Wednesday, September 19, 2018

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. 

Thursday, September 6, 2018

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.

Thursday, August 30, 2018

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.

Saturday, August 4, 2018


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! 

Thursday, July 5, 2018

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.

Sunday, May 27, 2018


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! 

Sunday, May 13, 2018

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.