Monday, May 30, 2011

In a New York Minute. . . . .

I can't believe that it's only been a week since we were in NYC.  For those that don't know, Roger and I had the pleasure of attending a workshop at the Montefiore Hospital in the Bronx to learn of a method of communication for Juliana.  We had an amazing time! (Side note - on this trip I also discovered that I over use the word "amazing".  Currently looking for a replacement word.  Suggestions welcome)

Our flight out was a bit of a pain in the butt.  Apparently the door to our plane had some difficulty so after we were all boarded and buckled in we had to de-plane and wait for a replacement.  This pretty much sucked because we had plans in NYC.  Our friends, the Gutierrez' were having a "Dareoke" fundraiser for Girl Power 2 Cure.  Better late than never.  We had a blast.  No singing but lots of dancing.  So much dancing that I accidentally flung my flip camera across the bar (ok, so maybe lots of drinks too) and shattered the lens:(  I guess it's a minor casualty to a fun grown up night out.

Gutierrez, Shuberts & Brooks'
Here are the super stars singing "You're Just to Good to Be True"

And this beauty was our requested song "Dancing Queen"

So after that fun night it was time to hit the books the next day in class.  We learned so much, but more of that to come later. 

We had a delicious dinner that night at the Gutierrez' home - but of course completely forgot to take out a camera the whole night.  Here we are in Time Square.  I can't believe it's always this busy!

Here we are after the second day of training.  This is truly an amazing group of women: (From left to right) Dr. Djukic, Stefanie, me, Jenn, Kelly, Suzanna and Monica
 After class we walked around a bit before heading for dinner and guess who we ran into. . . . yes, the naked cowboy!
 We had dinner in Little Italy and then dessert at Chocolate by the Bald Man with my college room mate Gina and her beautiful family. Again no camera:(

Okay - now onto the good stuff.  We attended an introductory workshop on P.O.D.D. (Pragmatic Organization Dynamic Display).  The most basic way to describe this is a book of language.  Below are some pictures of some of the pages to give you an idea.  And I had seen these icons used in different ways, but it's not the same thing.  This is a completely organized system of language.  This is beyond just using icons to make requests like "I hungry" or "Me tired".  This can be used to form complete thoughts and sentences.  Juliana will use eye gaze to scan the pictures and communicate her thoughts.  Some pictures branch to other pages in a natural rhythm of language.  It's really hard to explain with out showing you, so my goal is that we start video taping Juliana in her journey to communication.  She is already doing very well in only one week.  We have been modeling the way to use it and she has been very interested.  So, stay tuned for more on this awesome system of communication and hopefully video as well.  And for those of you wondering, "What about the amazing eye gaze computer you just got?"  Well, this entire book can be transferred to her computer.  The paper book will serve to give her a visual as to how to branch to and get to what she wants to say. It is a slower process than her computer that zooms from one page to another.  The slower process will let her see how she got there.   Also, the paper book is a great back up to use if her computer goes down or if we are in a place where we can't use her computer.

 The icons that have numbers indicate to turn to that page, where there will be more icons on that topic.

And on a final note - I want to say a HUGE HUGE thank you to Dr. Djukic who continues to work tirelessly for our girls.  I don't know where we would be with out you!  Thank you for helping find Juliana's voice, I know she has a great deal to say!

Sunday, May 8, 2011

Happy Mother's Day!

Happy Mother's Day to the two women that made Roger and I who we are today.

Here is a picture of the four of us in Can Cun circa 1997. Boy was that like a million years ago. We were such babies. It was an awesome trip and I will always be grateful for the time we got to spend with you Imma.

Happy Mutha's Day!

To My Mommy!  Thanks for being "ONE BAD MUTHA"!  We love you so much!

Personalize funny videos and birthday eCards at JibJab!

Wednesday, May 4, 2011

Olivia says. . . . . . . .

I have been saying for some time that I really need to start writing down all the things that my dear Olivia says to me on a daily basis.  I need some form of record of all the things she says that I never imagined a 3 year old would say.  So here goes - and please pray for me, if this is what 3 is I can't imagine what the teen age years will bring:

- So it starts early in the morning.  We are heading to school and I'm trying every angle to make some conversation.  I start off positive about how it's going to be a great day and I hope she learns lots today and doesn't get any time out.  No response.  Okay, let's try something else.  Did you sleep well, did you dream about anything. Nothing.  On my third attempt she ever so politely looked over and said, "Mommy, how 'bout we just be quiet and look at the beautiful things outside"  I guess I should be glad she didn't just say MOM Shut Up!
- After school we stop by the grocery store.  As we are waiting in the check out line she screams "Mommy, Mommy - we have that movie!" Ok I say, figuring that it is some Disney movie.  But she insists "Look Mommy Look - we have it!"  So I finally look and it's the People Magazine with the Royal wedding.  How funny - she thought it was a movie.
- At the same check out she discovered the candy display and we had this exchange:
O - Can I have this candy?
Me - No. We have enough candy at home.
O - Oh. What's this?
Me - Twizzlers.
O - Can I have it?
Me - No.
O - What's this?
Me - Gum.
O - Gum that tastes like cake? (that Strawberry Shortcake Extra Gum)
Me - Yes
O - Can I have it?
Me - No. Gum is not for little girls
O - Why?
Me - Gum is only for grown ups.
O - Oh. Well, when I'm a Mommy, you will be a Grandma.  And you will ask ME for gum.  And I will buy it for you because I'm nice.
Wow!  Well at least I can rest assured that I will have gum in my golden years.
- On our way home, out of the clear blue sky she says, "Mommy, when something is wrong I always tell God, and God just tells me "It's okay Olivia, it's going to be ok and I will make a note of it."  I asked her to please repeat that and yes, you heard correctly, God will make a note of your hardships and it will be ok.
- She asked me to play with her antique Fisher Price Little People collection today after dinner.  I love this collection mostly because it was mine when I was a kid.  So anyway, I just found it absolutely adorable that she decided that Roger and I would be living with my mom and dad.  When I asked her where she would live she said, "Me and Juliana are living in this house with Auntie Laura and Uncle Gary."  So get ready Laura and Gary because apparently the girls are moving in with you at some point!

Love that girl!  And finally, I leave you with this picture.  I decided to cut the footies off of her footie pajamas.  Partly because the weather is getting warmer but mostly because they have become a little snug on her.  Ok, who am I kidding they were a lot too snug for her.

Tuesday, May 3, 2011

Forever Angel Star Pageant

A few months ago, I had the pleasure of meeting the Gee Family. They were one of the first local Rett families we met in this area. It's amazing how much we have in common with the family we just barely met. Their beautiful daughter is Sarah,and they are hosting a pageant this June! I would highly encourage you to check out the website and help in any way you can. All proceeds will be going directly to Rett Syndrome Research!

Ways you can help:
- Sign up any girl you know to be a part if this very special event. Get your daughters, nieces, grand daughters etc.
- They are also looking for business sponsorships and donations

Check out the Local Celebrities AGAIN!

Irving Convention Center hosts TexasFest [HD] from DFW Reporting on Vimeo.