Monday, February 25, 2013

Ayden Jane and Noah

Ayden Jane has, quite possibly, the best big brother in the world.  He loves her and does lots of things with her.  They are also jointly responsible for us keeping Tucker.  A lively springer spaniel that we had been 'fostering' for a friend.  The family came to conclusion that they simply could not take the dog back.  There was another offer for him and the joint outcry from Noah and AJ led us to keeping him... for good.

If you look closely by AJ's left knee you can see a black and white dog in the water.  Noah took the picture at the pond in our neighborhood.  Tucker loves to fetch sticks out of the water.

Here they are just clowning around.  Not sure where they were, but I love that my big kids have taught Ayden Jane how to take such cute pictures. LOL.

The caption Noah put under this instagram read,  Ayden Jane does not share the spot light well.  Oh soooo true.

It will be tough on AJ when Noah heads off to college next fall!!

Thursday, February 21, 2013

Sweet Spot

All the therapies and exercise and supplements and gh and .... are a constant monitor and adjust game with the goal of finding the ever illusive sweet spot.  I'd have to say that, for this week anyway, we have found it!!

Lot's of discussion lately about the need for iron along with the b12 made me remember to give AJ her iron.  Pardon the discussion, but too much iron backs her up.  So, I do my best to give her as much as I can without causing that problem.  I'd could say that that is ___ per day, but it doesn't seem to work that way.  So many other things play into it like what her diet has been like or how much good clear liquid she has been drinking or how much good hard exercise.

Basically, every other or every 3rd day seems to do the trick without causing issues.  Of course, that requires me to remember ....  You see the problem.

Anyway, I have given her a few good doses of iron and last Friday we were bumped up to 0.7 gh.  That means the first increase was about 2 months ago and now we are on our second increase.

The results?  Jen and I talked, during PT, about how different her brain is working.  She does not get stuck on a topic and her verbal skills are amazing.  (and non stop)  Jen missed last week and has not seen as much of AJ outside of PT so she really noticed.  Just a big cognitive/verbal/conversational spurt.  The other HUGE thing is that when Jen pushed her a little too far for AJ's liking, AJ started to throw up the defenses and panic/flee.  Within 30 seconds she pulled herself back together and went right back at it.  It is hard to describe how big that is.  Generally speaking, when a child with PWS or autism or other sensory processing issues starts down that slippery slope there is no stopping them mid slide.  Ya sort of just have to ride it out until they come to the bottom of the hill.  Absolutely HUGE that Ayden Jane has begun to be able to reason, gather herself and stop her down slide.  (She has done the same a few other times in the past couple of weeks)

So hooray for the sweet spot and may we stay in it a while!!

Wednesday, February 20, 2013

A Little PT

This is a quick video of something Ayden Jane was doing in PT today.  She is working on this position on her horse and Jen was trying to get her to add some things to it.  She has one leg extended back and is lifting the opposite hand. (The high fives were just a fun way to get her to keep her hand up in the air)  Ayden Jane is balancing on a peanut ball, which is like an exercise ball only long.  I think it looked pretty hard!

This second one is to the side that is harder for her so her counting shortens and her leg is not up as high.  This was at the end of therapy so it definitely was a challenge!

Sunday, February 17, 2013

Feed the Brain and Hope for the Future

Hang on tight while you read this post.  I have some ideas that have been spinning in my head and I am just going to let them fly.  Not exactly sure what's gonna come out.

Truth is, raising kids is a daily challenge.  They are all different in their personalities, talents and needs.  Some are noisy and some quiet.  Some active and busy, others relaxed and just taking it all in.  For some school/book learning is a breeze and others must work hard.  Some are athletic and some artistic.  Some want you to do things for them and some are born declaring their independence. Some feel all things deeply and others must be constantly reminded not to bulldoze over their friends.  Some live for structure and others suffocate with too much structure.

I guess all that to say there is no magic formula or single parenting trend to assure you are, "doing it right."  More like a constant monitor and adjust from a myriad of approaches all covered in unconditional love.

So far so good with our first 3 so called, 'typical' children.  (as if there is a standard that declares typical).  They are unique and our parenting has been the same but very different in raising all of them.   The same in that we want the same for all of them - to know and love God, to discover their talents and develop them, to know right from wrong and make the right choices, to dream big and be capable of making those dreams come true.  Different in how each of them learn, in the amount of help they need along the way, in the way they need to be disciplined...

Now with Ayden Jane I would have to say that our parenting is still the same in what we hope and expect for her.  How to get there is, however, much more complicated!

At diagnosis we were told by our geneticist what her future would hold.  Let's just say it wasn't pretty.  Our first Endo told me outright that I needed to accept that Ayden Jane was not like other kids and to stop expecting so much from her.  That is the short version!

Obviously I have trouble with my listening skills.  I looked at AJ, even at her tiny little age of nearing 1 when all of this happened and I just knew there was so much more inside her than they kept telling me.  I was not yet ready to give up my hopes, dreams and expectations for her future.  We decided that we would parent her the same as the others.  Same expectations...  Deal with the different needs as they came.  At first they were simple things.  Teach her to sit up, crawl, walk, communicate... all the kid milestones.

Now Ayden Jane is 5 1/2.  She has strengths and weaknesses, a DEFINITE personality, a joy of learning and a work ethic like no other 5 yr. old I know.  We choose to find ways to support the ways her body does not work well by itself.  Mostly that is in the form of a diet rich in all things that grow brains and nervous systems.  Lots of good fats in the diet with B12 and iron supplemented.  We know that she needs lots of energy so we add a bit of carnitine to help her use food the best.  We do give her gh because we know her body does not make it.  We add some probiotics to improve the digestive tract as best we can.  PharmaNAC has been the answer to her wacky immune system.  Whew.  Talk about monitor and adjust!

At this point my job is to make sure her brain and body are getting all they need to stay healthy and developing.  It is challenging but the result is amazing.  My mind occasionally wanders to where this path may lead us.  What happens when a bright, creative, independent, goal oriented kiddo grows up to find she cannot control her eating/health so she cannot go 'be' like other kids.  She often tells me she wants to go to Clemson like Kayla.  She wants to be a mom.  (I don't get hung up on the infertility issue, there are other ways to be a mom)  She will want to drive and have a job.  At this point I cannot guarantee her those things.

The flip side of all this is that the research is advancing.  Amazing hope exists!!  Could it be true that all that we are doing now to scramble and protect that growing brain will finally be combined with answers to the future challenge of diet management without constant supervision?  That the keys to the metabolism and complex cascade of endocrinology involved could be discovered and managed in AJ's life time?  What an amazing time to be involved in a tremendous group of people.

If you hear of something called a One Small Step Walk near you, go check it out!

Friday, February 15, 2013

Valentines Day and Endo Visit

I know Valentine's and an Endo visit don't have anything in common, but in our lives they were just a day apart so I am putting them together.

The best part of Valentine's Day was that Ayden Jane wrote her name on all her Valentine's!!!  By the end of it she was able to make a pretty good AJ.  Well, sometimes it was JA and sometimes the "J" hooked the opposite way but it was still a huge accomplishment!!

Her school did the typical party but AJ is totally unconcerned about the candy Yea!  They had way too much food at the party Boo.  Her teacher did a great job helping AJ navigate quantity, Yea!  They served pink lemonade to drink, Boo.  AJ asked her teacher if it was sugar and happily drank water, Yea!  An awesome party mom went out of her way to make a few dark chocolate dipped strawberries so AJ would have something special, oober yea!

Okay, on to our Endocrinology appointment.  In the end Ayden Jane is still a bit heavier than she should be for her height.  That does not excite me, but the good news is that the recent bump in gh has BEGUN to change the shape and tone of her body back toward where she was a year and a half ago.  (lean and muscular)  We only increased slightly in Dec. so we are going to go bump up another 0.1.  That makes her current dose 0.7.  That is still low for her weight and just brings it back up to the dose she was on a year and a half ago.  Since it it weight based even getting back to 0.7 leaves her quite under dosed.

So, after a deep cleansing breath I think we have put last winter behind us.  I think she has corrected whatever was thrown out of balance last winter with time, hard work and the help of PharmaNAC to handle her odd immune system.  We have all the major food holidays behind us and the promise of lots of outside time on the horizon.  We are increasing her gh now and hopefully again in April when we get levels... checked at the sibling study when we see Dr. Miller next.  Let the muscle build!

Also on the upswing has been her energy.  Over the past month we are getting to the point where naps are a thing of the past.  Not to say that she never falls asleep in the car or where ever when necessary, but more of a quick power nap like most kids her age might take.

I go back to Dr. Clark before Ayden Jane starts school next fall and hopefully we will have the numbers to back up a full recovery and an unstoppable future.

Tuesday, February 12, 2013

What is Done is Done

So today was one of those days that is both awesome and challenging for a kid with PWS.  Okay, to some extent for any 5 year old but the added features....

At 8:00 Ayden Jane was to be at the elementary school for the start of her re eval.  She was going to be evaluated by a very nice woman... who AJ has never met.  After she was done she was going to her 100th day of school celebration which she was very excited about.

She did well for the eval (as far as I know) and we were off to school.  I knew it had been stressful or exhausting or something because you could almost see her head spinning inside.  She started signing in the car when she wanted something!!

We arrived at school and she made it into her classroom.  I had to laugh, though as she stopped by 2 other classes to tell a teacher something or see if a friend was there...  All was now right in her world.  The day was going to be a total break in routine with lots of games, counting and chaos.

When I picked her up I was told she had her first 'tantrum' ever at school.  I actually consider it a victory though.  Here is how it went down.

The schedule was thrown and Ayden Jane thought that she could go into house center and play.  Apparently there is a system which involves names... I think it was the usual time in the day when they would use that system.  Ayden Jane did not hear the teacher when she said that because it was a special day they wouldn't be going into centers.....

Apparently AJ had gotten started by pulling out some dishes ect. when her teacher told her that they were not doing centers... and she needed to clean up.  AJ followed that up with a bit of loud arguing and throwing down the dishes!  She has NEVER done that sort of thing at school.  The teachers were great and just said that she could go sit until she got control of herself but that she needed to clean up before she could join in with the group.

So, the good part?  The tantrum was fairly short lived.  She went and sat for a minute, calmed herself and then cleaned up the mess before returning to the group.  The teachers told her what is done is done and lets move on.  Perfect advice and oh so hard to follow for most PWS kids.  I was surprised that even as the teacher told me of the incident AJ did not get all upset and sort of re live it.

Thursday, February 7, 2013


Yesterday Gary and I had the privileged of visiting Coker College where Noah will attend next fall.  Noah went for a few days last fall to work out with the soccer team and check it out but Gary and I had not yet seen it.  We felt like before we had him sign his letter of intent and send in a deposit, we should at least see the place!

Here is the link: Coker College

It was awesome.  It is small, but strong academically and has a very active campus.  The facilities are very nice and there are some amazing expansion plans under construction that Noah will reap the benefits of.  Mainly a new Wellness Center which will be right up Noah's alley.  Also a village of new dorms being built one year at a time with the first completed by next August.

The soccer coach, who will be a big part of Noah's life, is a great guy.  He is the sort of coach you are happy to pass your son off to.  He has high expectations on and off the field and is not only in the business of winning soccer games but also developing quality individuals who are equipped to be successful in life.

We have prayed our way through this process.  Asking for God to give Noah wisdom as he looks at all the options and a real peace about the right choice.  Check.  Asking for God to work out the financial side.  Scholarships are mounting :)

On the way home Gary and I basically talked about all the ways that we see Coker as a great fit for Noah.  He will be off to a land of opportunity next fall and we can now pray for him to take advantage of every one of them!

Sunday, February 3, 2013

Actions Speak Louder...

We all recognize the saying actions speak louder than words.  It is generally referring to how people can tell what we really feel or think by how we act.  The assumption is that we are capable of using words to say what we want people to think of us, but that our actions will reveal our heart.  That we can articulate one thing but that we need to back up what we are saying with proper actions.  Like we can say all people are worthy of respect and then treat someone poorly because they different somehow. I think that there is an additional point to that saying as it comes to Ayden Jane

For Ayden Jane the actions come easy and are definitely loud.  Joy bubbles forth with jumping up and down, tantrums come flying out, anxiety alters the tone of her words, bone crushing hugs show thankfulness, tears roll down with the hint of sadness.  Putting her thoughts and feelings into words when those emotions are high is the challenging part.  For her, the actions come out easily but it is the words we need to make 'catch up' in their expression.  We have been working hard with her to get her to put words to what she is feeling.  It is hard.  Hard for her to do and hard for us to remember to do!

The biggest one is when she is upset we are working on getting her to say what she/we can do to fix the upset.  Sometimes it is as simple as she dropped something and acts as if it has been lost into an abyss never to be seen again.  We are trying to teach her that most things can be 'fixed' if she will simply control the emotion enough to think and use her words.  I am happy to say it is working... a little.  She is starting to problem solve instead of wallow as if tragedy has struck.  Sometimes she will ask for help, sometimes she will talk herself through what she needs to do.

It is a work in progress, but there is progress and for that I am thankful.

Friday, February 1, 2013

So Smart

Tonight we went to a local pizza shop.  Mckenna had won a free pizza with her straight A report card.  The place has pizza, sandwiches, wings... and a salad bar.  Ayden Jane ate salad with me and a few pepperoni's from Mckenna's pizza and was thrilled.

That's all well and good, but here is why it is post worthy!  A woman in the store was enchanted by Ayden Jane.  AJ was doing her usual discussion and analysis of, I don't even remember what anymore.  The woman obviously found her adorable and encouraged her.  Well, that led to an interesting conversation!  After the woman spoke to Ayden Jane she turned to me.  She asked what grade AJ was in and I told her that she will go to Kindergarten next year.  Her response, "she is not even in Kindergarten yet?  She is so smart!  She may just have to skip a grade or two.  I haven't had such a delightful conversation in a long time."

Yep. That sound you heard earlier this evening was my jaw hitting the floor, followed by silence!  At that moment, my mind ran from trying to figure out whether I should just be polite and say thank you and pretend to agree or if I should fill her in on AJ so she could know how awesome AJ is.

So awesome to have those moments where the challenges she faces just fade into the background.