Here is the Children's Discovery Center Crew - all with their Wiener-Whistles!
Friday, February 24, 2012
Wienermobile in Irving
Yes, folks, we are that cool! On Friday, February 24th the Wienermobile was in Irving, TX and all about helping raise awareness and funds for Girl Power 2 Cure! Sad to say I was not there because I was en route to Florida for my big run. Thanks so much for all of our Team that really helped rock this event out. And thanks to Yoli and the Oscar Mayer Team for coming out and supporting a great cause!
Here is the Children's Discovery Center Crew - all with their Wiener-Whistles!
Yoli and the Family
Thanks so much Yoli and Reese for rocking your hot dogs off!
Juju getting her Wienermobile sticker on!
Livi's wearing hers close to her heart! (She REALLY does LOVE Oscar Mayer Hot Dogs! It was a dream come true for her!)
Next getting her GP2C Flower Tattoo!
All set!
So many people came out that night! So nice to see so many friends!
Livi taking a break in the wiener
And this is most of the amazing team that made this night possible! From the bottom of my heart - THANK YOU, WE LOVE YOU!
Here is the Children's Discovery Center Crew - all with their Wiener-Whistles!
Monday, February 20, 2012
Dallas Thrive Magazine
Just had to brag a bit about our recent magazine cover! Check out the link below for the full story!
http://www.pageturnpro.com/Dallas-Child-Magazine/36297-Thrive-Spring-2012/index.html#1
or read below:
Kristy Brooks
By Christi B. Steckel
If you’re curious what hope looks like, just look into the eyes of Juliana Brooks. She’s a 5-year-old girl who’s smart and beautiful. She has so much to say but can’t say it … yet. After developing normally for the first year of her life, she was diagnosed at 2 ½ with Rett Syndrome, a neurological disorder typically found in girls that affects her ability to walk and talk. She and her family – mom Kristy, dad Roger and sister Olivia, 3 – live in Irving, enjoying each day as they await a cure.
How was Juliana diagnosed? When she was born, everything was perfect. She was always happy. At nine months she was babbling and crawling. Life was great. She started to miss a few milestones, but the pediatrician told us it’s OK – some children are slower to develop. We waited a few months longer, and when she was a year old, it felt like overnight she stopped talking, stopped crawling. We went to a neurologist and got a very discouraging report. We asked what we could expect, and he said on a good note, she may be able to sack groceries; on a bad note, you’ll be taking care of her for the rest of your lives. We were sent to a geneticist to test for Rett Syndrome, and when we got the positive results we were just shocked. The ground went out from beneath us. We went through a depressive state for a while, but that is when we found Girl Power 2 Cure. We have a lot to be hopeful for; they’ve been able to reverse this condition in mice, so a cure is possible. She has a local neurologist and also works with Dr. Sasha Djukic, the director of the Rett Syndrome Center at The Children’s Hospital at Montefiore in New York. Meeting with her changed our lives. She gave us new tools for communication. We were really at a loss for how to communicate with her, and she introduced us to the Eye Gaze computer that Juliana controls with her eyes to speak.
What is your involvement with Girl Power 2 Cure? Girl Power 2 Cure (girlpower2cure.org) was our savior at a time when we were really down and uncertain with what to do. They are all going through the same thing we are. Roger serves as the chairman of the board, and I serve on the mom advisory board. The mission of Girl Power is raising awareness and funds for Rett Syndrome research. Our big fundraiser is a golf tournament on April 21 at the Indian Creek Golf Club in Carrollton.
Hardest part of the journey? Initially looking at what the future was going to look like was very, very difficult. We had to learn to look at the progress she makes. Now she’s thriving and she’s 5, but it’s really hard because she’s starting to understand her limitations. She’s a typical 5-year-old girl, except her body doesn’t do what she wants it to do.
Proud mom moment? I got a note from Juliana’s teacher that said, “Everything I asked Juliana to do, she said no. She refused to participate.” I put on my serious face and told Juliana that is not OK – we’re going to look on your computer and find “I’m sorry,” and when you get to school tomorrow, you say you’re sorry to your teacher, and she said yes. So I wrote in her notebook to her teacher, “When you open Juliana’s computer, she has something to say to you.” So her teacher wrote back, “I turned on her computer, but I was really confused because all she kept saying was, ‘I was just kidding.’” That little stinker didn’t want to say her sorry. We were excited she did something a typical 5-year-old would do.
What is her relationship like with her little sister? It’s beautiful. Olivia sees nothing wrong with her. Juliana is her big sister, and she wants to do everything Juliana does. It’s still difficult when people ask what’s wrong, and it breaks your heart to have to explain every time. One morning, one of Olivia’s friends asked, “Well, if she’s 5, why doesn’t she talk?” I immediately froze and thought, what do I say, what do I say? And Olivia, without missing a beat, said, “Yes, she does talk. If you ask questions like, ‘Juliana, do you want juice?’ and if she says yes, she turns her face like this, and if she says no, she goes like this, and she has a computer and can pick all kinds of things to say. She can talk.” I thought, this 3-year-old child explained it so easily. I’ve stolen her answer several times when people ask.
How do you help Olivia understand her sister’s condition? We haven’t really had to explain it. She’s grown up with her. She sees the things we do for her, and she wants to do the same. If we go outside and I put their juices out, she gets Juliana her juice first. She’s very helpful and knows no different.
What is Juliana’s personality like? She is a fighter. She never complains; she’s very patient. She’s hilarious – she can make you laugh, she has the most contagious giggle.
I can tell you and Roger are a great team. Talk about how your marriage helps you through this challenge. I don’t know that I could do it without him. We complement each other. Juliana loves her daddy; she’s a daddy’s girl. It’s a four-way partnership. Everyone in this family does their share, and it’s not a job to us.
One thing you’re thankful for … I’m very grateful for her doctors and the people conducting this amazing research to find a cure. This condition may very well be the first neurological condition that is completely curable and reversible. The wonderful thing is, her brain is completely intact, it’s not degenerative and she’s not getting worse, so whether this cure comes tomorrow or in five years, she’s going to be cured.
or read below:
Kristy Brooks
If you’re curious what hope looks like, just look into the eyes of Juliana Brooks. She’s a 5-year-old girl who’s smart and beautiful. She has so much to say but can’t say it … yet. After developing normally for the first year of her life, she was diagnosed at 2 ½ with Rett Syndrome, a neurological disorder typically found in girls that affects her ability to walk and talk. She and her family – mom Kristy, dad Roger and sister Olivia, 3 – live in Irving, enjoying each day as they await a cure.
How was Juliana diagnosed? When she was born, everything was perfect. She was always happy. At nine months she was babbling and crawling. Life was great. She started to miss a few milestones, but the pediatrician told us it’s OK – some children are slower to develop. We waited a few months longer, and when she was a year old, it felt like overnight she stopped talking, stopped crawling. We went to a neurologist and got a very discouraging report. We asked what we could expect, and he said on a good note, she may be able to sack groceries; on a bad note, you’ll be taking care of her for the rest of your lives. We were sent to a geneticist to test for Rett Syndrome, and when we got the positive results we were just shocked. The ground went out from beneath us. We went through a depressive state for a while, but that is when we found Girl Power 2 Cure. We have a lot to be hopeful for; they’ve been able to reverse this condition in mice, so a cure is possible. She has a local neurologist and also works with Dr. Sasha Djukic, the director of the Rett Syndrome Center at The Children’s Hospital at Montefiore in New York. Meeting with her changed our lives. She gave us new tools for communication. We were really at a loss for how to communicate with her, and she introduced us to the Eye Gaze computer that Juliana controls with her eyes to speak.
What is your involvement with Girl Power 2 Cure? Girl Power 2 Cure (girlpower2cure.org) was our savior at a time when we were really down and uncertain with what to do. They are all going through the same thing we are. Roger serves as the chairman of the board, and I serve on the mom advisory board. The mission of Girl Power is raising awareness and funds for Rett Syndrome research. Our big fundraiser is a golf tournament on April 21 at the Indian Creek Golf Club in Carrollton.
Hardest part of the journey? Initially looking at what the future was going to look like was very, very difficult. We had to learn to look at the progress she makes. Now she’s thriving and she’s 5, but it’s really hard because she’s starting to understand her limitations. She’s a typical 5-year-old girl, except her body doesn’t do what she wants it to do.
Proud mom moment? I got a note from Juliana’s teacher that said, “Everything I asked Juliana to do, she said no. She refused to participate.” I put on my serious face and told Juliana that is not OK – we’re going to look on your computer and find “I’m sorry,” and when you get to school tomorrow, you say you’re sorry to your teacher, and she said yes. So I wrote in her notebook to her teacher, “When you open Juliana’s computer, she has something to say to you.” So her teacher wrote back, “I turned on her computer, but I was really confused because all she kept saying was, ‘I was just kidding.’” That little stinker didn’t want to say her sorry. We were excited she did something a typical 5-year-old would do.
What is her relationship like with her little sister? It’s beautiful. Olivia sees nothing wrong with her. Juliana is her big sister, and she wants to do everything Juliana does. It’s still difficult when people ask what’s wrong, and it breaks your heart to have to explain every time. One morning, one of Olivia’s friends asked, “Well, if she’s 5, why doesn’t she talk?” I immediately froze and thought, what do I say, what do I say? And Olivia, without missing a beat, said, “Yes, she does talk. If you ask questions like, ‘Juliana, do you want juice?’ and if she says yes, she turns her face like this, and if she says no, she goes like this, and she has a computer and can pick all kinds of things to say. She can talk.” I thought, this 3-year-old child explained it so easily. I’ve stolen her answer several times when people ask.
How do you help Olivia understand her sister’s condition? We haven’t really had to explain it. She’s grown up with her. She sees the things we do for her, and she wants to do the same. If we go outside and I put their juices out, she gets Juliana her juice first. She’s very helpful and knows no different.
What is Juliana’s personality like? She is a fighter. She never complains; she’s very patient. She’s hilarious – she can make you laugh, she has the most contagious giggle.
I can tell you and Roger are a great team. Talk about how your marriage helps you through this challenge. I don’t know that I could do it without him. We complement each other. Juliana loves her daddy; she’s a daddy’s girl. It’s a four-way partnership. Everyone in this family does their share, and it’s not a job to us.
One thing you’re thankful for … I’m very grateful for her doctors and the people conducting this amazing research to find a cure. This condition may very well be the first neurological condition that is completely curable and reversible. The wonderful thing is, her brain is completely intact, it’s not degenerative and she’s not getting worse, so whether this cure comes tomorrow or in five years, she’s going to be cured.
Wienermobile is Coming to Irving
Yes friends, it's true. The Wienermobile is coming to Irving, TX! And better than that. . . . . . . . . it's coming as a fundraiser for Rett Syndrome. So if you will be in the area this Friday, head to the Irving Art Center and have a yummy Oscar Meyer Hot Dog!
Saturday, February 18, 2012
Olivia's Birthday Take 1 - The Kid Party
So, let's start off with a little known fact. . . . I don't enjoy having a million kids in my home. I know shocking, right. I know, for a teacher, this shouldn't bother me, but it does. I'm totally down with having 20 kids in class, just not in my play room. So for the past several years we have had Olivia's party at a really cool park in Irving. The problem with this, as you may know, is that the weather in North Texas changes drastically in winter and there is no way of predicting it. The first year we had it there it was FREEZING! Last year was pretty cold but super windy. So as you can see, regardless of the weather, we have always just bundled up the kids had it at the park, because I would rather freeze for a few hours than have a houseful of munchkins - is that wrong of me? So this year, the plan remained and we got ready for another park party. It was looking really promising since the weekend before it had been sunny and 75 degrees. Awesome right? Not in North Texas. On Saturday, February 18 it was 40 degrees and raining all day! How is this possible. So in a last minute decision, we knew we had to move the party to Casa Brooks. Thank God I had Marisa there to help. We "cleaned" up the playroom (and by clean up, I mean took out about 95% of the toys, or as Roger told me "I sucked the fun out of the room") and got it ready for the party. Apparently I left some fun in there because we had no complaints:)
Who is. . . .
A person nice and sweet,
Someone who you might meet,
Someone who came to your Pumpkin Party.
Who is it?
Kolton
Friday, February 3, 2012
Friday is the Music Day!
Juliana has been taking music therapy classes from Che Ho for over a year now and we just love him. He plays every instrument you can think of and he makes up his own songs. For example there is the "Friday is the music day" song and the "hello, how are you" song, the "Bye, Bye, Bye" song and of course you can't forget the "Which color will she choose" song. He is awesome. I have to be honest, music class like all other things related to Rett and Juliana are shall we say not consistent. Some days are awesome - she's awake, alert, responsive. And other times, she literally falls asleep as she hears Che Ho come through the front door and there is NO waking her up.
This day, however was awesome! Pardon the blur, but it was an action shot. She was actually playing the drum!
Love this face!
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