Another Huge Thanks to AMBUCS!

Just wanted to send another big thank you to the wonderful people from the Irving Chapter of AMBUCS. Mr. Silver returned to oblige our younger daughter Olivia with a tandem seat! Juliana will have to work extra hard to pedal for them both (but I don't think she minds.)

Let's take this bad boy out for a spin!

Thank you so much AMBUCS! You have made my little girls very happy! (Livi is happy. . . don't judge by her face, she's just used to being in the driver's seat.)

Our Little Getaway!

Let me just start by saying a huge THANK YOU to everyone that made this very necessary mental holiday possible for us; Mr. & Mrs. West for watching the girls, Barb & Pacheco's for taxiing the girls everywhere and taking care of our beloved Casey! After having sick girls and a sick husband for slightly over a month, I was more than ready for a little break. Luckily Roger had to go on business to Rhode Island, so I was happy to tag along. We hadn't been back to Rhode Island in over 11 years! I was a little nervous that I might not know my way around or that I might get lost, but it's amazing how your mind works. It was as if we had never left. A few things had changed here and there, but for the most part it was just as I had remembered it. It was a really sentimental time for me because this is where Roger and I met and basically grew up. So, without further ado, let me give you our little tour of the city we love. . . .

This is the sign you see as you enter Federal Hill. This is the Italian section of town and where Roger and I called home for several years. You will never find an area with more charm that this. It is wonderful mix of history, tradition and a new generation of modern trendiness. We loved it then and we love it now!

This is DePasquale Square in Federal Hill. Here you will find some of the best Italian restaurants in the city as well great live music in the evenings.

This is DePasquale Square at night!

These are our new friends Tim & Ann and Holly. We had such a fun time - Can't wait to come back!

Another thing I love about Rhode Island is that you have a Dunkin Donuts on every corner. Love my Iced Coffee!

This is Riccotti's where you can get the BEST grinder in Rhode Island. I had been craving this sandwich for several years. I had actually wondered if they would send one to me fed ex. After all the wait, let me tell you that it was everything I remembered and more!

And this my friends is the Riccotti's grinder. I know that at first glance it might look like any other sandwich. But don't be fooled. Riccotti's has some kind of special pepper sauce, then top that with some special oil and vinegar, the best italian meats and cheeses and fresh bread and you're in heaven. After a few bites, the oil and vinegar begins to seep into the bread for a semi-soggy spectacular treat. It can be a little messy, but well worth it.Don't take my word for it, try it yourself!

This is the house on Brayton Street that we lived at for two years. We lived on the third floor. Our landlord was a very sweet lady from Italy that lived on the first floor, and we have many wonderful memories of having coffee and cake with her or her made from scratch eggplant Parmesan. I miss her. Anyway, the house was built in the late 1800's and the original owner of the house was John Brayton - hence the street name!

Side view of our house on Brayton Street

This is Waterplace Park, which by the way is where Mr. Roger Brooks proposed to me on those very steps. I love this park and the amazing view of the city!

This is us at our other favorite park called Prospect Park. It also offers a great view of Downtown Providence.

Our last night there we got to stay with our dear friend Jenn (Or Jenny-Beth as we like to call her in Dallas). This is a picture of her in her most amazing bathroom that I so love. Hers is an historic house and I just fell in love with all the charm and character it has to offer.

This was our last night. We made it back to DePasquale Square - great time with old friends. Thanks Bob & Jenn - We had a great time!

Our last day in the Ocean state, we had to make it out to the beach. We drove to Newport.

This was my best "I Heart RI".

After a great day at the beach, sadly, this is us leaving as we cross over the Newport Bridge. It was an amazing time, but it was definitely time to get back to our girls. As much fun that we had, they were never far from our thoughts and I can't wait to come back here with them next time!

What a Weekend!

Wow! After being stuck in my house for close to a month because everyone but me was sick, we finally came out to see the light of day for a very eventful weekend.

Here is Olivia showing off the dress that she stole from Juliana. This was supposed to be Juliana's dress for this special weekend, and after ripping off the tags, we realized that she had gotten just touch to chunky for the zipper to go all the way up. Don't get me wrong, I'm thrilled that she's packing on the pounds! So guess who reaped the benefit. . .

We started off with our little Marisa's graduation. You are awesome Risa and we are so proud of you. I met Marisa when she was just a tiny middle schooler and am proud to say we have watched her grow into this amazing lady. The Brooks Babes adore her and so do we! I know you will do something amazing in this life and we are honored to have you in our life! Go RISA!!!

Then from the graduation party we were off to meet our very good friends Dee and Amber for dinner. It just so happened to be Ms. Amber's birthday and we were so glad we got the chance to celebrate it with her! Happy Birthday Amber!

Oh oh. Looks like Olivia is ready for nap time!

A Huge Thank You To Ambucs!

What a week! In addition to the many generous donations to GirlPower2Cure this week (thanks so much to all of you!) we got a phone call on Friday from AMBUCS! AMBUCS is a non-profit organization dedicated to creating mobility and independence for people with disabilities. They do this through various forms of community service, scholarships and with the AmTryke! So Mr. Bob Silver, from the local Irving Chapter called on Friday to let us know that Juliana's AmTryke was ready. He delivered it this afternoon and I think Juliana's face will speak for itself. We had talked to her about it for days, and let me tell you when Mr. Silver arrived, she knew exactly what was going on!

Here she is putting on the helmet:

Here we are getting her all buckled up!

Ready or not, here she comes!

Here is Mr. Silver giving Juliana her first test drive, unfortunately it had to be indoors because the rain never stopped all day!Here is Mr. Silver pointing out all the great features of her new ride!

I love my new AmTryke! I am so excited!

Here is Livi, trying to butter up Mr. Silver for a Tryke of her own. Don't worry Livi, Mr. Silver is going to get you a tandem seat to ride with your sister.

Thank you so much Mr. Silver from the Irving Chapter of AMBUCS! Look how happy you have made our beautiful little girl!

What an unbelievable week! We've been blessed by so many and words cannot express how deeply thankful we are to each and everyone of our friends and family.

Please take some time and visit the AMBUCS website and discover all the wonderful things this great organization does for so many communities. We encourage you if you can to make a donation to this worthy cause.

http://www.ambucs.com/

Stay tuned for more great things to come!

Juliana's Journey

Hello Everyone! We are so proud to be sharing with you our new journey. For those of you that know or for those of you that we have not reached yet, our beautiful Juliana was diagnosed back on December 8, 2008, with a very rare neurological condition called Rett Syndrome. It is a condition that has unjustly robbed her ability to walk, talk, and even do some of the most basic functions that many of us take for granted. We have remained hopeful that with therapy, Juliana may gain the ability to walk; however, speech is a function that most Rett girls never develop.

Over these past several months of learning and acceptance, we’ve finally decided that it’s time to move beyond mourning the life she may never have and better yet, celebrate the life we know she can. We have been comforted by the incredible network of Rett Syndrome families we’ve met and this is why we are writing to you today.

We all know that there is incredible strength and power in numbers. We stopped and realized one day that we have such an awesome network of friends and family; a network so strong that we hope will be encouraged and inspired by our beautiful little girl to help us do something about this incredibly debilitating condition. Just recently, we’ve partnered with the organization GirlPower2Cure. Girl Power 2 Cure is a non-profit organization dedicated to raising funds for research, for treatments and a cure for Rett Syndrome.

Here’s what we would like to accomplish:
1. Raise an overwhelming awareness about what Rett Syndrome is and where the research is headed
2. Fundraise for research in order to someday realize our dream of seeing a cure for our beautiful Juliana
Because Rett Syndrome is so widely unknown, obtaining public funding for ongoing research has been difficult and unsuccessful

We’d like to ask each and every one of you to do just that- help us raise awareness and funding. We want to create a campaign by asking you to share this email with your extended network of friends, family, and beyond. Share the link at the bottom of this email and say, “I know someone with Rett Syndrome and here is how you can help!”

The link below will take you directly to Juliana’s very own web page at GirlPower2Cure.com. Please take a few minutes and explore the site, learn about Rett Syndrome, and donate what you can. Please understand, every penny counts and truly will be counted because 100% of all donations go to fund Rett Syndrome research that we so desperately need. In fact, take a moment and read about the incredible work that has been done to reverse the effects of Rett in mice.

http://www.girlpower2cure.org/juliana

Well, again, thanks so much for taking a moment out of your day to read this and hopefully be inspired to take action. We are so truly blessed and must remind ourselves daily that God has entrusted Juliana’s care to us and for that, we must remain humbled and thankful. As you can imagine, we have a pretty challenging journey ahead of us, but all in all, your prayers and thoughts have pulled us through to another day. There’s a great quote that we love that reads: Powerful dreams inspire powerful actions. Please help us realize our dream and take action today. We would love to hear how you’re helping lead the charge to finding a cure for Rett Syndrome!

God bless and go GirlPower2Cure!

Sincerely,

Roger, Kristy, Juliana, & Olivia Brooks

Prayers Needed!!!!!!!

Hello all - Just wanted to fill you in! We need your prayers! We just spoke to Juliana's neurologist, who in turn just spoke to her specialist in Houston, and we have decided to try to take Juliana off of her seizure medicine. I know this sounds so scary to me too. We are going to ween her off slowly and God willing, if we don't see any problems or regressions, Juliana will be off the meds, hopefully for good! Please keep Juliana in your prayers as we go down this new journey!