Wednesday, February 22, 2012

Will you be my Valentine?

What did you and your special Valentine do for valentines this year?  I always try to find something fun to do with Anna Cate for her classmates, but more importantly I want the valentines and treats to come from her.  Of course, I could buy valentines, sign them with her name and be done with it. It would be a lot easier and quicker, but then she didn't have a say in them like every other child.  

Like many people, I am addicted to Pinterest and found some really neat tags for Anna Cate to give to her friends.  Once I found the ones that I thought she would like, I had to think how she was going to be able to help me do them.  We picked two different ideas, one for the boys and one for the girls.  

Anna Cate requires help with all aspects of her valentines.  Not only does she need help making them, but I also wanted to make sure they were age appropriate for her peers.  My creative side, wanted them to be fun too!  

I want her to be involved with the process as much as she could, after all they are HER valentines not mine.  So Betsie opened each bag and we counted out the number of candies per bag as she dropped them in.  When we were finished with each bag, I would call out a classmates name and then ask her to point to which tag she would like to put on their bag.  Before attaching it to the bag, I had her stamp her name on the back, as she can not sign her name.  This was a fun activity for Anna Cate and Betsie to share together too!

If I didn’t take the time to help Anna Cate, then her peers would know that I did them for her and I don’t think it would mean as much to them.  Now, they will see that she stamped her approval on all of them and know that she did her Valentine’s Day treats just like them!  We turned a fun activity into a learning experience, but she didn’t see it that way!  Anna Cate worked on her counting, colors, names of her peers, fine motor skills and everything in between!  But to her, she was doing her valentines and having a taste test with the candy!  

Thursday, February 16, 2012

New Jersey Clinic Visit

Anna Cate had a great check up at the Natural History Study clinic last weekend. As you read from my earlier blog, I was going into our appointment with fear of hearing the words that Rett may be taking a bigger toll on her body, but I am THRILLED to report those words were not SPOKEN!  

In fact, we heard how strong she is!  Yes, she is as strong as an OX!  Anna Cate is pretty much solid muscle and the grip that she has on her hands is that of a suction cup on a mirror!  Her doctor couldn’t even get them apart!  However, she has no problem releasing them to hit her ball back and forth with you or when she wants to release them.  

Patience is key in her recovery from surgery, along with therapy.  So we are going to increase the amount of physical therapy she receives weekly and hope that she will regain her strength back quickly!

It is also wonderful to see all the families we have met over the years since Anna Cate’s diagnosis and to see their beautiful daughters too!  I love seeing how the girls have grown and skills they have gained since our last visit.  Being at clinic is the one place where you do not have to explain anything about your daughter, because everyone understands.

As we were leaving, there was one family who came up to us and said that they love seeing Anna Cate every year, as she is a breath of fresh air to them and is their inspiration for their daughter.  As they walked away, Anna Cate said “bye” and blew them a kiss.  Just like I have to remind myself now with her recovery to be patient, I reminded this family that repetition is key.  Anna Cate did not wake up one morning and do all that she can.  We practiced over and over and over again until finally one day it clicked.  And when the day comes ,when a word you have been working on comes flying out, you will realize all the repetition and patience was well worth the wait!

Friday, February 10, 2012

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!

Thursday, February 2, 2012

I get by with a little help from my friends…..

Anna Cate is so blessed to be in a school with so many truly caring friends and teachers.  The amount of support she receives from her peers sometimes is astonishing.  They are by her side and help her, play with her, encourage her and choose her to be their partners in school projects (I think this is my favorite!).   They see her just like one of them, but when they have questions they are not afraid to ask and to learn. 

The smile that these friends bring to Anna Cate daily is priceless.  When I am having a bad day, I like to look at these pictures as seeing the smile on Anna Cate’s face makes me smile! 

Ever since Anna Cate’s diagnosis, my biggest fear would be that she wouldn’t have friends.  Friends are a part of growing up and I did not want Anna Cate to go through life alone besides her family.  I didn’t want her to sit at lunch alone, to not get picked to be partners in class, to not have play dates…the list is endless. 

I have to say that this should have been the least of my fears.  Anna Cate is not only liked by many, but loved.  The girls want to be her partner on projects, they pick her to play with on the playground, they fought over pushing her in her chair when she had her surgery, they pick her to have lunch with them when their parents come to school and they invite her to their birthday parties.  They treat her like their other friends and that is all I wanted for her. 

I do still have a slight fear, that as these friends get older, they may change as I know middle and high school is a very trying environment, but I hope I am wrong.  Especially as Anna Cate gets older, friends are going to be even more important to her. 

A friend of Anna Cate’s will learn so much about friendship from her.  Anna Cate will not talk about you behind your back, Anna Cate will not repeat things told in confidence,  Anna Cate will not make fun of you.  Anna Cate will just be by your side and listen.  She will not judge, she will just be your friend.  Anna Cate will enjoy your company for who you are, no need to impress her.   And if you are lucky she will leave you with her contagious smile until you meet again.

I will not dwell on the future, but did want to mention my little fear.  Instead I will enjoy all the pictures being sent to me from her friends parent’s, all the notes she gets from her friends saying how AWESOME she is, the high fives she gets in school and the smile on Anna Cate’s face when I mention her friends names.  A smile takes a moment, but the memory of it lasts a lifetime.