How far we have come....

On the eve of our annual appointment for the Natural History Study Anna Cate is a part of, I am sitting in the hotel room in New Jersey thinking about how far Anna Cate has come since her diagnosis of Rett Syndrome. Anna Cate has only had her diagnosis with Rett Syndrome for five years, and while it seems like it has been forever, it really hasn't been that long.  What seemed longer to me, was living in the "unknown" zone for the three years prior.

The little girl who didn't have a diagnosis at the ages of three and four was an adorable, burst of energy.  She had this walk where she would swing her arms, like she owned the place.  She was very confident in herself to say the least.  This same little girl also could not sit and work at a task for more than 25 SECONDS, when she was three.  Yes, that is correct, not even HALF A MINUTE.  She had at least four different high pitch screams that all meant something different.  She only had about 20 words.  She wasn't potty trained.  She couldn't feed herself unless it was a finger food.  She would pull her hair out.  It would take her HOURS to go to bed and many nights we would have to drive her around for over an hour to get her to fall asleep in the car.  And then PRAY that when you transitioned her from the car to bed, she did not wake up!  She was afraid of the noise of an airplane flying overhead if we were outside.  Her favorite movies were Elmo and The Wiggles...FOREVER.  She had behaviors when she would get upset.  She had friends, but not friendships.

She loved to play with her ball and nothing came between her and her favorite toy.  She not only had a mean volleyball hit, but also an incredible drop kick.  She loved flipping through magazines and photo albums, and never forgot a face.  She loved to swim in the pool like a little fish.

Today, she is a beautiful ten year old still full of energy.  I would say she is still confident in herself; however, the arm swinging walk, has been replaced  by her hand wringing.  I think that she is still confident in herself because she knows that we and her team at school believe in her.  She now can sit at her desk and work on school assignments for OVER 45 minutes, if not longer.  She loves to learn!!!  She is learning to read this year, and it is AMAZING to see.  I can honestly, say I never thought this would be a possibility for her.  She does not scream anymore, unless she is upset and has a behavior.  I wish that as she got older her behaviors would have decreased, but unfortunately this is not the case.  She has over 70 words (approximations and letters sounds too) that she can say!!!  This is huge!!!  We are very lucky that she can say most names in our family (Mommy, Daddy, B (for Betsie) EI (for Eli), Ne (for Granny), Nanny, Mama, Mimi, Poppy, Papa, Popo, Ah-me (for Amy) and D (for David).  She is potty trained and will let us know if she has to go...this was at least a three year process, and now looking back, it seems like forever ago. But when we were going through the process, I thought we would never get where we are today.  Patience.

She can feed herself with a fork and hold a cup to drink!  She usually falls asleep now within two stories and if she wakes in the night she can put herself back to sleep 70% of the time.  This is all new within the last four weeks and is HUGE for our family.  Finally in ten years and with three children, we are not sleep deprived!!!
Noises are not that big of a deal to her anymore.  She has become used to most everyday sounds that are in her environment.  And I am beyond thrilled that we are no longer watching Elmo and The Wiggles!  We have moved on to age appropriate shows like Wizards of Waverly Place, Hannah Montana, Shake it Up, Good Luck Charlie and her favorite movies are Monsters Inc, Shrek, Soul Surfer, Justin Bieber, all three HSM, and anything Hannah Montana.  And she has FRIENDSHIPS!!!!!  My last blog post was all about her friends.

The ball is still her favorite toy of choice and her hits or kicks have only gotten better.  She never takes her eye of the ball and can even hit it without looking at the ball and nails it at you every time!  She loves to play Connect Four and to swing.  She can tell you "push me" now when she wants to go on them!  This was her FIRST two word combination.  She can also say "good morning" and "good night"!  And not only does she still love to swim, pool is one of her words she can say and we can't even spell it forward or backward in front of her, as she knows what we are talking about!  If we do, she instantly starts saying "pool, pool, pool!" And you better me ready to take her to one, as she will not stop!

A year ago at clinic we were told that tendon surgery was in our VERY near future.  Well, in September 2011  she had the surgery and her walking hasn't been the same since.  It truly has only been seven weeks since she has been able to weight bear with and without her brace on, but I wanted her walking to be back to the way it was yesterday.  I know I have to be patient, but I do not like to see her like this.  I will also be honest, that I am scared that this is also Rett taking another toll on her little body.  And I am scared to hear these words.  I pray every night, that she gets stronger and builds her strength back up in her legs.  I know she will!

Anna Cate is a strong little girl, who NEVER gives up.  I know that she will get through this rough patch and will we climb this next mountain together.  It may be a longer climb to the top, but we will do it.  I am so proud of how far she has come and I can't wait to see in the next year, how far she will have gone.  You amaze me every day Anna Cate!