Tuesday, February 20, 2018


Parenting Ayden Jane can truly be exhausting. She is high maintenance. There is managing food, managing meds, making sure she gets enough exercise and enough sleep, watching for signs of illness, helping her sort through the social scene, supporting her academics.... The list goes on. 

It is truly a labor of love. 

When things are going smoothly and she looks good, feels good, behavior is good and she is being successful it is still tiring but so rewarding. When she is in a slump, for whatever reason, it is plain exhausting and burdensome. 

We are currently in a bit of a slump. For Ayden Jane a slump means I stress about every bite she eats. I obsess over every step of exercise. I  worry about every school assignment. I agonize over every bump in the road she may come across, causing her to get upset. I think and rethink through all of her supplements and micro nutrients. Ugh... 

Yes, I am fully aware this is not helpful. Well, in my head I am aware....

It is typical of this time of year for Ayden Jane to be at this point. This year it was mostly brought on by the extended illness... and I know in my head it will all even out as spring and summer return. I guess I had myself psyched up for a winter where this did not happen. A winter where there was not winter slump and we could begin the new year already in great shape and ready to extend to new heights. 

Time to pull up the boot straps, be thankful that for Ayden Jane a slump is just that. Not the end of smooth sailing, just an interruption and we will get back on track in no time.

Saturday, February 17, 2018

Slowly Turning it Around

Things are gradually improving. She is physically still not back to herself, but her stamina is improving. Hoping her weight check tomorrow is good news, or at least not bad news. Food wise, she seems to be on a much better schedule with snack coming earlier at school. This has kept away the metabolic crash, which in turn has made her eat less overall and feel better after school.

This week things will get put to the test. She now has a full schedule with swimming on Monday and Wednesday and soccer on Tuesday and Thursday. She will miss her first soccer game on Saturday to go to Mckenna's tournament.

I thought I'd include this story as part of the "how does Ayden Jane think" lessons. This weekend, Ayden Jane needed to complete a book project for school. She read the book City of Ember in a small group in her class. They also read or used to compare, the graphic novel of City of Ember. The assignment Ayden Jane needed to complete was a comic strip of 6 boxes telling of an event from the book.

Ayden Jane was seriously struggling. She had plenty of time to get started and possibly even finished while in class. She continued to stress over a blank piece of paper. The first thing she was stuck on what picking the event. I was not sure how much of the book she remembered/understood so i asked her to retell the story to me because I had not read it. I was very impressed.

I realized the problem was in picking an event. Ayden Jane wanted to do a comic on an event that was mentioned but not really explained in the book. We talked and she realized that would not work and chose another event. She did great. Then she was stuck while drawing the first frame. She thought the details she remembered (like shading of hair) had to be correct in the drawing. Ummm your in grade 4. No teacher would expect that. The other stuck item was she thought that the words the characters in her comic says had to be direct quotes of words the characters in the book say. How hard would that be??

Finally, after she understood the big picture of what the teacher wanted, she was able to do a fantastic job. Letting go of those details and getting to the main idea is hard for her. She often notices cool details that I do not and then connects what she notices in unique ways. It is a challenge to not lose the unique way she thinks but also help her understand the big picture. She is a good example of thinking differently, not wrongly. It makes for wonderful quotes like, "look Mom, God told the angels to paint the sky!" Or, "I know why they are called hoSPITals. Because they have spit in the middle and spit has germs."

Here's to unique! May she be able to comprehend language and communication well enough to operate with the world but not lose her unique view of life!

Thursday, February 8, 2018

Getting Better

The new food routine is definitely helping. Ayden Jane says she is powered through and doesn't feel bad at all during school now. Yeah... That's how it's supposed to be kiddo. Sorry. Still amazes me how she just accepts things sometimes. I mean, who accepts that at this school I feel bad everyday around 11:30 or so....

She is much better after school too. I think the constant stress on her system each day was making her more worn out in general. She finally got back to running and did a great 1/2 mile. I'd say it's the first successful running since before she got sick prior to Christmas.

She is doing some crazy "throwing up" thing at school. It's bizarre. I don't think it is real throwing up, as the photo evidence I have requested looks mostly like chewed up food that was spit out. I was thinking maybe she was trying to get out of something at school. You know, trying to get me to come pick her up. When I asked her, she looked at me like I was crazy and said, "Why would I want you to come pick me up? I love school."

So, what is the motive? I still have absolutely no idea. I just told her that if she can successfully eat at home and everywhere else on the planet I expect her to chew her food and swallow at school. No more wasting everyone's time with this nonsense.

We will see if that works. It's crazy. I mean, what kid with PWS chooses to spit out food?

Sunday, February 4, 2018

High Maintenance Kid Sometimes Equals Parenting Fail

So this school year we have transitioned into a new school. Her old school went from Kindergarten through grade 3. It was an absolutely wonderful experience. She had great regular ed teachers, the most wonderful school nurse, awesome resource teacher who kept and eye on everything. She had the same special area teachers - music, PE, art, library and they all knew her well. All of these teachers sort of watched her change and grow through the years and it was the safest, sweetest place anyone could possibly go to school.

This year she moved on up to Intermediate School - grades 4-6. It is also a great school and I am sure I will feel the same about it soon enough. I have, however, underestimated the the effects of the transition on Ayden Jane. When she is home and with people she knows and is familiar with she communicated easily and life is smooth. I think I sort of forgot how much time/effort it takes for her to 'process' people. First there is recognizing them. then there is learning to read them. That may sound a little strange, but Ayden Jane does sort of have to learn to read expressions of people one person at a time. It takes her a little while to be comfortable knowing if you are happy, or sad, or angry or joking. So the long hallway was filled those first weeks with all new faces.

The school nurse at her old school was wonderful and a huge support to Ayden Jane. Sometimes her body felt off but she needed help knowing if it was an okay off or a problem. Nurse Sharon always answered her with confidence and learned to read whether she was sick, needed a hug or just reassurance so she could stop worrying and get back to work. Her resource teacher, although not someone she saw every day made it clear to her that she was always available if she needed anything.

Here we are half way through the fourth grade and I am just realizing how 'alone' my kid has been this year. I don't really mean alone because her teacher absolutely loves her and her resource teacher also is fantastic. However, they are new to her... She is not comfortable communicating and therefore just does not do it effectively.

Add to all of this that I realized I have completely messed up her food. With my work schedule I leave before she is up most mornings and she pretty much gets her own breakfast. Lately, it has not been much. She eats a small bar, a piece of fruit and a slice of cheese. She does also get MCT oil and a bit of dark chocolate to wash it down. Ayden Jane used to be a major breakfast eater but over time she is just not too concerned about it.

Where the real trouble comes in, is that I thought she was eating snack at about 9:30-9:45 before special area. She is/was not. She was not eating snack until after 11. Then trying to do math. There have been some pretty significant behavior issues at this time (which I didn't know about last fall).

Piecing it all together, this week we begin adding in mandatory avocado at breakfast (unless Dad wants to cook sausage and eggs or something) and then have a bit bigger snack and eat it around 9:45 or so, before the 10:00 special area. Her lunchtime is not until 12:30 so hopefully this will power her through. Hoping for better learning, better behavior, happy kiddo...

Saturday, February 3, 2018

Dr. Miller Visit

We headed south for our annual visit to Dr. Miller. It is always great to see her and let her squeeze Ayden Jane and chat with her and let us know where things look great and where we can make improvements. I knew this year we went into the holidays looking fantastic and was hoping to skip the winter slump. The flu messed with all of those plans, but at least Dr. Miller felt she still looked good. We definitely need to work on her core a bit, and I'm wondering if there will be anything to show up in the labs we just drew this week.

Ayden Jane seems a little off to me. I am not quite sure how to explain what I mean. Things like a little tired. Reduced exercise tolerance. Talking a big game and wanting to do things but just not being able to get motivated to get out the door and do them.

Bump in gh? Thyroid finally failing? She is sort of doomed there. 2 of my typical kids are hypothyroid and, of course, PWS raises that risk significantly. Vitamin D? Iron? So many things to keep track of.

We also decided to increase her Pitolisant dose slightly. Hopefully there will be some good results from that. In large part, it has just been a pain to cut the pill into quarters and I feel like it leads to dosing that is not consistent and a bit of loss. Today was day 2 which typically is rough. I'm not sure why, but in the past on day 2 Ayden Jane is usually quite tired, has a headache and is grumpy! So far today, it has not been bad so I'll take it! She did take a nap for about an hour and a half and recognized that she was tired and did not want to even try to run. Tomorrow, day 3, should be the rest of the adjustment and hopefully she will rock school on Monday.

Posting about my poor parenting effecting school tomorrow.