Wednesday, May 30, 2012

Swim Team!

Ayden Jane did really well at the swimming 'tryout' tonight.  She was so excited she could barely wait.  She did really well and they okay'd her joining the team!  She is really young for it, but her relaxed nature in the water and her lack of fear about trying things makes her coach-able.

She called Gary on the phone afterwards and told he she made the swim team.  Very cute.  She can hardly wait to get goggles and a swim cap of her own!  I guess I underestimate her ability to understand that her therapies are not 'teams'.  She gets that this is different and special and that she is good at it.

I sooo hope that she really does love it once she begins and that it sticks.  I love the idea of her having a sport of her own and the awesome exercise of swimming couldn't be a better choice! 

Monday, May 28, 2012

Swimming and More

So Ayden Jane's stamina has been gradually improving since the weather has become so nice.  We have been in the pool, at the beach, riding bikes...  Generally on the go.

Today AJ was up and ready for action early.  We were fed and on the beach by 9:30.  The waves were big enough to knock Ayden Jane back toward shore but not so strong that they totally wiped her out.  It was a great combination!  She could not get beyond the breakers so I did not have to keep telling her to come back in.  She took her boogie board and had wonderful time.  After an hour in the water and a little while building sand castles we were off to the pool.

Her swimming is doing great.  She can now get toys off the bottom up to 4 ft deep, swim comfortably across the 9 ft. deep end and I have her pushing off with her feet and gliding pretty far in preparation to start working on swimming strokes.  It is amazing how well she does in the water.  On land she works hard and can keep up.  In water she excels.  She is so comfortable in the water and something about swimming just makes her feel so good.

Wednesday I have her headed for a sort of evaluation to see if we can get her on a swim team.  Likely I will need to do some private type instruction for a bit, but hopefully she can join the group of 5 and 6 year olds.  (yes, she is only 4 but seriously, she is just good in the water!)  I asked Ayden Jane if she wanted to try it and she was so excited about being on a team.  I think she has just spent enough time on the sidelines!  She gets that this would be her team...

So, after 3 hours of beach and pool Ayden Jane was still going strong!  She had lunch and played around home with her toys for a bit then finally fell asleep.  After a bit of a nap she wanted to ride her bike to the elementary school and play on the playground.  It is about 3 quarters of a mile and she went strong.  She played and rode home with no trouble.

It was just such a great day.  It was nearly PWS free.  AJ was uninterested in food, in a great mood and played constantly.  Just an easy day.  Hoping for lots more of those with summers arrival.

Sunday, May 27, 2012

Enough Already

I have just had it with Ayden Jane being congested.  She has also begun snoring at night, although, mostly on her stomach.  We sort of laugh that of course she wouldn't snore in the expected position on her back!  I feel like if it were all allergy related that we would have some seasonal relief by now.

I am heading back to Dr. Streck next Monday and throwing it all her way.  I am guessing that we are headed toward ENT and sleep studies and at least some work on her adenoids if not both tonsils and adenoids.  I guess I have known it is coming but I kept hoping that things would just settle.  Instead, we are chronically congested, waking a lot at night and snoring not to mention naps are no longer optional but necessary.

Just not heading in the direction I want.  Grrrrrrrr.

Wednesday, May 23, 2012


Lately I have been thinking about the many ways that PWS effects Kayla, Noah and Mckenna.  A few things have triggered this like telling Mckenna stories of what she was like at AJ's age, Kayla shadowing Dr. Miller in Florida and Noah being amazing with a friends special needs son.

It is really true that PWS not only affects Ayden Jane, but our whole family.  There are things I hate about how PWS has effected our family.  Like the stress of finances, schedules, pushing AJ to work hard, constant monitoring and worry about things that never even happen - I could name lots more, but you get the picture.  Growing up in a stressful house is not something I wanted any of my kids to do and I THINK we do a pretty good job of not letting the stress get to high.  We laugh a LOT.  My kids honestly enjoy each other and we have fun as a family.  Not a given with the age span, special needs and crazy schedules.

PWS has ingrained a sort of you can do anything you put your mind to attitude across the board.  We approach Ayden Jane with the attitude that she can and will do great things in this world.  What those will be we have no idea, but we strive to help her do as much as she can and don't ever assume that her missing genes will determine the heights she will reach.  Obviously, there will be strengths and weaknesses that will guide her way but we have come to attack everything she comes up against with a 'how should we get around/through this one' in stead of 'will we...'

Individually, being a sibling of a special needs child has effected each of them a bit differently.  (I know, shocker)  Kayla has her eye on medical research.  Not sure what area... or what context yet, but she had a great week shadowing Dr. Miller and some others and loves the clinical side of the research.  She is naturally accepting of special and medical needs and wants to solve things...

Noah is the protector.  He has developed a unique bond with Ayden Jane.  He is totally the big brother. He picks on her and messes with her but somehow she takes it totally as fun with Noah.  I just love to listen to it.  He can also get her to do and say crazy things and just, well, relax.  That sure is valuable in the life of a PWS child!  The interesting thing is that although he talks tough...  He is a softee for special needs kids in general now.   He has a couple of friends with siblings that struggle with autism.  He has the same ability to make them relax and be comfortable and happy around him.

Mckenna, there are so many ways I see 'special needs sibling' in Mckenna.  Of course, partially because she has totally grown up with Ayden Jane and the others were much older when AJ was born.  There is an incredible, strong will within Mckenna.  It comes out as a gentle, encouraging spirit when she is with AJ though.  Gently encouraging Ayden Jane to do everything that the other kids can do.  Just say that AJ won't be able to _________ and Mckenna will already start a plan in action to prove you wrong.  No just is not something Mckenna hears.

Mckenna doesn't really know that she is so strong willed and stubborn, but she has enjoyed listening to Kayla talk about what she was like at Ayden Jane's age.  She retells stories of Mckenna flat out taking Dad on and refusing to cave.  She tells Mckenna how she and Noah cowered, just hoping Mckenna would give in as they just didn't want to see how such a stand off would end!

In the end, I think all the kids have benefited from their roles as special needs sibling.  It has rounded each of them out and taught them that not everyone is equipped the same, but everyone has the same potential to be awesome.  They all see the person, not the disability.  They all have a unique gift to offer those with special needs.

Tuesday, May 22, 2012

Come on Summer!

Soooo looking forward to summer.  Ayden Jane is finished with school and so excited to get to the business of swimming and surfing.  Of course, it has been the coolest, rainiest May I think I ever remember!  The ocean has warmed enough for Ayden Jane. (not me!)

Today I took AJ out to the beach to wear her out so she'd take a good nap before horses tonight.  She had so much fun.  She swam a while, attacking the waves.  A few knocked her over, but mostly she jumped them, dove under them (a trick she learned from Mckenna) and tried to kick them.  After a bit she wanted to take her 'surf' board and ride them.  I went in with her and helped her catch some great rides.  Another storm headed our way so we had to end the fun, but it was so cute to hear her ask if we can come to the beach every day.  YES!  That is my goal for summer.  As many beach days as possible!

As for just how Ayden Jane is doing physically, she is still a bit heavier than I would like.  Honestly, likely not built much different than my others, but I loved the super lean build she had last summer.  I am hoping that her levels of everything are continuing to normalize and that we can go back up a bit with gh.  She is still gooey a lot and needing naps again.

It has been fun to have her out of school and thus more interested, or maybe just more able to do school type activities with me.  It has been great to see her recognize and know the sounds of most of her letters and be able to recognize and put in order numbers from 1-10.  I know that is not genius status, but they are great skills for a kid still waiting to go to pre K.  With our busy schedule this spring, I really did not do much 'academic' with Ayden Jane so it is fun to see how much she has learned.

Monday, May 21, 2012

Spring of Soccer

Soccer has definitely taken over our house life this spring.  Gary coached JV for the high school, Mckenna played club soccer, Noah played Varsity high school soccer and played club soccer for an NC team.  Whew!

It has been fun and exhausting.  Gary is done.  Mckenna is done, but Noah's is still rolling on.  His high school team made it to the semi finals for state but his club team won state yesterday!  It was exciting and he was thrilled to be a part of it all.  On to Regionals in a few weeks!

During all the chaos I have somewhat burnt out.  Not of soccer or kids or... any one thing really.  Just from juggling it all and not having time to just get organized and feel like I am ever caught up.  Not taking the time to run and recharge.  I feel like I was trying to hard to hold on to moments as they were going by at the speed of light!

Yesterday as we drove back from NC as state champion, Noah and Ayden Jane went on one of their goofy spells.  They are so stinkin' funny together.  Noah gets AJ going and she will do anything to perform for Noah (when in the mood).  Kayla and I were laughing and at one point I nearly had to pull over because I was laughing so hard!

Noah had Ayden Jane telling us stories.  Just think about jokes that kindergarteners tell and how little sense they make.  Just string that same thought into a looooong story that just randomly includes things we drive by as we go.  Of course the more we laugh the more outrageous the stuff she comes up with.  Then comes the songs.  Noah gives her a topic and she either thinks of a song to sing with that topic or just makes one up...  All in all, great day.  

Wednesday, May 9, 2012

Kayla Day

Noah went to Clemson and brought Kayla home for us last Fri.  Then Sunday I went with Noah to his soccer game in NC and the girls had a Kayla Day!  Ayden Jane and Mckenna were excited!  They have really missed their big sister.

Ayden Jane is obviously glad to be back in the ocean.  What could be better than 'surfin' with Mckenna and Kayla?

AJ is truly fearless when it comes to the waves!  

Tuesday, May 8, 2012


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.

Thursday, May 3, 2012

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!

Tuesday, May 1, 2012

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)