Latest Running Adventure

So, Ayden Jane has started to talk about running again. She has mostly good memories of last years training and mostly awful memories about how bad she felt running the actual 5k. Running your first long race while recovering from pneumonia is not fun. She ran the first mile okay and then went down hill fast. She was determined to finish, but oiy....

Today we went out a bought new running shoes and then she wanted to pick a training program. She was convinced that the one she did last time was too easy now that she was an experienced runner... such humility.

I was glad to look for something different because the last one was time based and she was so focused on time that her pace was really slow. We googled and a lot of distance based plans seemed to start at a distance that was intimidating for Ayden Jane. I finally came across a plan for kids that seems like a good place to start. Ayden Jane bought in and got super excited. That's really all I need anyway! So here it is:

Run Four Days per Week.

Week 1: Day One: 1/2 mile, Day Two: 1/2 mile, Day Three: 1/2 mil, Day Four: 3/4 mile

Week 2: Day One- 1/2 mile, Day Two: 3/4 mile, Day Three: 1/2 mile, Day Four: 3/4 mile

Week 3: Day One- 3/4 mile, Day Two: 1 mile, Day Three: 3/4 mile, Day Four: 1 mile

Week 4: Day One- 1 mile, Day Two: 1.5 mile, Day Three: 1 mile, Day Four: 1.5 mile

Week 5: Day One- 1.5 mile, Day Two: 2 mile, Day Three: 1.5 mile, Day Four: 2 mile

Week 6: Day One- 1.5 mile, Day Two: 2 miles, Day Three: 1.5 miles, Day Four: 2.25 miles
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I know it's shocking to hear that Ayden Jane had me out the door for the first half mile run today. But I was actually quite impressed. We have not 'gone running' since fall and I had no idea how she would do. I guess I shouldn't be surprised that she rocked it. Even after we had taken the dogs for a 2 mile walk earlier. she ran the half mile at a 12 minute mile pace. I think that is a pretty great place to start!

Now, this does not mean that we will only take 6 weeks to get back up to 2 miles. The beauty of it is we can repeat any given week as many times as necessary. And, if we don't get all 4 runs in during a particular week, life will go on...   

Organized and Focused

Organized and focused. That's the best way that I can describe Ayden Jane's brain now.

Okay, so maybe she doesn't present as entirely organised and focused, but the improvement is significant and has lasted long enough that I think it is a lasting improvement. Hooray!

I'll try to explain what I mean by a more organized brain. One sign is she suddenly has the ability to recall/retell things that happened during her day at school. It has been fun. She has told me what happened in class, is able to retell conversations and even give me clear descriptions of examples they did during class time. One of the impressive academic examples was in math. I was checking her math paper. It was a sheet where she needed to measure things around the house. One blank was for measuring in ft and one was for measuring in inches. When she measured the table height she wrote 2 ft in the one blank and 30 inches in the other. I wanted to correct her because when I looked at it, all I could think of was that 2 ft is not equal to 30 inches. Ayden Jane was able to explain to me that she was to round each unit to the nearest unit. So, when she measured the table height in feet, it was closer to 2 ft than 3 ft. She recalled and explained an example from class that day. I was stinkin' impressed! Absolutely a new skill.

I guess I call this a more organized brain because it's like she takes things in and files them so that she can retrieve them and apply them quickly later. There had been a gap in her ability to do this sort of thing. She would absolutely take it all in, but it always seemed like it was a bit of a mess in there. Like she knew it was in there somewhere but couldn't quite get the pieces to line up. Sort of like information is supposed to be filed neatly in the file cabinet but it came in too fast so it began to pile up on the desk. She took it all in, but then could not find it when she needed to. On top of that, she found that the messier her desk got the more stressed she got.

It's a wonderfully strange shift. 

Independence

Ayden Jane has always been an independent soul. She is determined and would rather work at something for an eternity than accept help. It can be infuriating, exhausting, exasperating. I am sure it is also a big part of the reason she is doing so great.

Lately, the independence has surged yet again. She has taken full control/responsibility for getting herself together for school and out the door in time to be early for school. Now parts of this are not new. She has been dressing herself, brushing her teeth ... Well, let me just give a run down of our morning routine.

Ayden Jane gets up early. Often before my alarm rings at 6:20. She heads out to the kitchen and grabs a fruit and a piece of cheese. Then she turns on the TV and that's how breakfast begins. As she works on the first part of breakfast, I mix up her avocado and get her supplements together. She finishes all of that by about 7:00. Then off to her room to get dressed while I finish packing lunch and snack. In the past, by the time she got dressed and teeth brushed, I washed her glasses, double checked her back pack, filled her water bottle, found her fitbit and got socks and shoes ready to put on. She would then come and sit down while I 'finished her up'.

Lately, she has taken to getting her own socks and shoes and putting them on picking her snack and getting it in the right compartment of her backpack, filling her water bottle, getting her fitbit herself and washing her own glasses. She is double checking me with her backpack and is just totally on top of things. It's pretty awesome.

At the same time, she has taken to doing her homework entirely independently. Not saying she never asks a question but she knows she needs to do it. She manages her time to be sure it gets done. She gets it out of her backpack, completes it, makes sure her name is on and gets after me for things like permission slips. She is totally on top of it.

I know these things are not earth shattering but they are a difference. They are a kid who is growing up. They show a kid who is not just expressing independence, but is also becoming responsible. I think the recent ability to process things and keep up with things has helped her put the missing piece together. She just doesn't need me or anyone else to do all the organizing any more.

Go Ayden Jane. (but don't grow up too fast)

A Little Too Fast

Ayden Jane is settling in on the b complex. I'd say the best way to describe it all is that her brain is fast. It is fast enough that she has gotten into a bit of a verbal confrontation with another student. Nothing terrible, just that when a comment is made by another student, she is now quick enough to 'come back at them'. She does not know how to do so gracefully yet, particularly with the teenage sarcasm she has grown up with being a youngest. Hopefully this will not become an issue since, up until now, she has been really easy going with peers. Small comments made about any of her quirks have just rolled off or gone right over her head. Not saying that kids have been mean to her in any way, just that kids can be very honest with what they are thinking and are not known for tact. 

Secondly, Ayden Jane's brain is so fast she is now positive she knows more than I do. I mean, she was pretty sure before but now, it's a fact, just ask her. Ugh! Again, it's an adjustment. I'm trying to be patient ....

Thirdly, Ayden Jane's brain is so fast that she now makes mistakes and gets things wrong because she doesn't want to write things down or work things out because, "It's so easy." So, instead of taking a faster, clearer brain and apply it to the steps in a problem, she wants to skip the steps because she is sure that the answer that popped in her head is right. 

So, yes. Her brain is faster but she does not have a handle on how to use it properly! I go back and forth between wanting to strangle her and her new found spark. And feeling bad for her because it must be really be hard to suddenly have a different brain to adjust to.

Thankfully her teacher is patient with the adjustment. 

She is showing some signs that the rewiring is an adjustment. She is seeking sensory input like preferring to spin during recess over play with her friends. Wanting to wrestle at home. Constantly on the go.... But we have seen all this before:) Last night Gary took her out to the ocean and she had a good long boogie boarding session. The ocean has always been great for that sensory piece.

I am still not exactly sure what about the complex is benefitting her. I think that the folate is good, but needs to be supported by the other b's. I also have a feeling there is something to the b6, which she has not recently been getting. I don't have it in me to piece each one out so we are sticking with the complex and choosing to just be happy.

MTHFR - The Saga Continues

So far what I know is that Ayden Jane rocked on the b-complex. She was on it for a week and going strong. Fun new super powers seemed to abound. Yes, she was getting a bit tired from time to time but the sort of tired that comes from going extra strong and feeling extra good.

Enter the fall. I decided to add an evening dose. Only, I thought that it should be in the form of straight folate. I believe now, that the folate alone was not a good choice. I mean, I can't say for certain ... but it was UGLY.

The chain of events goes like this. Tuesday a week ago the complex came in the mail and I gave it to Ayden Jane in the afternoon. By Wednesday afternoon the great reports started and the super powers began to show. A week later on Tuesday evening I gave Ayden Jane the extra dose of straight folate. Wednesday. eh. Thursday, not great. Friday, complete unraveling. What did it look like? Arguing, agitated, crying, not able to reason, miserable for all...

Needless to say I skipped the dose Friday night and she went to bed EARLY. She slept off a large portion of the issue and I dedicated Saturday to calm, non stimulating activities. AJ stayed in her PJ's until 11. That has never happened. Then we rode bikes to the library and checked out books. (That's about 4-5 miles one way). After a snack we took a long dog walk and talked. There was lots of giggling today which was a total contrast to yesterday. Finally, after supper Ayden Jane just played with her toys and enjoyed a quiet evening. I didn't even turn the TV on.

Now I need to decide where to go from here. I think (and remember, I'm making this up as I go so I could absolutely be wrong) that the straight folate alone, even at a low dose like 400 mcg is just somehow overwhelming to her system. I have begun to attempt to plow through all the info I can find on the subject and I'm amazed at the interactions and balancing act of all of this. It may be that I just stumbled onto a good starting place for Ayden Jane and it would take a lot of work to figure out what the perfect balance of all the b's is. I'm not sure I have strength for that.

Instead, I plan to keep the daily morning B complex that I have started with and possibly add a second complex every other day or so. The idea of 'pulsing' was mentioned in something I read and it somehow made sense. Anyway, so far the b complex does not seem to keep her up at night like it could have the potential to do. I had started it at night and moved it to morning to prep for the added dose so at least I know that much.

Honestly, I felt so horrible last night. I mean, I had dosed her into a miserable frenzy and then sent her off to school to cope with it all. To top it off, I was slow to pick up on what was going on and fussed at her for her poor behavior - which I had caused. One of those parenting lows. I will be glad when this is all sorted out and I am confident that Ayden Jane is running at optimal effectiveness and then I am taking a break from mad scientist/dr mom.

In The Lead / Cutting Edge / Leading the Pack

In a lot of ways life tends to be a race or a competition. Not saying that it should be, it just sort of ends up that way. We often strive to be 'In the Lead' or 'Leading the Pack'. Who wouldn't want to be on the cutting edge. It sounds like the perfect place to be.

I am thankful for those who lead the pack. In Prader Willi Syndrome, someone led the way by pushing for and administering gh to their child. Over time, people were willing to push the envelope and start gh even younger. There were no guarantees even if it was all based on the best possible science. Those pioneers proved to be correct and the administration of gh is now standard of care for PWS.

Every clinical trial that comes down the pike requires people to take a step in faith as well as science. Science says if we give a person ___ then it will improve ___. But. Somebody has to be the first to try it and learn as they go how to best dose and avoid side effects and, hopefully, prove it is safe.

Like it or not, Ayden Jane tends to be toward the front of the pack. I tend to seek out and try new things as long as the science makes sense and I can be assured of the safety. She was the youngest and one of the first to go high fat/low carb. We figured it out as we went. We didn't even know that she was in ketosis for years, just liked how her body and brain responded and let Ayden Jane show us the way. So much science to explain it all has caught up and thankfully, we were pretty spot on as it turns out in the end.

We began using B12 as it was just an idea. I remember asking my pediatrician about it and him telling me he could assure me it would not hurt her but he did not expect it to make much of a difference. Oh what a difference it made!

I know there were other things along the way, especially before Ayden Jane was two and we found Dr. Miller, but this MTHFR gene and folate thing leave me feeling the same stress as those decisions in her early years. Read, reread, think, ask questions ... Decide on a plan and a supplement - don't forget to research the source and quality of the one you settle on. Now take your best shot at dosing. Then watch the ticking time bomb. Take great notes along the way for the next person addressing the same issue. Try to interpret what you see and adjust timing, dosing .... all over a fairly long time since each change needs a fair chance of at least a few days or week.

Rinse, repeat... It's feels like being on high alert. Sometimes I really wish there was a manual that would just tell me how to keep Ayden Jane operating at optimum levels. Until then, I guess we will continue writing her manual as we go. Maybe it will help the rest of the pack one day.

Public Service Announcement

This is going to be a bit challenging to write without sounding whiny or being offensive, but here goes.

This week was report card time (again). I have four kids and the first three were always straight A students in grade school. I can honestly say I did not post about their accomplishments, (then again, I don't think facebook was a thing) pay them for good grades or other sorts of things. They whipped through homework, never studied for anything and were always rewarded with good grades for their academic abilities. Notice, they were rewarded with good grades for their academic abilities, not for their hard work. Honestly, school was not hard for any of them. I felt it was their job to do their best in school and for that, I would tote them to the extra curricular's they loved ect.

As school became harder we did a few small things to recognize hard work. Whether it was a particular subject or struggling to manage time or stay organized.

Insert Ayden Jane. I see the constant photos and accolades of parents to who are celebrating their students "hard work" and resulting honor roll. Things are in a whole new light now. Even though I was more of the grouchy parent who just expected that the kids did their best in school, they were always on the list for a reward of some sort. Many of the awards they won had little to do with hard work and a lot to do with being smart kids with all the advantages of a supportive home and a fully working neurological system.

I mean, in all honesty, I think there is a lot more reason to celebrate Ayden Jane's accomplishments of B and C in her academic classes in second grade than there ever was for my other kids straight A's. Well, if you are truly rewarding hard work. I could ask for more accommodations and even modifications to the curriculum in order to improve her grades. I could have her sent to a special needs classroom and given alternate instruction. I could do my best to demand an aide for her.... But all of these things would simply be so that she could get A's and B's. I don't know that she would learn any more than she is now and I am sure she would not be working as hard.

So for the families who's kids truly work hard to receive those good grades than congratulate away. I would, however, say be sure the message to your kids is clear. You are proud of them for working hard, learning to use their talents and being the wonderful little people God made them to be. Sort of like, don't let them get caught up in feeling like you love them and are proud of them because of the grades they achieve. All kids are so much more than grades and eventually, they will come across something that does not come easy and the grade may not be an A.

We all know you will still love them to the moon, just make sure they know.