Saturday, March 2, 2019

Schedules and Flexibility

Ayden Jane is having a fantastic year. I may say that at the beginning of every post because I will never get tired of typing that! I got such a kick out of her the other night as processed through a change coming up.

Her schedule so far this year was to have exploratory from 8-9 and then settle in to LA until recess time, somewhere around 11:30, give or take a few minutes depending on the day. So it is along academic block, but Ayden Jane has done fine with that. Recess and lunch puts them back into the classroom and hard at work from 12:30 - 2:30 for dismissal.

The change is simply to flip math and LA so that she will have math in the morning and LA after lunch. (and yes, social studies and science are in there as well, I'm just not exactly sure when) When Ayden Jane heard of the change her initial reaction was to get a bit upset. "But I'm doing so good! Why do they have to change things?" Ha, valid.

In the end, she asked me to be sure to include some math foods at breakfast (no clue what a math food is) and keep in mind she has LA after lunch so pack accordingly.  Sure kid. I'm on it. Hopefully she will have a great day Monday and will be 100 percent on board by days end. 

Saturday, February 16, 2019

Growing Up

Yep, I'm back. The full time work is done for now and I am hoping to get a bit of writing back on track.

Ayden Jane is really growing up. I'm not talking about how tall she is getting, even though that is happening too. I'm talking about her conversation. About dealing with social things at school. About caring for others. Okay, parts of her are growing up. There is plenty of her that still loves princesses, and fairies, and playing with toys, and imagination. I am thrilled those parts are content to stay young a little longer.

Growing up is challenging for any kid. Most kids have fears that other kids will laugh at them. Most kids worry that they will get picked on. Some kids worry about tests and grades. A few kids glide through pretty much unscathed but I think if we are honest, that is very few.

Now, how about heading into the wild world of growing up when you are a bit, "quirky, different, unique, weird, interesting, complicated, ...." just pick a word. These are the words that make fascinating and successful adults, but targets in school.

Over the years Ayden Jane has had her share of being made fun of. If that makes you gasp, breathe and think about it. SOME kids are just not nice. Some kids do not understand that all people are valuable. Some kids do not like others who are not the same as they are. She's had a bit of a resurgence of being on the receiving end of unkind words. We had a long chat about the stuff that is said and goes on in school. In the end though, here is what she had to say about it all:

1 - don't worry Mom. I know what he/they say is not true. God made me awesome.

2 - he/they are just mean. I think maybe they had a rough life but I'm not letting them take that out on me any more.

3 - if he/they were ever really, really, mean, C would punch them in the face. (I did NOT encourage this one. don't worry)

So there ya go. Confident, compassionate, protected. I'll take it. I mean, to hear negative things about yourself from your peers at age 11 and truly know and believe that those things are not true? To not lash out but to have at least some compassion for them?

Working on knowing when to ignore and when to speak out. - things like don't touch my desk or stay away from me. Although not nice, those you can just ignore. Calling you names, using bad language, threatening you, telling others to say bad things about you. - speak out.

Basically, Ayden Jane is a great kid. She is smart and perceptive and just when you think she is clueless, you find out she wiser than you could imagine. Some day she will be able to express all the cool stuff that rolls around in there. In the mean time, I enjoy the glimpses. 

Tuesday, January 1, 2019

It's Been a While

I am surprised how long it's been since I have posted. Well, sort of. In November I went back to work for a few months. Then December just full on flew out of control!

So to recap highlights, Ayden Jane managed straight A's for the first time. She was so proud of her all A's. She worked hard for it and totally earned it! As a reminder, she is in all regular mainstream classes and did not receive one bit of special education support the first quarter (more on that later)

Thanksgiving came and we had a nice family meal with all the girls. Ayden Jane does really well at these sorts of times and honestly, I just didn't worry too much about portions being a bit bigger. She was excited to bring over some keto candies that we made as a special desert and she was happy.

On to Decemeber. It was so very, very, very, beyond busy. With the rain and flooding of the fall, most activities were pushed into December and all the typical December excitement and Christmas things were mushed together with them. It was overwhelming for me and Ayden Jane loves to do EVERYTHING so we just over did it. On top of that we passed a nasty, long lasting cold around much of the family. So, much of December is a blur.

I think we FINALLY are putting together the last pieces of handling illness in Ayden Jane. She caught the nasty, snotty, cruddy, endless cold. She handled it pretty well the first few days and then, she didn't. It was like she hit a wall and in a matter of hours she went from okay to looking like a truck ran over her. Her skin color was bluish on her arms and the whitest white on her legs. She felt cold to the touch. Her energy disappeared and a headache came on strong. At that point, we went to the doc and he gave us a script for hydocortisone at Dr. Miller's recommendation. It was definitely the way to go! She turned around pretty fast and was back to fighting the cold well. After another week of fighting the cold we hit up the antibiotics since Ayden Jane has such a horrid ability to fight infection. In the end, Ayden Jane managed to kick the cold with no major complications. Woohoo.

It did, however trigger the strangest tics. She often fidgets her fingers quickly and sometimes makes a few odd facial movements when eating, but nothing life altering. Kayla nicknamed it chipmunking and with a reminder she stops Then this crazy uncontrollable ticiing came on. She could not stop it even when we pointed it out. It became nearly constant. After some thought, consulting smart folks, lots of reading, I decided to try treating it sort of like PANDAS even though I believe it was triggered by a virus rather than infection. Non of this is actually a PWS thing, it's a sucky immune system thing. Anyway, treatment is basically naproxen for inflammation and PharmaNAC because there is some evidence that it increases the effect of the naproxen. (and it can't hurt)

Sure enough,, after one dose of both Ayden Jane was more calm/movements more quiet. She told me after about 30 minutes when I went to check on her that she thought it was really helping because she could make it stop when she noticed she was doing it. That was yesterday and this morning it was still a bit better. I dosed her again and I really think it's working. So hoping she will be back to herself in time for school in 2 days.

She's one tough kid. One thing after another....

Monday, November 19, 2018


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. 

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.