Carnitine

So before we ever went to see Dr. Miller I started to notice Ayden Jane was losing weight and looking scrawny across her shoulders. In the past this was a sign her gh was low. She was also starting to get tired earlier in the evening.

I talked through it with Ayden Jane, trying to figure out what she was feeling and she honestly amazed me. We talked about things that could be causing her reduced energy feeling. She described it as a physical tired, not a brain tired. She felt that it was not Pitolisant related because it felt different. She was excited to get lab work done to see if maybe it was gh. I was a little concerned about how labs would go in terms of gh because she was a little sick the week before and that always messes up the gh level. Sure enough, her IGF- 1 was a fair amount higher than it was 6 months ago and raising gh was off the table even though her dose has not been increased in a year and a half.

So now what? After a chat with Dr. Miller she told me I had room to play with Ayden Jane's carnitine supplements so play I did. I made some pretty risky moves and we all paid for it. Oops. Here's the scoop. Ayden Jane requires significant amounts of carnitine and always has. Over years of experience I have learned that Carnitine Fumarate provides physical energy and a dash of Acetyl carnitine seems to really improve brain energy and speed and over all 'enhance' the carnitine usage. I stopped the ACL with each Pitolisant dose increase and then slid it back in, with the exception of this last increase. ACL is apparently a natural remedy for narcolepsy so it all makes some scientific sense. (sorry, I am being tough to follow)

I decided to add back in both CF and ACL  The result was Ayden Jane's little brain was in over drive. Her poor teacher had her hands full with Ayden Jane partnered with a boy she was sweet and kind to the week before and had ZERO patience with the early part of this week. It was not pretty and none of us liked Ayden Jane on this dose. ha. I decided to ditch the ACL for now and keep the added CF and see how this rolled. It was so much better. Sweet, focused, happy Ayden Jane came back to us.

I also noted with the increased carntine that she is not hungry. As in, leaving food on the plate and saying she isn't hungry and doesn't want any more. Time will show if she increases the muscle mass back in and if I see the return of her physical endurance at swim team. Hoping for the best!

And, because I always mess way too much, I will likely try a small amount of ACL eventually. 

I Don't Know When It Changed

This past weekend Ayden Jane and I had the pleasure of heading to Indianapolis for a One Small Step walk hosted by some of our favorite people. Hurricane Florence was blowing into town at a snails pace. Well, honestly, I think a sloth would have beaten the storm in a head to head race. I felt we were safe to stay through the storm but as the approach dragged on and the days of rain and possible power outage lie ahead the big kids voted us off the island. They were unconcerned about the impending hurricane but they had no desire to be locked inside for days on end with our own little tornado of energy.

So Ayden Jane and I made a last minute decision to pack up and head out. Ayden Jane is an easy travel companion and was even willing to read aloud to me to help pass the time.  It was like my own little audio book.

We stayed with wonderful friends who open their home (and giant basement) to us any time we are in town or in need of a stop. Ayden Jane had a wonderful time with their sweet kids. She was thrilled for the attention of H, a teenager who has not lost her ability to be playful. She enjoyed hours of fun playing with B, a sweet, energetic boy a few years younger. And, of course, loved seeing E, a younger version of Ayden Jane.

The biggest purpose of the trip was the walk on Saturday. There were several families with children who have PWS, some I already knew, some I had not. After the day and the conversations and the talk of independent futures "one day" .... I got to thinking.

I don't know when it changed, but my mindset has changed from:

IF Ayden Jane will graduate from HS with a diploma to WHEN she will.
IF Ayden Jane will go to college to WHERE she will go to college
IF Ayden Jane will be able to have a job she loves to WHAT job she will choose.
IF Ayden Jane will live independently to what do I need to teach her to make all of these things come true.

This entire post likely sounds crazy to 99 percent of people. If you have a child with PWS then you likely can't imagine them having such a typical life, learning to be fully independent and manage job, food, money, medical things .... If you don't have a child with PWS, and you know Ayden Jane, then you probably think I'm crazy to have once worried so much about her future.

Somewhere along the way, my thinking just changed. We were told a lot of things when she was diagnosed and one of those was she would never live independently. That she would need to live with us or in a group home. It weighed heavy on us but now, I don't really worry about the future or what it will look like for AJ. I mean, we think about what options will be good for her. We know that she may take the round about route and need extra instruction or help from time to time, but I have no doubt she will find her way. 

Intro to Grains

Since Ayden Jane was 8 months old we have been "grain free". Basically, grains in the form of infant cereals proved to cause improper body composition, in ability to grow, and mute her personality so we threw them out. There were a few select exceptions like occasional quinoa and flax meal.

It was likely a drastic response as the parent but they felt like desperate times (and they kinda were). I needed to make a big change and, although it may sound like it was a hard thing to suddenly remove all crackers,, bread, cereal, pasta along with the obvious cake and cookies, it was a simple straight forward rule. It forced me to get creative and come up with other things to feed a nearing one year old. The improvements were undeniable and I never wanted to go back.

I know it likely sounds strange but even the thought of Ayden Jane eating grains panicked me a little. I looked at food so differently and even went grain free myself for a time.

Now, Ayden Jane is nearing eleven - years that is. After discussions with Dr. Miller and the need for slow burning complex carbs to be available for growth rather than relying so heavily on protein she wants me to try introducing a very small amount of complex carbs into Ayden Jane's diet on a regular basis.

Ayden Jane has occasionally had beans like in chili, but certainly not regularly. Oats are a choice Dr. Miller would like us to try since being a girl with PWS by UPD, cholesterol levels run a bit high. She told me this back in January but I knew I needed to get Ayden Jane to a "better place" before messing with something new. Quite honestly, after she was doing so much better and I was home for the summer and could really watch, I forgot completely about it.

So.... This past Tuesday I worked up the courage to give her something we swore off 10 years ago. I gave her the full fat plain greek yogurt with frozen blueberries she loves AND added 1 Tbs raw steel cut oats and 1 Tbs healthy granola (oats, nuts and seeds). I gave it to her after school and she crashed early that night - 7:00. Then woke up with a belly ache around 3:15 and was up for hours.

She finally fell back asleep about 5:30 and I did not wake her for school. She did wake on her own at 7:15 though and was chipper and ready for the day. It was almost crazy! She went all day long with no problem and had a great day.

So.... where do I go from here? Experiment will continue on the weekend and I will give them to her at breakfast. (that's the goal anyway since I need to find something other than eggs for breakfast). We will see how it goes.

It is crazy how sensitive she can be to tiny changes in diet, supplements or medication. I am so very thankful, however, that I am home and able to work through the nuances that are Ayden Jane.

Grade 5 off to a Great Start

We are 7 days into the new school year. Ayden Jane is confident and happy and learning. Whew!!!

K-3 were such amazing years. There was struggle for Ayden Jane and much to overcome but she was supported in all the right ways and each year brought many moments of joy and much for her to be proud of.

Grade 4 was rough. I honestly did not write much because I did not have a lot that was good to say. Something in the combination of personalities at school, the transition to a new school, me going back to work and who knows what else made for a train wreck of a year. It effected Ayden Jane deeply to the point that her anxiety was through the roof, she was acting like a cornered animal behaviorally, panicky at every minor thing, having night mares, developed significant tics, and even her labs were getting screwy. We pulled her and placed her on medical homebound to get everything to settle.

Needless to say, this year HAD to start well. After the last month being home last year, a summer of pouring positive into her and rebuilding confidence and reteaching behavior, it HAD to start well.

So happy to say it has. Honestly, I don't know what exactly her academics have been these first couple weeks but I do know she is happy. She is confident. She is excited to go to school each day. She is communicating beautifully with her teacher and at home. She talks of friends and things she is doing with a smile and no worry. She can problem solve and not just melt down.

As far as energy goes, the first couple days were exhausting as expected. So much to process, so many new faces, new routines, new books. I imagine old fears were lurking. It zapped most of her energy the first 3 days but this second week she has done fantastic. When I pick her up she is silly and chatty and NOT tired. She's able to just be a typical kid. Can't ask for more than that.

Summer

I know it is cliche to say that summer is going by/went so fast! That's the truth though. I'm not saying there weren't days I thought might not ever end, but overall I am feeling the "I can't believe it is August!!" 

Summer brings reduced stress. Opportunity for camps and fun. Lots of swimming and boogie boarding and a bit of surfing. Lack of schedules. This summer, a return to horse back riding and learning to ride on her own.  Lots of laughter. Ayden Jane is refreshed and ready to tackle grade 5. 

On the medical side, labs are good. Eyes were checked and we don't return for a while. Scoliosis check will be sometime in the fall. Next trip to UFL for endocrinology the end of October. Pitolisant still waiting on the eap to help with the financial piece but importation still open until that happens.

We have managed to do a bit of reading over the summer but little to no math. I expect this year to definitely be a challenge for Ayden Jane. She learned things last year, but I just had the feeling they didn't quite sink in like they needed to and she will have to fill in a little bit shaky foundation as well as build on that foundation this year. 

One thing we typically do during the summer was skipped. No running. It has been a very hot and humid summer. Then came lots of camps. Then the past few weeks rain and storms.... I am still hopeful we will get back on the running trail. Mostly because it is so good for her and she is super motivated to be in great shape when we see Dr. Miller in October. It's going to be a challenge but I will do my best to get creative and find the proper motivation for her. Truth is, she is a decent runner. Somewhere along the way though, she has decided she's not able to do it. I miss that confidence she had before the struggle of last year and the illness of last winter. 

Her health has rebounded. Still hoping for the confidence to make a full recovery. Of course, she is at an age where that can be hard! 

I Know What I Can Eat

Posts have slowed... obviously. It's partially because we are busy. Partially because life is sort of on cruise control. Mostly, however, it's because Ayden Jane is older. The things I would write about seem more personal somehow. I want the blog to reflect life with Prader Willi Sydrome for Ayden Jane. At the same time, she is just a kid who has struggles like any other kid and who wants their struggles broadcast.

That said, I haven't abandoned trying to write her story. I am just working on how to do so respectfully.

The struggle she had today is clearly a PWS struggle. Well, I guess it is really a 'medical diet' struggle. Ayden Jane works hard to understand her diet. She is learning well and proud of herself. Today she was at a camp and the director was concerned about giving Ayden Jane whipped cream on her blueberries. Ayden Jane knows she can have whipped cream but the director texted me anyway. (which I think was totally the correct choice. Better safe than sorry) Ayden Jane, however, is very bothered when situations like this come up and she knows, that she knows, she can have something and people doubt her. It may be more that she thinks they don't trust she's smart enough? Maybe that they think she is not smart? Maybe she partly worry's they think she is lying?  Whatever the reason, it REALLY bothers her. She held it in until she got home and then I got an earful of how mad it makes her that they don't believe her. That she knows what she can have and that she isn't going to eat anything she can't have because it would just make her feel awful and she wouldn't have any fun....

Having Prader Willi Syndrome means having a lot of rules about food. It means having to think with your head and not trust you body. It means having a great deal of self-discipline. At age 10 Ayden Jane is determined to use her head, follow the rules, and have more self discipline than most adults can muster. Great job AJ.

Houston

Last weekend Ayden Jane and I traveled to Houston to meet up with a few of the families that are also taking Pitolisant. Well, the point to the weekend was to meet with Drs. at Texas Children's Hospital to discuss pediatric narcolepsy and Pitolisant and PWS and better characterizing sleep in PWS.

Ayden Jane and I ended up flying in too late to actually meet with any of the doctors as the agenda switched a bit after our tickets were purchased but Ayden Jane had a wonderful time hanging out with her friends.

It was interesting to see how relaxing it was for her to be around kids who operate in her realm, so to speak. They have similar food rules, the have a little slower processing so Ayden Jane is never left behind. They all accept each other for exactly who they are. They totally get it that each one is being the best person they can be and that sometimes it's just hard.

I had a great time watching the kids run around, play hide-n-seek and just enjoy being together. No pressure. Ayden Jane was firing well for most of the weekend. She did crash a bit while we were at the airport. She really wanted to hang out with J for a little while before our plane took off but AJ was really just not much fun. After we said goodbye I finally got smart and found her some caffeine and poof! She was right back on track and just in the nick of time! We got on the plane and then it was delayed... yep, we had to sit and wait a while and if she hadn't rebounded so well it was going to be a long, long wait. She did beautifully. Pulled out a sticker book and dressed the movie stars in outfits and was GREAT.

We returned late Sunday night and I was tired as well but we both got up Monday morning and went about our days.

I need to spend the summer getting her lots of opportunity to hang out with kids. Being a youngest by so many years and having such awesome big siblings, she spends a lot of time with "adults". We pulled her from school and she has been spending even less time with kids her age not to mention that she started acting a bit crazy from all the stress before we pulled her.

I'm out in a couple weeks. Noah comes home. Summer camps and beach/pool days begin. Hoping it is a wonderful summer! 

Overdue Update

I can't believe it's been a month! Okay, I can believe it because time has been flying. When I left off we were considering bumping Pitolisant. I chatted with Dr. Miller and for a few reasons we opted to wait. Mostly, I was grasping at straws to figure some things out that honestly, had nothing to do with Pitolisant.

Ayden Jane did not have a banner year in school. Not sure exactly where it went off the rails but it became more and more obvious that there was no way we were going to get things back on track. It was beginning to really hurt Ayden Jane's health, well being and ability to learn. By this point, Ayden Jane was not sleeping well, waking with night mares, snapping defensively at most comments, her posture was tense and hunched over, her voice unsure and the tics... oh how the tics were developing. She was becoming anxious about food and her weight was rising. Basically, PWS was creeping in as the anxiety escalated. I spoke with Dr. Miller about all of it and she said to pull her from school. She would fill out whatever form I needed but that Ayden Jane needed to be removed from that setting.

I was honestly unsure how it was all going to work but I could not handle watching the tics that shook her body take over. After about 3 days the anxiety seemed to wane. A week in there was so much more laughter. So much better sleep. No more night mares and the tics were down to mild movements. The food anxiety disappeared and eventually the defensive snapping at us relaxed. I was getting my sweet, confident, funny Ayden Jane back. I began to realized just how bad things had been as I saw the relief.

So how has the schooling piece gone? Great. Ayden Jane works so very hard and Gary is home with her. Their routine is to go to dunkin' donuts and get a coffee and work there for a couple hours. (Ironic, I know) Ayden Jane is focused and gets a lot of work done. Her love of learning has returned and she is like a sponge. The other great thing is that she is truly excited to go back to school next year. She is relieved to finish the year this way, but does miss seeing other kids and the activity of school.

Last week she went to her school to take state standardized testing and did great. No problems, no anxiety ... almost gleeful to go. Here's to 4 more weeks of medical home bound, and then SUMMER.

Camp Out and Spring Break

The week before spring break, Ayden Jane's school did a 4th grade camp out. The kids spent arrived at the state park early on Wednesday, spent the night and stayed Thursday until time for school to end. They had lots of activities and learning and fun. Ayden Jane really enjoyed Wednesday - I was not there for most of it - and we slept in a tent Wednesday night. That was hard on her. She did not sleep much and Thursday we ended up going home a bit early because she was DONE. Just tired and not having fun so no reason to push through. 

I received good reports on how she did through the day on Wednesday and enjoyed chatting with a teacher that helped with her class. I was told that Ayden Jane was well behaved and made great connections. The teacher even said she was smart and she liked how Ayden Jane's brain works. So fun when there are people that "get" her and appreciate how she thinks.

The camp out rolled us pretty much right into a road trip for spring break. It was a whirl wind trip with stops in Asheville for hiking and visiting water falls, Chicago to see many friends and to visit with Noah. On the return trip we swung by Indianapolis for a very quick visit with more friends who are part of our PWS family. 

Overall, Ayden Jane did well. The hiking was tough, but she did enjoy most of it. Spending the night in multiple homes, a hotel, lots of car travel. Not typically a great plan for kids with PWS but she rolled with it pretty well. She did get tired which causes over emotional and snacky. That's never fun. 

On this side of the trip, we are settling back into a routine. She is definitely 'mushy' and her core need lots of work from the winter and travel. Her weight is not good. Her sleep is still not back to where it should be. So, what do I do? Make a PLAN.

First up, we are going back to horses. It's just so great for her and we have had a long break. Next, the pool and ocean are beginning to warm up so there will be lots of swimming and boogie boarding in our near future. I am working on a running plan with motivators along the way. And finally, I am going to bump up her Pitolisant on Friday. It typically comes with a bit of weight gain, but at this point we may as well just add that to what we are already working on. Hopefully, the bump with help her get her sleep schedule back on track and maybe give her a bit more daytime stamina. 

We shall see!

Good Computer, Bad Wifi

At times, I need to sum up Ayden Jane's brain for people. The other day this analogy came to me. It is as if Ayden Jane's brain is an excellent computer. She is smart and can connect things well. She loves to learn and has some great skills. She is capable of learning everything she needs to learn to do very well in school.

So why does she have days/times where it seems she is very smart and days/times when she seems to struggle academically or to even put together a sentence?

I think the best description is that she has a good computer (brain), but the wifi is not always great.

-Sometimes it is all in there but waiting for her to respond, or "load the page", is like watching that little circle on your computer spin as say loading.

-Sometimes that loading sign means she has taken in more information than she can process and she needs time for all of it to file in the right slots.

-Sometimes that loading sign means she wants to concentrate on the words you are saying but her brain can't turn off the uncomfortable feeling of her shoes, or how hot she feels, or the background noise you don't even notice, or the new decorations on the wall, or.... you get the picture.

-Sometimes that loading sign means she is running low on food for her brain.

-Sometimes that loading sign means she is just plain too tired to summon the extra effort it takes to process the information you are sending her way.

I have to admit, I love the days were information process quickly and she can learn complicated things with ease. Oh how I love it when anything comes with ease for her.

I need to remind myself sometimes, when I am frustrated with that spinning circle, that it has to be even more frustrating for her. 

Pitolisant

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!!

 

Calm

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.

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.

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! 

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. 

Chronic

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.

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!

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?

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...

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.

Snow

It may not seem like a huge deal depending on where you live, but most all kids in the south dream of the white stuff. Here, in coastal SC, it seems every 8-10 years we get a few inches of snow. Typically, the snow lasts about a day and then the temps rise right back to normal and it all melts away. This year, not so much. It has been a deep freeze here and the several inches of snow which fell on top of the layer of sleet and freezing rain have lasted for days!

Ayden Jane was so excited. She made a snowman, had a snowball fight and Gary even took her sledding! It was a golf course hill but when you live on the coastal plain, you find a hill where ever you can. There were other kids there and she had a blast. Only one near mishap when she was headed straight for the slightly frozen pond and apparently bailed off her sled just in the nick of time. The sled went out onto the ice then floated the ice on the other edge. Oh, did I mention her 'sled' was a boogie board? That's how beach kids sled.

Kayla and Mckenna were awesome and wandered the neighborhood through the snow and threw snowballs with her. Noah was less than impressed now that he has spent a few winters in the north.

So, here we are after just over 3 full weeks off school. No routine, a week of flu, Christmas excitement, snow and frigid temps... so many days of indoor activity. She/we are not used to this!!

She has learned to stay up late and sleep in. A skill I appreciate in the summer but I think it is going to be a rude awakening when she heads back to school on Tuesday. (schools out again tomorrow) It's cool that with Pitolisant the days of the 4, 5, even 6 AM wake up are gone!! At the same time, letting her get into the habit of sleeping in may not have been my best choice. It was wonderful for me though.

I will make an appointment to meet with her teachers this week. There are a few things we need to tweak from last semester. I was so spoiled last year with the bond Ayden Jane had with her teacher and the way her teacher just 'got her'. Not sure we will ever have that awesome a situation again, but I need to get my act in gear and help get the rest of this year back on track.

Happy New Year

As I read the New Year posts around social media and thought back on 2017 I realized it was a pretty amazing year.

At the start of 2017 Ayden Jane was not on pitolisant and the ability to import it from Germany was just being worked out. I knew we were headed to see Dr. Miller for our annual visit and had plans to ask her about starting Ayden Jane because we were in a rough place as far as being able to get through her day. She was struggling the second part of the day at school with focus and just being able to stay awake. She would either fall asleep after school or push through and be in bed by 6 in the evening. Just getting enough functioning hours to do school and a bit of exercise was a huge challenge.

We made it through the process, started Pitolisant, increased dose gradually and learned all we could along the way. Much of that is logged well here through last spring.

Then there was the brief hospital stay with pneumonia that came on fast and furious. So thankful to have amazing ER docs here that have taken the time to get to know Ayden Jane and are now on high alert for her.

Summer came and a wonderful family vacation to Busch Gardens.

I finished on job started a  new one.

Gary had his wrist reconstructed and it is rehabbed and doing great.

Kayla has figured out what she wants to do and hopefully acceptance to grad school will soon follow. She also was able to return to Honduras for a couple months and spend a week in El Salvador.

Noah has officially completed his undergrad degree and begun his graduate work.

Mckenna is rocking school, had a great spring HS soccer season and fall club season. She has done very well and enjoyed her music, both singing and learning piano. Her drawing has been so fun to see come pouring out. So much in that kid who knows where she will end up in life, although she is already narrowing down her college choices.