Tuesday, August 13, 2013

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!

1 comment:

  1. You, and Ayden Jane, inspire me! What great news about the writing. We really need to get Oscar to see Dr. Miller -- perhaps we can make some headway on daytime sleepiness.