On a Journey!

We will be heading this weekend to El Paso for the 3rd Annual Monteleone's Fundraiser.  For those in the area - it's not too late.  You can get a delicious spaghetti dinner, complete with a salad and roll for only $5!!!!!! We will also be having an awesome raffle - prizes include an iPad 2, 45" flat screen tv, Sony digital camera, and many many many many many more fabulous items.  Raffle tickets go for $5 or 12 tickets for $50.  You don't need to be present to win, so if you are interested let me know or go to Monteleone's in El Paso to get your tickets.  A huge thanks to Monteleone's and their amazing team of people dedicated to making a difference for all of our girls with Rett Syndrome.  They are definitely on this journey with us and we WILL find a Cure! 

Fourth of July Festivities!

I can't believe that Fourth of July has already come and gone.  I'm a little late putting these up, but better late than never!

Here we are with little Maddie. 

 The usual Fourth of July Crew - minus Gabbi in this picture.

 Maddie and I again.  My friend Linda took some great pictures of the kids and group, but she NEVER sends me the pictures!!!!! Ugh!  Love you Lin!

And this is tradition for Juliana.  Every year at the parade, despite the marching bands and loud music, she takes a nap.  I can't say I blame her - it was pretty hot.

 So after we got home and everyone cooled off we headed to the pool.  And Juliana's favorite part of pool time is laying out. 

 And Livi's favorite part of pool time is. . . . . . . All of it!



Loud and Clear!

As most of you know we have been working with Juliana on a new communication system called PODD (Pragmatic Organization Dynamic Display) that we learned about in New York and I'm so glad to say it is going so well.  It has literally opened up a whole new world for us.  What we have done now is transferred her entire book onto her eye gaze computer.  It took me about a month to program it, but it has been so worth it.  The cool thing about having the book on her computer is two things: 1. She can navigate independently and 2. she can explore and play with it to discover what buttons mean in a way she can't with the book.  Don't get me wrong, the book is still super important because it's much more portable, requires no batter or electricity and never freezes on us.  And yes, I have tried desperately to get her using them on film, but a. she does not perform on demand and b. once she sees the camera she stops what she's doing to smile.  So we will keep trying on that aspect but I wanted to share some of the super cool things she's told us in the last month:

• She informed us she DOES indeed like dresses.  About 2 years ago Omi got her a super foo foo dress for Easter and she was miserable.  Then for her birthday that same year we got her a big foo foo Minnie Mouse dress and she was so miserable she threw up on the dress. So WE decided Juliana doesn't like dresses.  Turns out she does - just not the super foo foo dresses.
• She informed us her favorite color is Pink!  For reasons unbeknownst to me, we decided some time ago that she didn't like pink and that she was more of a purple girl.  We were wrong!
• She has serious opinions about her food.  I can now read her the options at a restaurant, then ask her yes or no for each choice and she will tell me what she wants.
• She shared with Roger the other day that she only like Mickey Mouse a little bit but now prefers Little Einsteins, Imagination Movers or Backyardigans!  This is huge - I had no idea she was moving on!
• She wants to be Annie from Little Einsteins!  This is so cute because there are two girls on the show; June is the dancer and Annie is the singer.  Well Olivia always declares that she is June because she loves to dance, so Olivia asked her if she would be Annie and she gave her a huge YES!
• When her friend Marisa was leaving one day she managed to say Goodbye with her computer!
• When she was fussy one day I got her book and she was able to tell me she needed to go to the bathroom!
• She is now choosing all her activities from what she wants to play, what book to read or what to watch on tv.
• One day I turned the tv off and she raised her hand, so I brought her book over to her and asked her what she wanted to say.  We scanned all the pictures and she chose "Uh Oh!" because I had turned off her tv. 
• On her computer she has learned how to get to the tv page. To do that she has to navigate through 4 levels of pages but she gets it every time and will repeat "watch tv" over and over until either you put it on or sternly tell her it's not tv time.
• She has been telling us "I love you " with her computer!
• And this one was kind of cool.  We were eating pizza.  I had cut both hers and Olivia's into pieces and Marisa was feeding her.  So she starts to tell Marisa "Don't touch" So Marisa just tells her I have to touch you silly, I'm feeding you.  She continues saying "Don't Touch" So we are all guessing what does she not want her to touch?  Her food?  Then she says "I want to do what the others are doing".  So we look around and everyone is eating. . . . . But they are eating with a fork!  Eureka!  She doesn't want Marisa to TOUCH her food!  She wants to be fed with a fork!!!!!  So we got one out and she quite saying that!  I know to some that may not mean a lot but to us it was HUGE!!!!! 

So we will continue on this awesome communication journey!  I can't wait to hear what else she wants to tell us!  And I promise to try to get some on video!

Weekend Fun!

This weekend was awesome.  Not only did we have a blast with friends and family, but we also realized something.  I'm almost afraid to admit in writing for fear that it will all go away.  But I'm going to say it, things are really starting to get so much better!  In terms of Juliana and Rett Syndrome.  I had heard before that things usually do get better around the age of 5 or 6, and Juliana will be 5 in September, so I guess it's not that crazy.  I guess I just realized this weekend that we can finally do "normal" things.  I know it may not sound like a lot, to do "normal" things, but trust me - this is HUGE!  What do I mean by normal things?  Things like going swimming and staying outside for longer than 30 minutes (before Juliana would over heat and just not tolerate it well and we'd have to go running inside before a melt down.), we played a board game this weekend with some friends and she actually lasted through the entire game and finally we watched a movie, past eight o'clock and it WASN'T Mickey Mouse.  I know, pretty awesome.  So this weekend, in addition to being gratful for the independence of our great country, I am also extremely grateful for the independence that my daughter is gaining in being able to do all of the "normal" things we take for granted!

Here we are playing Pretty Pretty Princes with Olivia and our friend Zelma.  And yes, that is a tan that Juliana is sporting - due to the fact that she can be outside for longer periods of time and she loves to swim!

 Here is Zelma!

 Liv and Juliana

 And here she is going in for the big win!  All she was missing was the necklace!

 And here are the girls watching Tangled!  I LOVE seeing her "Just hanging with girls!"  It absolutely makes my heart melt to see her just being a 4 1/2 year old girl!

 Here we are with the gang at the Fourth of July Parade!  And yes, some things don't change - not yet at least.  Yes, that is Juliana sleeping through the entire parade - marching band and all.  Maybe next year. . . .

Awesome Message

I found this blog on a friends blog (thank you Kelly) and I just fell in love with the message.  I have read it several times since and would like to share with our friends and family.  It really puts this "journey" in prospective. 

http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

It's All About Olivia Today . . . . .

What can I say, but my little one is quickly growing up.  Every day she says or does something that surprises me or just makes me giggle a little.  Here are a few highlights from this week.  Keep in mind it's only Wednesday.

Monday:
First day at dance class.  She's been waiting for this day for weeks.  Her only disappointment was that it was only one hour and only on Mondays. 

Here we were on the way to dance class. She couldn't wait to get those shoes on!

 We got there early so here she is spying on the older girls class.  She was absolutely mesmerized.

 And here she is in her class.  She is on the right and her best friend Faith is on the left.

 And here she is going so fast that my camera couldn't keep up with her.

And here is some video.  Sorry it's sideways, but I couldn't figure out who to rotate it.

Tuesday: We went swimming, just her and I.  She is doing remarkable.  First let me show you some video taken from this past weekend so you can truly see what a fish she is. 

Here is Livi jumping off the diving board and swimming to the edge

So with that in mind, fast forward to this week.  So she's swimming along and all of a sudden she gets water up the nose.  So she gets kind of upset and I give her the good old pep talk.  I told her when you get tired and you don't think you can make it, just push harder, kick harder etc.  So I guess I got a little intense because then she said, "Yeah mommy and you have to make a really mean face like this!" And this is the face she made:

And of course you didn't think I could post without mentioning Juliana, did you?  Here she is, another little mermaid.  And no, she is not sleeping, my little vampire baby doesn't like sun in her face.  Who does?



Which brings us now to today, Wednesday.  Today was her dancing day.  She had been be-bopping around the house today, but at night, right before bedtime, the dancing queen was unleashed.  Here is a little montage of Olivia's"interpretive" dancing.  I'm really not quite sure where she gets these moves from but WOW!



The End of an Era

Well, as anyone with kids knows, one of the toughest decisions you will make comes in finding child care for you infant.  I still remember 5 years ago, I was still pregnant with Juliana and I knew the only place I wanted my daughter was at Mrs. West's daycare.  We prayed for an opening (she was the place everyone wanted to be and the only time she had space available was when her kids graduated to kindergarten).  It was a long shot, but we prayed and by some miracle Juliana got a spot.  It was a painfully hard decision made easy.  Mrs. West house is just that place you could walk into and "just know" it was the right place. 

We watched Juliana grow and change there.  Mrs. West was there when we started to notice something was wrong with Juliana.  She was there through all the tests we went through searching for an answer.  She was there when I found out I was pregnant with Olivia.  She was there when we got the dreaded diagnosis.  And yes, there for all the therapy appointments when ECI would go out to her house.  Juliana formed an immediate bond to her.  And yes, thank God when Olivia was born, there was a spot for her too.  It was awesome having them both there, together at Mrs. West house.  When Juliana turned 3 it was time for her to go to another place that could meet her needs and provide therapy, but Mrs. West continued to be a part of her life.  Here are a few of my favorite pictures from that time.



Did I mention that Mrs. West is an excellent cook.  She introduced my kids to all kinds of fish, every kind of vegetable (including eggplant) all kinds of beans and because of this are both excellent eaters.

Juliana's first piano lesson at Mrs. West house.

This is David, Mrs. West's son.  Her whole family became like our own.

Juliana was like their living doll.  They took such good care of her.

Juliana and Faith.  They literally grew up together.

This is when our little Olivia made her debut.  Of course Mrs. West was there to meet her newest student.

The last class photo

One of the many science experiments at Mrs. West house.  This was the caterpillar one.  Good thing she got that lesson there because I sure wasn't about to do it.

Which brings us to the present day.  This spring Mrs. West decided to retire after 25 years of loving our children.  This has been such a bittersweet moment for us all.  Olivia is 3 and I know she is ready for pre-school.  I know she will be in a good place.  And I know Juliana is in a good place as well, I am just heart broken that this special lady will not be a part of our every day life.  When someone is with you through so many milestones, it's just hard to say good bye.  And I know we are not saying a permanent good bye.  I know she will still be in our lives just not in an everyday kind of a way.  I will miss going to pick up Olivia and falling into her couch, talking about how our days had gone with her and the other moms.  Being surprised with an art or science project they had worked on or a new skill Olivia had learned.  Okay, enough crying!  Thank you Mrs. West and the whole West Clan.  You have been like family to us and we will always have a special place in our hearts for you. 

Here is the official graduating class of 2011

Here is the group singing Juliana's favorite "This is the day!"  As a final performance:

And here is a video that we put together for her filled with just a few of our favorite memories.