Trike-a-Thon

Every year Ayden Jane's awesome little preschool does a trike-a-thon to raise money for St. Jude's.  It is a great day and Ayden Jane was soooooo excited.  The 'track' was smaller as the church/school is adding on so we brought Ayden Jane's big bike and her little bike.  She took laps on both!  Face painting was fun and there was a fire truck, coast guard boat and of course playground time.  Afterwards a simple picnic.  Here are a few pictures.

Busy Awesome Day

So, yesterday Ayden Jane had a very busy day.  Wednesdays are just like that for now as we have added OT and Wed. was the only option.  AJ sees PT on Wednesday as well but it just doesn't seem worth moving her for a few weeks.  (OT will stop for summer as it is school based)

She started out with school.  She had a good day 9-12.  I pick her up from school and go straight to OT at the local elementary.  She saw Mrs. Stella from about 12:05 to 12:45.  Mrs. Stella said she did great and was already doing some things much better than she was.  Then we head home (maybe a mile) and get lunch before Jen (PT) comes.  Only yesterday, she was so distracted in the driveway that she didn't eat lunch before Jen drove up.  No matter, onward hoe!

We started PT by showing Jen the new seat drops she can do on the trampoline.  They played there a bit and then it was to the driveway for some balance beam walking.  AJ did great!  She even walked backwards on the beam, a skill she has never been even close to before.  I gave AJ a quick snack as she was crashing and we moved on.  Over all Jen was very pleased.  Definitely some new things firing and she is now getting control of them.

Come to think of it, she hasn't even spilled all week!

After a nap, Gary took AJ, Mckenna and her friend L to the pool.  Ayden Jane swam and swam and swam.  She was jumping in and swimming to Mckenna and bringing back "food' for her puppies.  The food was in the form of diving sticks and basically Mckenna was making up crazy fun things to bring back.  Ayden Jane loved it and I could not even count how many times she jumped in.

Needless to say, she slept GREAT last night!

No Man's Land

Every once in a while I get caught in 'no man's land'.  Basically, to other people Ayden Jane looks great.  She is full of personality and seems like a pretty typical 4 year old.  All things we have worked very hard for!!  All great things!!! All positive!!!  So, I should be constantly over the moon celebrating all the daily victories.

Only, I'm not.

Part of what gets you to the point of doing really well is looking for all the things you can/need to work on.  Seeing all the shortcomings.  Then sorting through which things are just typical 4 year old things, which things are Ayden Jane things and which things are PWS things.  Of the PWS things, then it's trying to figure out which ones are 'fixable' and how to go about it without over doing it....  Tracking food and how it affects.  Tracking supplements and changes you think you can attribute to them.  AAAAAHHHHHH!!!  Feels a bit like constantly monitoring a science experiment.

So, how do you deal with the inherent pressure of all this stuff weighing on you?  Chat with your neighbor?  Oh, no, they aren't dealing with any of this.  In fact, to most people I would sound crazy!  You give your kid what?  Why do you give her that?  (well, meaning of course)  Then any real answer will just glaze over their eyes.  How about checking in with other special needs moms in the area.  Oh, wait.  Ayden Jane doesn't look/act special needs.  She is not even in a special needs classroom.  We don't really fit there.

That leaves online.  There is a great PWS community online.  It is the best family I never asked for, but I have to say, there are a lot of times that an online post is not really cutting it.  I do love hearing about how all the other kids are doing.  It is fun to relive the pure joy of Ayden Jane's first steps with those that are experiencing them now.  Each milestone is so extra awesome because it was so hard fought for and won.

Well, guess that is no conclusion so here are a couple of pictures.  The first is what happens when Ayden Jane spends 2 days on a soccer field!  She was hilarious.  It was time to nap and she did not want to be in the 'itchy grass'.

This one was tonight.  After horses we stopped by a playground we don't go to often.  Ayden Jane loved climbing up this rock wall, over the top and then down the slide again.  I was not allowed to stand near the wall because she could "do it myself".  (Just ignore the random people helping their kids)

  

Supplement Update

Ayden Jane is still 'over firing'.  She is the quintessential bull in a china shop.  Energy and strength abound, however she spends her days running into things, spilling things, hugging HARD, laughing LOUD, talking NON stop, getting really dirty and sweaty.... you get the picture.

Somehow, although she is out of control, she has better balance and coordination.  Just she goes so fast sometimes...

I talked with her teacher at the end of the week and she said that Ayden Jane is wild and loud...  Basically, AJ gets crazy excited over tiny things and is pretty demanding of attention but her awesome teacher says she is just thrilled that AJ is so "full of life."  A great teacher calls it enthusiasm (other teachers might call it lack of self control!)  

We had PT and she saw pretty much the same thing.  Whoa!  Slow down....  

In the past, we have seen a 2 week time frame with Ayden Jane.  She would go through 'out of control' cycles for about 2 weeks and then great new skills would pop up.  I remember once it was jumping, other times it was verbal...  Sort of like some new connections are being made, but she just can't quite control them yet.

So, the decision is/was, dial it back a bit or give Ayden Jane time to work through it.  Her teacher is totally supportive and her PT says ride it out so that is what we are doing.

I feel a bit bruised and battered and like I need to peel her off me at times (deep input seeking much?) but I'm in.  We shall see what this week holds...

Oh, one really awesome piece is that Ayden Jane holds my hand.  I know that sounds like a little thing, but Ayden Jane has never really reached for my hand.  She has always yanked away when I reach for her hand.  Ever since she was tiny, it is just something that bothered her, so I only grabbed on when necessary and then it was with a death grip.  This past week, she has reached for my hand and held it, just to walk together... :)

Decisions

Well, I have to say that the decisions I have to make regarding Ayden Jane are not nearly as hard as some of my friends with special needs kids.  School is awesome so no decisions to make there.  IEP is done and therapies in place.

As a bonus, Ayden Jane loves her 3 therapists!  Mrs. Jen (PT) has been a long time favorite.  She has been working with Ayden Jane since she was 5 months old.  Mrs. Rodgers is the school based ST and has had Ayden Jane for basically 2 school years.  We just added Mrs. Stella (OT) and Ayden Jane really likes her.  Oh, and I can't forget Mrs. Rona who runs the Hugs for Horses program where Ayden Jane rides weekly.  So, she has 4 'therapies' per week of about 45 min. to an hour.  That will be the set up for next school year.  We take a break through the summer from the school based therapies - ST and OT.  Definitely filing that time with swimming!

Supplements are a big source of stress and decisions making.  Well, not so much stress as just plain work.  I tend to over research (if that's real thing) so I understand the why's... of everything I give her.  That being said, her response to things is not at all predictable!  I feel like I spend my day analyzing everything she does when I am playing with the her supplements.  It is a bit exhausting trying to watch, take notes, decide what is significant...  Then I need to sort out what is helping with what... Should I go up slightly or down or are we good....  I would say that right now I am dealing with this with the B-12.  I think it is somewhat over done at the moment, but history tells me that sometimes it just takes her time to use new superpowers.  So, should I back off, or give her time?  Some days I change my opinion a hundred times!

The other thing Gary and I have decided is to make a follow up appointment with Dr. S.  She is an allergist/immunologist we saw a while back when AJ had the nasty infection.  I really liked her and since there is a primary care pediatrician group that shares the office with her, I am thinking it may be a good fit.  I just think that this crazy high eosinophil thing is a piece that indicates we will be fighting sinus stuff every year.  Not sure she can get to the bottom of it, but thinking that she will be more helpful in treating it...

Next up?  We are a part of 2 research studies.  One of them is expanding and requires time in Bethesda MD at the NIH.  How do we do 'all we can to help' without over doing.

Other little things like is it time to do scoliosis x-rays, eye checks...

At least she is back to energetic and quick and goofy and happy.  The rest I will work out over time.

Hmmmm

Well, I am keeping the supplements rolling.  Ayden Jane finished the school week well and her teachers feel she is doing great.  Mrs. J said that Ayden Jane is beginning to seek out friends to play with and doing a great job negotiating how to truly play games with her friends.  This is a big one for Ayden Jane.  I can't say that this was caused by the supplements because it could just be maturity kicking in, but it is apparently a very noticeable difference so I have to wonder.

It has truly been a crazy few days.  Noah turned 17 (more on that another night!) on Thurs. had soccer games Thurs. and Friday nights and the prom on Sat. night.  It was sort of a 3 day festival!  Ayden Jane stayed up ridiculously late on Thursday and Friday nights.  The fact that she was able to without 'crashing' is pretty amazing in itself.  Then Sat. and Sun it rained and rained and rained!  Uggg.  So, basically, it has just been a strange bunch of days so I have no real idea of how any of the supplements are 'working'.

I am also watching closely as we dropped Ayden Jane's gh dosage from 0.7 to 0.6.  Hoping to get her all straightened out soon so we can go back up, but for now this is what we have chosen to do.

Other big news?  We are fostering a puppy!  His name is Tucker and Ayden Jane LOVES him.  Here is a picture of how he greeted Gary on their first meeting.  Sadie who you see in the background is not so sure Tucker is a good idea!

So Far So Good

Well, I have increased Ayden Jane's supplements for a short while now. At this point the changes are that I am spreading out the dosage of B-12 into 2 doses.  The combination has added additional Folic Acid, B-6 and Biotin.  I think these are supporting the B-12 somehow.  (or just going back to spreading out the B-12 is helping)  I then added back the creatine.  After a few days of a little higher 'loading' dose, I have settled into a dose of 1/4 tsp. morning and 1/4 tsp. afternoon/evening.

So far, teachers report great days at school with Ayden Jane thinking quicker.

Today the ribose came and I gave her a dose of 1/4 tsp.  She did not have any issues with blood sugar drops so I will use the 1/4 tsp. twice daily (just like the creatine) and see how it goes!  I can honestly say I did not spread these things out well enough to give really definitive info on what helps what, but the results so far have been so much of a relief it is just hard to be patient.

Ayden Jane is thinking very quickly.  Mostly this creates hilarious things coming out of her mouth but sometimes it makes her hard to understand.  It is like her mind is suddenly faster and her mouth doesn't quite keep up.  It is the first time in a long time I have had to ask her to repeat things several times in a day.  I am guessing that it will even out.  If it doesn't I am okay with it because I love the fast thinking.

PT was postponed this week by Jen who needed to take care of her family.  I am excited to see what she thinks on Friday.  2 weeks ago, Ayden Jane was B-12 washed out and it was before I reintroduced creatine.  Jen was really worried about her and noticed definite decrease in motor planning and tone.  Since then we have 'walked the balance beam' and continually improved.

This video I took with my phone today.  Just figured all this lab/supplement/medical stuff gets boring so enjoy!