Tuesday, March 20, 2018


I haven't said much about Pitolisant in particular lately. Mostly because the other things that have been going on sort of overshadowed it.

Here is where we are with it. Ayden Jane started a bit over a year ago. We went up fairly quickly, okay very quickly. Approximately every two weeks brought about a dose increase. The increments were in 4.5 milligram amounts until we got to 18. By that time we were close to the end of the school year and decided to let things settle in over the summer. Summer's are easy on pretty much all fronts. Of course, other than the keeping her busy front. She wants non-stop action in the summer. (for details on how all that went you can look back to Feb/March of 2017)

After summer I decided to let Ayden Jane settle into grade 4 on the same dose. Not thinking it was all she needed, but wanting her teacher to get to know her as she was on 18 and help me be able to note improvements if I increased the dose. Well, it started off okay, and I increased and then this year sort of crashed and burned on a number of levels. I have not been able to get good info from school. She got sick in December. 

I saw Dr. Miller at the end of January and she was still not well. Dr. Miller gave me the go ahead to bump her dose again. This relieved the need to cut her pills into fourths and allows me to give her a pill and a half, equaling 27 mg. My frustration is that I feel like her brain is better. I think she is processing well and can learn more easily. I believe she is communicating better in general and know she has been way more fun to live with. It's the feel, think and believe stuff. I really want an objective opinion that does not spend as much time with her to be able to help put some parameters on the gains she has made.

Enter her amazing teacher from last year. The one who walked us through those challenging first months and pushed Ayden Jane to new heights last year. Even more importantly, the teacher that Ayden Jane connected with, is able to communicate well with, trusts and loves. The wonderful Mrs. M has agreed to spend a bit of time with Ayden Jane with a two fold purpose. 

1) Help Ayden Jane improve/regain her confidence in her academic abilities.

2) Get a feel for how Ayden Jane is processing, comprehending and learning. 

I can hardly wait!!


Thursday, March 15, 2018


As the days go by, we are enjoying a pretty calm time. Ayden Jane is getting up and out the door on time for school most days. That was not the case much of this year. I am not sure what the change is... In the past she was simply not stressed about whether or not she arrived on time. Nothing we said or did seemed to motivate her. We all know that no steps in the morning routine could be skipped. And, of course, push too hard and you just create meltdown central... Some days she would nearly make it out the door and then decide she would not make it through the day if she did not shower! Seems as though the past few weeks have been smooth sailing though!

Ayden Jane also seems to have a better grip on school in general as well. She comes home and knows exactly what she wants to work on. She does not get a sort of standard homework. She brings home anything not done or asks for me to go over with her anything she did not understand. I have no idea how she is doing from the schools perspective, but she seems much calmer and less overwhelmed by it all.

We have been working on a lot of Khan Academy in the evenings. I am still a bit unclear on whether these assignments are completely required, or if they are supplemental. I'm guessing both to an extent. Ayden Jane really likes when we do these together because she does not understand the video. The idea behind Khan Academy is that there are video instructions for each skill so you can watch the instruction, It sounds strange, but she is not good at obtaining information from video. Even as a small child, she did not watch TV or video. I remember being thrilled at about age 4 that she would watch an entire episode of Curious George and give me a break!

I have enjoyed the Khan Academy with her though. She truly does not want to get answers right just to get answers correct. She gets so excited about understanding what she is doing. I could give her correct answers and she would not enter them unless I showed her how. I hope she retains that love of learning and wanting to understand. If we can keep Khan over summer I will be happy to Khan and read the summer away and be on top of things for grade 5.

We need a win next year. This one has been rough.

Tuesday, March 13, 2018

Settling In

Ayden Jane is doing great. It took so long to get her back on track, and I'm sure there will still be some bumps, but hopefully we have turned the corner toward summer and consistent improvement.

After school she is soaking up any learning I can pour into her. Last night it was fractions. Equivalent fraction, ordering fractions, comparing fractions.... As she grasped one concept and was doing the practice she would say, "when I am done with this, there is another part I have a question about." I was tired and finally told her no more. I had to make her go play.

She also had a great practice at swim team. Her stroke looked really smooth and coordinated. It is so strange how you can even see in her movements when things are on or off track with her. There is a balance that, when maintained, allows her to think and move well. It seems to be immune related as it always falls apart when she is sick. Beyond that, maybe, inflammation? Gut? Nutrition? So many things to keep in check and no real way to know which one/ones are struggling when she struggles.

It is so frustrating to watch her and know that "something" s off. Know that she is getting stuck when she shouldn't be. Know that she is hearing but not comprehending. Know that she has things to say she can't express. Know that she is struggling to relate to her friends when she shouldn't be. Know that she wants to get out there and be active and do... but her body is just too tired. We are coming out of two plus months of this and finally seeing the balance return.

Soon the ocean and the pool will begin to warm up. The sun will shine and the days will be warm. Lots of surfing and boogie boarding and playing and getting pounded by waves. Lots of sunshine and fresh air and time to play with friends. Afternoons at the pool playing sharks and minnows or categories or who knows what else with other kids she meets there.

Oh summer. WE MISS YOU.

Thursday, March 8, 2018

Looking Up

I have not been able to really spend time working on hard brain work with Ayden Jane this year. It has made it challenging for me to be able to check up on her processing, understanding and mental stamina as it relates to learning. I mostly want to know if increases in Pitolisant are improving things. Then illness came and made it impossible, or should I say made her impossible. Then with the addition of zinc she seemed to be heading back to her old self... and beyond.

With the added zinc and increased Pitolisant, Ayden Jane's brain is flying. She sat next to me while I was working the other night. She was working on an assignment on the chromebook where she had to make a brochure (there was a template) about the life of Harriet Tubman. I'll skip the details, but what was amazing to me was listening her read multiple paragraphs on a topic, like childhood, from two or three sources. Think through it all and then summarize what she felt were the important things to include in her project. There used to be sooooo many pieces in that process she would have struggled with. 

Then last night we tackled comparing and ordering fractions with unlike denominators. In 35 minutes she completely understood a least common multiple, how to make an equivalent fraction and independently ordered 11/12, 1/3 and 9/8 by writing their equivalent fractions in 24ths. 

Mind blown. I have taught for many years and that was impressive. 

Her body composition is still not yet really improving but I am loving the brain. For now, I'll take it! 

Monday, March 5, 2018

Long Year

I have not done much posting this year. Mostly, I mean this school year, It has been a crazy busy season in our lives. Most days I feel like I am just treading water and hoping to not mess things up too badly or miss something big. It's a stressful way to do life. Well, it is for me anyway. I much prefer organization and planning.

As things started becoming overwhelming, I just put my head down and did my best to barrel through. In the end, my best is not enough. Ayden Jane got sick anyway. Her weight is on a steady rise I can't seem to get a hold on, school has been a struggle in lots of ways, her attempts are running have started well and ended poorly with illness and injury.... So many little things I just can't seem to get right or fix.

Kayla has gone from being in a foreign country with political problems to waiting to hear on interviews and possible grad school acceptances for next fall. Noah is working and sorting out lots of things and waiting to hear if he receives a position which will allow him to complete grad school. Mckenna is beginning the college search process and very much wanting to go to Wheaton where Noah is, but it is a huge leap financially.

My work is dumping mornings on Gary and more challenging, Mckenna. She has stepped up wonderfully and has accepted the responsibility and challenges but ugh... It is hard to have so many hands in the pot so to speak. Some days Gary, some days Mckenna. Mom packs things and hopes she doesn't miss anything. I also do not pick up but on rare occasions. i feel very disconnected to Ayden Jane's school. I really need to work either part time where I am currently employed or full time but closer to home. And I do mean NEED, for the sanity of our entire family.

I was beginning to feel the pressures of all these things and realized that "fixing" all these things myself is not going to work. All it will do is make me tired and nutty. This weekend I stopped trying so hard and went for a good run and handed it all square in God's hands where it all belongs. It may sound strange, but I have my best times of prayer and conversation with God as I run.

It's an exciting time in our house. Answers to a few of these things will be huge and I can't wait to see where  God leads each member of our little family next. As for me? I will do what I can each day and run.... praying God's guidance and protection over each member of our family. Then I will sleep peacefully and live joyfully. 

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!