So Excited



Ayden Jane is making a chain to keep up with all the people that are supporting her.  She is so excited for each and every link.  We put the names of those that are supporting her on them and she wants to know who they are and why they think she is so awesome.  

 

 

Thank you to all who are cheering her on.  It has been so much fun to watch her excitement!!

 

http://onesmallstep.fpwr.org/dw/users/aydenjane/Spartanburg2013 

Decisions Decisions

There is so much positive going on the Prader Willi Syndrome community.  There is phenomenal research going supported by parents and loved ones of those with PWS.  There are new ideas coming along all the time.  There are support groups for those who need help with every thing from and IEP's to insurance to a place to scream and be heard to just sharing of ideas as parents.  All great stuff.

As the parent of an amazing child with Prader Will Syndrome I can say I love all the hope that I can see, even if it sometimes seem a little to far in the distance for my liking.

Here is the challenge.  With so much information and varying opinions and ideas, how do you sort through it all and decide the path you want to take?  Which supplements?  How much of the supplement?  Do I count calories and monitor food intake that way?  Do I follow a low carb diet?  Is low carb enough or should I go all out Ketogenic?  Should we eat on a schedule?  What if she is not hungry at the time the schedule says it is time to eat, still feed her?

I guess the question is how do you balance doing the most you can for your child and yet, not lose the time with them just being mom and kid.  You know, just typical, non analyzing, no playing with a therapy in the back of your mind, silly, pointless fun.

Oh yea!  Balance... some days it eludes me.

So Far So Good

We have two days of Kindergarten under our belt.  Woo Hoo!  It has been very entertaining to see Ayden Jane's response each day.  She is obviously a bit over done when she gets through those doors.  She craves a deep hug and doesn't say much at first.  The best strategy has been to talk about something old and familiar and she starts chatting away!

You would think that she would then be exhausted and hit the hay early.  Nope.  The first day she and I ended up playing wrestle mania and chasing all around the house like crazy people for 45 minutes!  She did dose off a bit but only to then return to action and hit the beach and the pool with Gary.  It was actually hard to get her to bed!

Day two she came out quiet, but it didn't last long.  She doesn't really want to talk about school, but she says she likes it and has informed me that she will not be dismissing early for PT once a week!  We walk home from school (3/4 mile) and it seems to help her relax.  At home she had a snack and watched a bit of well earned TV.  Then it hit.  Crazy energy time.  She helped with some work around the house and played with the dogs.  Then it was back off to the beach and pool!  No nap at all and when she got back from the pool at 8 she was WOUND up and hysterical.  Finally in bed by 9 and she will be back at it at 6:30 tomorrow morning.  Whew!

It is fun to see Noah in her.  He was my one that had to deprogram from school for a few minutes and then run hard to get the school day out of his system.  Home work or anything seated and requiring concentration HAD to wait.  No homework right afterschool for him.  So far it looks like Ayden Jane is going to follow suit.  Only problem with that is Noah could run with the neighbor boys and get out all his pent up energy.  Ayden Jane pretty much has to play with ME.  Guess we will find some fun things to do and enjoy being active!

Kindergarten!

All ready for her first day!!

 



The big day has finally arrived.  Ayden Jane was so excited about starting Kindergarten that we had to be on the go for the past few days! 

Grandma and Grandpa took us shopping for new school clothes ect.  Ayden Jane loved the special day of trying things on and picking things out.  She was especially excited about her pink giraffe back pack! 

Next up came meet your teacher day on Monday.  She was able to walk in, meet her teacher, see her room and find some old friends.  As usual, she was very subdued just taking it all while we were actually there.  Then as we were half way out of the building she suddenly said, "but I didn't get to play with all the toys!"  We made it a game where she had to find her room by herself and then she could play for 5 minutes.  Worked out great.

That left Tuesday as the last day of summer and all the school preparations in place.  The weather cooperated and we headed to the beach.  It was perfect.  Ayden Jane rode the waves and swam and was spoiled by Mckenna and her friend as they played with her too.  Then off to the pool of course!  After all that it was time for horses and then a trip to the soccer fields to pick up Mckenna.  All around a perfect way to end summer.  I still had trouble getting her to bed but she woke up with lots of energy this morning.

The morning prep went well with the exception of some getting totally distracted because she was so excited about the back pack!  As we arrived at the school all the parents were walking their little ones in for the first day.  Ayden Jane informed me, "I don't want you to walk me in Mom.  I am BIG and I will be fine."  I tried to get her to let me come from a few angles, but I pretty much would have caused a meltdown if I pushed it.  I can just see her running away from me yelling, "don't follow me!  I can do it myself!"

I do love the independent spirit and it has carried her far!  Can't wait to hear how it went!

New School Prep

The big day is just one week away!  Ayden Jane attended a sweet little preschool for the past 3 years and was known and loved and grew so much.  The staff all knew her and enjoyed her quirkiness and automatically double checked when food was around to be sure Ayden Jane had what she needed. 

This year is the big transition to Kindergarten.  Not only is she now going all day she is in a new school which is MUCH bigger than her little preschool.  There is no way all the staff will know who she is, and really most of them will not have a need to.  (although if I know AJ they will know her soon enough) 

There are a few key folks, however that need to be clued into all that is Ayden Jane.  I emailed her principal and mentioned my desire to check in with some of the staff.  In particular, I want to meet with the folks in the cafeteria, the school nurse, the special area teachers and, of course, her teacher.  The special ed. teacher that will be the point person for her IEP has already been filled in and won't be actively teaching Ayden Jane so I want to make "AJ's rules" clear to those that will see her day to day.

I heard back and she told me when to come in (Monday) and that she would let all of these people know.  I offered to do it in small groups, one on one or in one big group if they prefer.  I am happy to repeat myself as many times as necessary - whatever forum means they are listening!  I am having a little trouble deciding whether to let Ayden Jane ride the bus home or pick her up from school.  Basically our neighborhood is directly across from the school so 'picking her up' simply means walking over and getting her.  That car line is just too dang long!  If the bus brings her she will be dropped off at a corner a little bit closer to our house.  Just means I darn well better be there when the bus gets there!

Well, I guess I am off to gather the necessary papers!  Maybe make my own "Ayden Jane Rules" poster.

The Awesome and the Exhausting

What a few weeks!!  I have been playing with Ayden Jane's supplements over the course of the past month or so.  First we added the carnitine in early July.  It has allowed her to get so much energy out of her diet that her hunger dropped and her energy skyrocketed.  The naps went by the wayside and her goofy, fun self resurfaced. 

I also decided to play with a supplement that is not often used in PWS, but I tried when AJ was little and really saw some good from.  Okay, Dr. Miller suggested I bring it back...  D-Ribose.  I have no way of sorting out what has caused what but here is what is up.

Ayden Jane can now write!!  Okay, maybe I did not make it clear.  One month ago Ayden Jane could read and add and count to a hundred, but could not even write her own name.  The connection was just not there.  She knew the letters, the sounds... but could not make what was in her head come out her hands.  She would cry in frustration, "but all my friends can write their names." 

Let's try it again.  Ayden Jane can WRITE!!  I hope you are doing the happy dance now.

Here is what I came home to the other day.  It is just the beginning of what went on!

 

 

This was the title page to a whole story she was working on.  Mckenna helped her.  At first she just spelled the words out loud to AJ then she wrote out sentences for Ayden Jane to copy.  AJ jumped up and down and cheered for herself.  "I made a 'W' for the very first time!  It is perfect.  I am writing!"

 

It is truly nothing short of amazing.

 

Of course, there is always a 'but'.  During the past week since the brain hand connection is suddenly working, her speech is painful to listen to.  There are two things that seem to be going on to cause this issue.

 

1)  Her ideas are elaborate with lots of detail and connections...  Her brain is soooo much faster than her mouth right now.  Result?  Saying the first half of a sentence 5 times really fast while the brain is working on the rest of it.

 

2)  She is just plain talking so fast her articulation is awful!  My mom actually asked me if she was going back to speech soon because she can't understand her anymore.  Frustrating.

 

History tells us that she takes 2 weeks to process these sorts of spurts and integrate the new skills more seamlessly so that means I have one more week.  Puts her ready for Kindergarten by the first day of Kindergarten! 



This is one of the craziest spurts yet and the tornado of activity and speech issues and general going way too fast and too loud seems proportionate to how awesome the spurt is.  If I make it through one more week it should be smooth sailing to start the school year!

Ayden Jane Runs for Her Future

Ayden Jane continues to amaze me.  We were walking the dogs the other day and talking... and talking... and talking...  I think that is part of the reason Ayden Jane likes to walk so much!

Anyway, we were talking about Mckenna and running cross country and how far it is for Mckenna to run a whole race.  I mentioned the One Small Step 5K coming up in October to raise money to help the doctors like Dr. Miller find ways to help her and keep her healthy.  It will be hosted by her new friend Ellie's family in Spartanburg SC.  Ayden Jane got soooo excited and told me she wants to run it too and help Dr. Miller fix her Krebs Cycle!

So, my 5 year old wants to train for a 5K to help fund medical research.  Her 'training' is going pretty well and she is already beginning to receive donations to her cause!  She started jumping up and down and cheering when I told her!!  I need to keep a map or a list or something visual so she can see how many people out there are cheering her on in her quest.

Here is the link to her fundraising page. 

Ayden Jane's 5K

AJ, like any 5 year old, doesn't really get the values of things, but I know she will count how many people are rooting her on!!

Keto May Hold Answers

Summer is flying by.  So many things to post about lately... so little time.  One of the things that is being discussed in the PWS world is the ketogenic diet.  It is really fascinating.  I am not a nutritionist by any means and really do not know much about food.  Honestly, I could eat the same thing every day and be perfectly happy.

That being said, I do notice how food effects Ayden Jane.  It has been pretty obvious for a while now that Ayden Jane uses fat for physical and mental energy.  Also, that she does not use carbohydrates for much other than to store fat.  How do I know these things?  I'll start with the carbohydrates.

When AJ eats a heavy carb load, she tends to struggle to get words out.  She gets almost sleepy and honestly a little mean.  Dr. Miller explained the Krebs Cycle and it made sense...

So, why do fats work well for Ayden Jane?  I think the answer lies somewhere in the information on the ketogenic diet.  I have not done the food logging and all to figure out how close to keto we are, but as I have 'listened' to people who are truly keto and others trying to get there I am realizing just how much fat Ayden Jane is already eating. 

The idea of a keto diet is to eat a high percentage of fats (good fats like avocado, coconut oil, nuts...) and limit carbs and protein so that you sort of force the body into using fats as it's main energy source - ketones.  Ayden Jane's diet is not truly keto genic because she eats too much protein and because I have not really searched out all the hidden carbs.  For example, onions.  Ayden Jane loves them. 

I really enjoy following all the discussion and I am happy that for now, we are fine without going all out keto.  (which is really hard work)  Also happy that if Ayden Jane starts to have trouble we can go a bit further with her diet.  For now, I will continue to keep her carbs low and focus on ways to get good fats into her.  I am determined to get more creative for her and am almost looking forward to learning to cook better this fall when quantity is no long and issue.  Almost...