2nd Annual Golf for a Cure!

I can't believe The 2nd Annual Golf for a Cure is over this year.  Very happy to report that we doubled the amount we raised from last year and that means we are that much closer to a cure.  A huge thank you to all of our wonderful Dream Team that made it happen. 

Here we are the night before the big event for the last minute meeting to go over all the important details. (Check out our sporty Golf for a Cure visors!)

 And here we are the day of the event! Grabbing a quick bite before the fun begins!

 On raffle ticket and shirt sales. . . .

 Check-in table . . . . .

 Don't hide Roger - it's all going so well!

 This was really cool to see all of our golfers getting ready to start

 Here they have all assembled and ready to head out!

 It was a special moment to see the start!

 The Britain Elementary group (minus Barbara)

 Here is most of our Dream Team (still had a few hard workers out on the green)

 This is part of her amazing school team from Clifton Early Childhood Center

 This girl was a trooper.  She lasted almost up to the very end.

 And here is our Dream Team at the end of the night.  Thanks for making this a huge Success!!!!!

Ch-Ch-Ch-Ch-Changes . . . . .

Yes, my friends there are changes going on at the Brooks'.  What kind of changes you might ask?  Changes in our choices of music.  It might not seem like much, but let me tell you, it is.  Juliana was always so easy, because she is very particular about the music she likes.  So WHENEVER she is in the car it is either Mickey Mouse Clubhouse or Imagination Movers or Choo Choo Soul.  Olivia on the other hand has given me a sort of freedom I never had with Juliana - she is a fan of today's hit music!  We jammed last summer to Taio Cruz and yes my friends she gets down with some Avril, Kesha, Katy Perry, Pink etc.  It all seemed so innocent.  I kept telling myself she just liked the beat and rhythm of these songs.  I did get a little concerned when she started singing the Avril Lavigne song "All my life I've been good, but now oooooh I'm thinking what the H#@*!" or when she sang Pink's song raise your glass and she honed into the part where she says, "My glass is empty - that S@&#$!"  I had no idea the girl had such good memorizing skills.  Pretty impressive I think.  But it wasn't until the new Rihanna song came out, you know what I'm talking about. . .  S&M, and Livi exclaims in the car, "Mommy - it's our favorite song!"  That's when it hit me like a ton of bricks, my daughter just declared that her and MY favorite song was a song about SEX!  How inappropriate is that?  I'm sure some of you are completely appalled by my lack of music judgement, but in my defense there is only so much Mickey Mouse one person can take.  So we've hit a fork in the road and I have chosen the road with less curse words or inappropriate topics.  We are now a TOTALLY 100% kid friendly music vehicle.  Our new friend is the Raffi Station on Pandora.  It ROCKS!!!!  And yes, I still get my fix of today's hit music when I am riding solo in my car.  Lesson learned.

But on a positive note, because of her awesome memorizing skills, our little Catholic has learned her prayers.  Here is a recent video of her saying the Our Father and the Hail Mary. 

And as a special treat, I've included another video of Olivia dancing to her newest favorite song "Minnie's Bowtique".  I'm really not sure where she comes up with these moves, but she's pretty amazing!

2nd Annual Golf for a Cure - April 23, 2011

Hey Folks - It's spring time, and you know what happens in spring time, right?  It's Golf for a Cure Time!!!!!

We have a jam packed day planned full of golf, dinner, and of course, raffling off our great prizes!


If you’re planning to golf or attend dinner, please sign up as soon as you can. Our deadline for golf and dinner sign ups is April 18th.
If you've already signed up, purchased raffle tickets or are sponsoring a hole, THANK YOU, THANK YOU, THANK YOU! We will be sending you an informational email with all the details in the coming days.

If you’re unable to attend, you can still help support Golf for a Cure either by making a donation, becoming a Hole Sponsor, coming for dinner OR purchasing your raffle tickets online! That’s right, you don’t have to be present to win and we have some incredible prizes we are excited to be giving away this year. They include:

· Apple iPad 32 GB WIFI Version (value $700)
· VIERA 42 in. (Diagonal) LCD HD TV (value $600)
· 14.2 MP with 3” Screen Digital SLR Camera (value $600)
· Satellite T235-S1370 13.3” Notebook (value $560)
· Xbox 360 250GB Console (value $400)
· Nintendo Wii Console with 2 games bundle (value $290)
· EdgeStar 28 Bottle Wine Chiller- Platinum (value $250)
· Flip HD Camcorder (value $130)
· Ray-Ban Sunglasses, courtesy of LensCrafters
· iTunes gift cards
· Sears gift cards
· On The Border restaurant gift cards
AND MORE!!

Raffle Tickets are:

$10 / each

$50 / 6 tickets

$100 / 15 tickets

We’ve made it easy and simple for you to purchase your golfer spot, Hole Sponsorship, dinner ticket or get your raffle tickets. Just go to www.girlpower2cure.org/golf to process your order.

We cannot say often enough how much your support continues to help move us closer to finding a cure. Our goal: keep the research AND Juliana moving forward! We know we wouldn’t be able to help make that happen without YOU! Thank you for all you continue to do with your donations, thoughts, prayers, and time spent helping us!

Hope to see you there!
 
Please share this with everyone you know!

Top 15 List!

So, yes!  It has been quite some time since our last post.  It has definitely not been from a lack of blog worthy events. . . . actually quite the contrary.  Lots of blog worthy events and no time to keep up with them.  The last post was kind of Debbie Downer, but I'm happy to report this blog is full of many more ups, than downs.  So. . . . . drum roll please. . . . . Here is the top 15 events that happened since our last post!

1. The weather has really turned around and we've had so many fun days outside.  We are really starting to get some good use out of swing set (Thanks so much Beth)! 

2. Shopping continues to be me and Juliana's favorite pastime.  Here we are at Target trying on some very fashionable shades for the summer.  Why do they look like they might be from the Jersey Shore?

We are so desperately trying to turn our little home body Olivia into a shopper.  Slow baby steps.

3. Happy Fat Tuesday!  This is Becky, from Roger's work sporting her hand crafted Mardi Gras mask.  Their work is still fun and they had a mask making contest! Funny how Roger failed to send me a picture of him in his mask.  Oh well - thanks Becky for being such a good sport!

4. The Tobii has arrived!!!!!!  Yes, ladies and gentlemen, Juliana has received her very own eye gaze computer.  It is awesome!  We haven't really started to routinely use the device yet.  We have used it to play Candyland with Juliana and read some of her favorite books.  We are getting formally trained next week on how to program it and then we will start sending it to school and therapy.  I can't wait to see where this computer will take us!

5. Brooks' cleaned up pretty good!  Here we are at our friends' wedding.  Sadly, it was the first time we had gotten all dressed up and out on our own in awhile.  It was like a real "date night".  Really beautiful wedding and really fun night out!

6. Spring Break!!!!  Juliana and I decided to take a nice relaxed break.  Omi and Opi came into town and we did the usual lounge around, eat out every meal and of course you guessed it SHOPPING.  No major purchases, just lots of window shopping and a whole day at Ikea - LOVE THAT STORE!

Olivia, Roger and Aunt Teresa went to visit Pa-Paw in Tennessee.  Here is a picture of Olivia and Aunt Teresa right before boarding the plane.

And here she is with Pa-Paw and Cracker Barrel.  Boy did they make fast friends!

After dinner, the Tennessee family surprised Olivia with a birthday cake!  Yes, this would be the second time her birthday was celebrated.  Lucky girl!

Party Time!!!

Yummy green frosting!

Being that she was on vacation, she went a little crazy with the snacks.  Here she is eating an entire bag of popcorn!!!!!!!  Livi and I LOVE popcorn!!!!!

And here she is after the bag of popcorn sleeping with the new doll that Pa-paw and Bobbie gave her.  I'm sure you are dying to know the doll's name, right?  Well, it's Laverne.  Yes, that's right. Laverne.  Roger and Teresa went through about a million names when she finally settled on Laverne.  Hey, she's original.  And yes, she is still calling her Laverne although it sounds more like "Yaverne".

Here she is the next day with Cousin Rena!

And here she is with Uncle Dale.

And here she is headed back to Dallas.  I must admit, Juliana and I REALLY missed that girl.  The house is definitely quiet without her! 

7. Spirit Horse is open for business!  Another great thing about spring and better weather is that Spirit Horse is open again.  They close for the winter and the summer and are open in fall and spring.  Here she is with Daddy, Marisa and her instructor Meagan and of course Pocket her pony.  She has made so much progress since she started over a year ago and each time we go she gets even better!

8. We got a head start on Easter.  Since we are having the golf tournament on Easter weekend we, for once, thought ahead and decided to dye and fill our Easter Egg Shells (Cascarones!)  We took advantage while Omi was with us and died six 18 packs of egg shells.  Thank you Monteleone's for the donation of egg shells.

9. Livi celebrates her birthday for a 3rd time!  I guess since she did turn three it is befitting that she celebrated 3 times.  Most of the out of town family came in for the celebration and it was a great time.  Mommy, Daddy and Juju got her a sand and water table and to say she loved it would be an understatement.  She stayed out for more than 3 hours playing on that table.  Being the very responsible parents (NOT!) we failed to put on any sunscreen despite the fact that she was in direct sunlight.  Good thing she has my skin tone, thankfully we only ended up with just some rosy cheeks!

 This was her AMAZINGLY delicious cake that Nino Ray and Nina Julie got for her.  It was Chocolate Chip Cookie flavored cake and it rocked!

 Livi loved it too!

 Best Cake Ever!

 Mick & Ris!

 Present time!  She LOVED everything!

 Especially the dresses.  She is such a girl!

 Here is Juju hanging out with her college friend!  They are so cool!  She always has a great time with Micki:)

 I'm not sure what was so funny - they were telling secrets!

 These are the new shoes that Omi got for Juliana.  Unfortunately they didn't quite fit well with her AFO's so guess who inherited another pair of shoes?

10. Our new backyard residents - The Ducks!  These two little mallards decided to take a dip in our pool this year.  Livi and Juliana were so excited, so of course we got the bread out and fed them.  We were thinking they would stick around awhile, but I got too close and they flew off.  Oh well, it was cute while it lasted.

11. Breaking up is hard to do!  We had been seeing the same neurologist for about two years now.  Some things happened and unfortunately we came to the mutual decision that maybe we needed to find another neurologist.  I say unfortunately because we had been with this doctor for so long, she had been with Juliana through her regression, had seen her literally come alive once we got her seizures more under control, and the thought of starting over with someone just sounded exhausting to me.  But I'm happy to announce that we have found a new doctor!  He is very knowledgeable, he's had a few Rett patients, we seem to be on the right track and best of all Juliana liked him.  The amazing thing about this girl is her amazing charm.  And any time we meet someone new (like a new doctor, therapist etc) she pours on the charm so that you have no choice but to love her and want to help.  So here's to our new doctor - pray that he's with us for a long time!

12.  Juliana's ARD.  We had Juliana's ARD meeting (for you non-school people it's basically the meeting we have each year to make a plan of what will happen next year.  We meet with teachers, therapist, diagnosticians and parents to set goals, etc) and it went amazingly well.  Not that I had any doubts.  Her school is awesome for two major reasons: 1. They BELIEVE in my girl!  They know she is smart and capable and are all just working to find ways to reach her.  2. Wonderful staff that genuinely cares for her! We are truly blessed to have her there.  Clifton Early Childhood Staff - YOU ROCK!!!!!!!!!

13. Dress Up 2 Cure Day and Our Children's House!  Dress Up 2 Cure Day comes every April 1st in an effort to raise money and awareness for Rett Syndrome.  This year in addition to dressing crazy on that day, they also planted a Garden of Hope.  Thank you OCH!  You ROCK your Socks off!

Here is Juliana with her best friend D.  D. loves Juliana so much and is always around her.  I love to see her smiling like that!

14. Music Therapy - We are starting Music Therapy on Fridays for Juliana.  The great thing about it is that he comes to our house, so Liv will also get to participate a bit.  We are hoping to incorporate some music into her other therapy as well.  So, wish us luck - I think Juliana will love it - Livi too!
15. And last, but not least. . . . . . . Juliana is BACK!!!!!!!!  After several months of seizures and changing her meds, I really felt like we were taking steps back.  Juliana was always tired and just "not present".  Well we finally weaned her off two meds and I am thrilled that I am seeing my girl again.  Last night when I was putting on pajamas she was being so silly and her and I burst into a very contagious giggle.  As we were laughing I realized, it sounded extra sweet because I hadn't heard it in so long.  Her laughter is medicine for your soul.  So, right now I am feeling GREAT.  I feel like I have a renewed sense of hope.  Like we CAN do this and we WILL find a cure!  We have learned through this all, that there will always be ups and downs.  We just have to always remember that whenever we are down - things will always turn up again!