could think of a lot of important events in her life but most of them she would not remember. Things like getting the ng tube out and eating all on her own so she could come home from the hospital. We talked through a few ideas. 

Mckenna looked at me as Ayden Jane was talking. We were both very intrigued by how unphased Ayden Jane was about things that we understand to be HUGE. I mean... dare I say Pitolisant? There is a cluelessness about her in regard to what she has accomplished. 

I teased her and suggested maybe the day I found and made a chocolate cake for her birthday was important. She told me, "mom, that's not important. That's just food." Now there are some unique words to come out of a kid with PWS.

In the end, I really have no idea what she will pick. Likely, it will be something unrelated to PWS. Maybe, somewhere in that brain of hers, she doesn't want her important thing to have to involve PWS. I mean, she doesn't really want to be that kid with a rare genetic disorder. She just wants to be Ayden Jane - the nice kid who wants the best for everyone. 

Obviously, I will want to read it when she is done!! I am really curious about what goes on inside that noggin of hers. Maybe getting her to write things like this is a way to find a window into her thoughts. I also need to learn to talk less and ask better questions. Patiently listen and not redirect or correct details or fill in pauses. 

Increase to 18

Ayden Jane had been asking to increase the Pitolisant (Wakix) dose to 18 mg. I'm not sure if she felt she needed the increase or if she was just being her goal oriented self. Either way, I wanted to wait until the trip was coming to a close and we were home with nothing major to do.

So, on Thursday, our last day of travels I gave Ayden Jane the increased dose. All was well on Thursday. Friday, especially in the morning she was tired. She was spacey. She would say she wanted to do _____, but then would change her mind because she was too hot, or too tired, or just didn't want to. She napped in the morning. Then we went to the beach after lunch.

She did not complain of headache but it was clear a lot was going on in there. It looks on the outside like she is super spacey. She is slow and moves like she is tired but she's not sleepy. When I took her to the beach and after swimming a bit she just wanted to sit on the beach. Sit and watch people and do nothing. At the same time completely peaceful and totally NOT content. It's hard to explain. If you push her to do anything she gets very argumentative and says her head hurts. When I asked her about it she just said her brain was thinking a lot but she didn't know what it was thinking about.

Saturday came and I was hoping for a big improvement. She started asking to take the dogs for a walk. She could not get it together and finally decided she did not want to take a walk and went to her room. She fell asleep... again. When she woke from that nap, she looked more ready for activity, finally. It's hard to explain.

We went back out to the beach and this time she played hard, sat in the sand a bit but was chatty and drawing things.... Then swam some more. Finally, we went over to the pool and she found a couple friends to play with. They are sweet giggly girls and Ayden Jane still a step slow, but they were patient and Ayden Jane had fun.

Finally, this morning (day 4) she is bouncy and quick and playing jokes on me. No nap, no slow down. We walked the dogs and will go for a dip in the pool later but I think she is really ready for school. Yay. It's going to be a rude awakening tomorrow morning. Well, for me and Mckenna for sure. It will be a long day for Ayden Jane as she will have school, swim team and Mckenna's soccer game to attend tomorrow night.