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.