I'm a princess

I am a princess JUST like the ones on my nightgown!

Time with dad

I went on another run with dad. I must have fallen asleep because when I woke up I was sleeping in the dining room back at home!

My first "real" haircut

Today mommy and daddy took me to get my haircut. I went to the same salon my mommy goes to, I am such a big girl! Corby is so cool! Don't worry I know you all love my hair - it was just a trim to straighten out my bangs and trim off the ends. I am still just as cute as ever........Thanks Corby! You're the best!!!

The future in communication?

I know I mentioned all the depressing Rettnett emails. Today though I read a very interesting one that linked to an article! Here is part of it:

•Speaking your "mind."

It is quite literally mind-boggling. Twenty-four-year-old entrepreneur Michael Callahan was not visibly speaking. But you could listen to his "speech" through remarkable emerging technology called the Audeo. Using specialized sensors, Audeo translates neurological signals from the brain into speech. Callahan describes the process as a "step above thinking, and a step below speaking." The first commercial products, about a year away and likely priced around $8,000, will be developed for people with severe speech disabilities. But the technology can eventually be used for such mainstream purposes as video games. Callahan's Champaign, Ill.-based start-up is called Ambient.

Click here to view the company's website. Or just watch this video clip!!

AMAZING!

It was presented at a Demo in SanDiego along with many other tech "gadgets." You can read the entire article here. I have to admit this sounds amazing. Hopefully more to come. I can see this having a huge impact in our Rett lives. You might see this listed on my "wish list" soon! We'll see.....

Nothing Cuter

There is nothing cuter that a girl and her carebear!

God knew I needed a "pick me up"

"Ma" or "Mu"
Either one....music to my ears.
YES.....Brooklyn said mom. At least I think she did. (So did her therapist so it is not just me.) I am officially going on the record today that I believe she said it! I have been in a funk with the insurance crap, and all the depressing emails I have been reading on Rettnet (only Rett moms understand how horribly depressing those can be.) Anyway....I REALLY needed some encouragement and I GOT IT!!
Thanks Brooklyn. I love you.

You have to be kidding me

Remember this post about my insurance? You know....where I paid over $1,000 out of my pocket and then was told the claim was filed wrong and I probably should not have had to pay it all. Well I never did get my promised (within 15 days) response. So.....yep, I called back. This time I asked to be sent straight to the "rapid response" line. After 20 minutes you guessed it, she can't process my request. She needs to send it on to their "expedited response" team. "Amy" PROMISED it would be processed in 48-72 hours and a letter would be mailed to me explaining the coverage along with "hopefully" a refund of a portion of what I paid............I am not holding my breath.

Words from another Rett mom

There are many blogs that I check regularly and Grace's is one of those. Tonight my heart was touched by the words I read from her mother. I want to share those words with all of you! She had a two hour phone call with another Rett mom (probably like my calls to Bridget!) Here is what she says...

"Kathy believes that her daughter was once an angel in heaven and God was passing out “assignments” and her daughter bravely volunteered to accept life on earth with Rett Syndrome understanding what a tremendous job it would be but recognizing how important her life’s work would be to others. God warned her that it would be a very hard life, filled with suffering and pain but she only insisted that she could do it and God promised her that at the end of her difficult journey He would come and get her and reward her with eternal peace and happiness.

I knew instantly that this was also true for Grace as many people will testify that from the moment she was born, she had a look in her eyes- a “wisdom” many would say. She knew and continues to know so much more than we know. She knows what matters in life and where we are all ultimately headed.

Thank God I have Grace to keep me focused on what matters in life and in love. After absorbing all my thoughts, I began to admire Grace and recognize her courage and fortitude to keep going. She is not a genetic mistake. She is a beautiful creature preserved from the dirty waters of this world that we all drink from. Grace is knowledgeable in goodness and love and she is constantly in the company of angels as I’m sure God promised her she would be. I began to feel so inadequate compared to her and her strength.

As Kathy said, Grace’s role (job) in life is as important if not more important than many esteemed professionals who’s accomplishments are perpetually recognized in a spotlight. Every life has a purpose. As I further wondered why Grace suffers, the answer slowly became clear as I realized how her suffering and pain brings so many many people to God on her behalf to ask for peace and healing for Grace. Grace’s pain calls us to present ourselves before God and look deeper into our hearts and our own lives and also to look more closely at our own suffering. Of her many gifts, one is certainly perspective of what matters in life and what we need to be thankful for each day. Grace is stronger than I ever realized. She has to be to live her life. I will not allow myself to grow weary thanks to Grace and I will persevere with her as my guide.

As Kathy encouraged me, on the days when I am tired and discouraged and uncertain about having enough strength to take the next step, she said to turn around and look how far I’ve come with Grace. I have never felt prouder to be Grace’s mother. Having five children, us mothers aren’t supposed to have favorites, but my children all recognize as I do, how deeply carved into my soul Grace really is. She is in every fiber of my being and she fills me with incredible love and strength every day. That is no mistake. Grace is a gift and thanks to Kathy, I will spend the rest of my life thanking God for blessing me and my family with her."

As I sat reading her words over and over I found myself putting Brooklyn's name in where Grace's is. I believe that anyone that has been around Brooklyn for any amount of time feels the same way I do; she is nothing short of amazing!! I pray she continues to touch my life and many others for years to come. I remember when she was born thinking I now know what true pure love is. I think it is safe to say many people will learn that same love from her.

Hanging out in the hotel

This weekend I got to spend some extra time with my Grammy and Aunt Cathy in the hotel, it was so much fun! Aunt Cathy brought me some really yummy cake....you can see some crumbs on my chin in this picture!

Mommy's Angel

I took this picture off of my friend Kimberly's family blog (I hope you do not mind!!) I loved it so much I wanted to share it with everyone.




I love mommy/daughter pictures! I was SO PROUD of her on Saturday. She did so well even in the horrible heat!

She is my little angel!

Thank you!!

Wow.....
Words can not express what our family experienced in Cincinnati at the Rett Syndrome Strollathon this past weekend. (But I am going to try)

We ended up with 40 TEAM BUTLER members! That is TRULY amazing to me. Our little girl was diagnosed just 4 months ago this weekend and in that short of time we put together one of the largest teams there!

It shows me how LOVED Brooklyn (and our entire family) is! We had family and friends join us from Angola IN, Cleveland OH, Indianapolis IN, Louisville KY, Fort Wayne IN, Columbus OH, Lexington KY, and of course our local Cincinnati OH buddies!!

As I mentioned, this weekend marked 4 months exactly since our diagnosis of Rett Syndrome. I say "our" diagnosis because it truly is a date that changed our lives forever. I know most of you follow this blog daily and have from the beginning. It has become a journal of our life with Rett Syndrome. You have been with me through the good days and bad days. (And many days that I really have nothing to much to say at all! I do always have cute pictures of Brooklyn though!)

I want to take a moment to thank ALL OF YOU that walked for Brooklyn in Cincinnati this weekend. (TEAM BUTLER was amazing!!) You have NO IDEA what it meant to me and Charlie (and Brooklyn I'm sure!) It took everything inside me to hold it together ~ I was overwhelmed with so many emotions on Saturday. The love and support was AWESOME! I do hate that we could not spend much one on one time with each of you but I hope you ALL know how much it mean that you were there for us.....for Brooklyn.

Also, thank you to all of you who donated money to one of our many team members. The money from our team and the 19 other girl's teams raised over $250,000! That is unbelievable to me! It is that kind of support that gives me great hope for a cure!

So keep praying for all the Rett Angels out there and educating people in your lives about Rett Syndrome.....we ARE making a difference!

Rett Syndrome Strollathon

TEAM BUTLER The Leckrone Family

The 20 Rett Girls in attendance.
My favorite boys: Jackson and Jordan.
Kisses from Sam Leckrone (my first crush!)
Members of TEAM BUTLER
Emily, me and Brandon
Team Butler at the halfway point, (KY skyline in the background.)
Amy, me and Melyssa
Josh, Jordan, Aunt Kristin and Jackson
Whew....I was one hot little girl after that walk in the HEAT!!!
What a GREAT strollathon! Thank you everyone who came to walk on MY team!! You are the Best!!! Lets do it again next year!!

Back to "the Nati"

The Butler family will be hitting the road after lunch today to head to Cincinnati for the big Strollathon! Unfortunately this means a few days without a blog. I apologize to those who check faithfully everyday! I promise to post a GREAT one about our exciting weekend when we get back....until then.....

Strollahon Update (for those TEAM BUTLER members who do not read their email)

Team Butler:
The BIG day is almost here and we are ALL so excited in the Butler household. Well….Brooklyn doesn’t know what in the world she is getting herself into with all you crazy friends and family we have joining us! But we can’t wait! I have a few last minute reminders for everyone:

1.) “Show me the money” – I know you ALL have done a great job raising money for the strollathon so PLEASE remember to bring it with you! If people gave you cash make sure to get their address. (checks are great – the address is already their for us!) The cash I received; I paper clipped it and put a sticky note on it with their address, that seemed to work just fine.

2.) Registration – Everyone needs to complete the Strollathon Check In form. Bring those along with you as well (it is attached to your envelope so you should not have lost it) If you are bringing extra people with you do not panic, they will have copies of the form there for us to complete at the registration table. The more the merrier!

3.) Wardrobe - I will have everyone’s t-shirts for them there. I can’t wait to see all of “TEAM BUTLER” in their shirts!! I ordered extra in each size so if more people join us that is GREAT! (I know many of you have asked me how much they are – my mom and dad bought them for everyone so….FREE!! Consider it a thank you gift for your hard work!)

4.) Weather – I checked it and it looks good..….warm but good!
Sunny and Hi of 87 on Saturday!!!

5.) DIRECTIONS:
http://cincinnati.citysearch.com/profile/map/8154453/cincinnati_oh/bicentennial_commons_sawyer_point.html
Or we can all meet in the lobby and head over together!
Also, anyone who is not staying there can also click the above link and type in where you ARE coming from and get directions.

6.) Parking- RSRF has reserved the main parking lot for us – it should not be an issue!

7.) If you need ANYTHING: Call our cell phones!! (try mine first for the most accurate information.)

The Registration starts at 10:00 with the strollathon beginning at 11:00 at the skating rink. Since we have “team members” coming from all over the city let’s plan on being there at 10:00 to give us an hour before the walk to hand out the shirts and of course get a TEAM photo!!! Ummm…Let’s meet in front of the outdoor pavilion – there is a HUGE grassy area there. When you come through the main entrance – go straight and look for us. If you have trouble – call my cell!

You all have NO idea how much it means to me that you are joining us in Cincinnati for the Strollathon. It is weird to think that I lived in Cincinnati for almost 8 years and never even knew that the Rett Syndrome Research Foundation was located there or that Rett Syndrome even existed! Times have changed for me since then and our lives are a bit different now. However; the one thing that is the same is YOU! All of you care about Brooklyn and our family and A CURE for this disease so much that you have decided to be part of our team!!! THANK YOU!! I look forward to seeing everyone on Saturday!!

Love to ALL of you,
The Butlers

Lots of Wiggly fun ahead for me!

Look at the great DVD's my Aunt Kristin and Grammy got! They found them at Big Lots for only four dollars each!

HOW COOL!!

Quality girl time

Mommy had to work Saturday morning so I got to hang out with Aunt Kristin and Grammy. We had SO MUCH fun!! I love kisses from aunt Kristin, she makes me giggle so much!
I found my NEW favorite thing, Aunt Kristin combed my hair, it felt so good I almost fell asleep!
I wanted to make sure and post a picture of grammy too! People say I look a lot like her. What do you think?

sleeping in the swing

It was so nice outside mommy let me swing (no mosquito's in sight!)

As, you can see....I fell fast asleep!

Cooler weather means...

I get to wear some new fall clothes!
Even though I have to admit, I am like most Rett girls - I still fit in most of my fall clothes from last year! Janet (my sitter) fixes the waist on almost ALL my pants! Sunday I had a 6-12 month skirt fall off of me..oops! I need the waist of my 18 months but the lenth of 24 month or 2T....grr

Caitlyn

This is a very special Rett girl; Caitlyn. Her mommy Rebecca scrapbooks and is OBVIOUSLY very good at it! I LOVED this so much I had to post it.

My mommy and Caitlyn's mommy have never met but I think they would be great friends. Be sure to check out her site.

(For those of you that don't know; Rett girls are called "silent angels" or "Rett Angels")

My "Trigger"

This title might not make sense (except to Bridget) but I think I found my "trigger." I am sure every "Rett Mom" has them....something that makes us "lose it." Actually...since Brooklyn's diagnosis is still so new I have LOTS of "triggers" (really, some days EVERYTHING makes me cry) but I think weddings might be one of those things that will always get me.

Charlie and I attended a BEAUTIFUL wedding this past weekend. It was personally touching because the bride's cousin is a very amazing special needs 15 year old gal herself. This beautiful young lady was part of the bridal party. The bride wanted her to go down the isle so that she could "know the feeling of going down the isle." Let's face it; the truth is she will never have a wedding of her own.

"Gasp....."

My little girl won't either. WOW! This was one occasion where I am SOOOOO glad it is perfectly acceptable to cry at weddings. I was happy that this young lady was having such a special evening (she even ended up on the dance floor later with the bride and groom for the Chicken Dance!!) but I was also very sad at thinking about the loss of yet another dream for Brooklyn. A dream ALL moms had for themselves and for their little girls.

Don't worry. I am not going to hang out in this pity party I am having for myself very long I just needed to get it out there......

I also want to thank Amanda and Niki that (even though they are miles away) sent me their love and support in the midst of my wallowing! They both happened to email me at a moment of weakness so I "unloaded" on them. Thanks girls!!

Trampoline Time

I had a great time....so did mommy!!

Neurologist Appointment

Brooklyn had an appointment in Fort Wayne with Dr. Khan this afternoon. We really like her! She upped Brooklyn's Keppra to 3 cc's in the morning and 3cc's at night. She wants me to stop the Benedryl at night and go back to the Zyrtec in the morning for her sinuses. For the evening she wants us to try Melatonin to help her sleep. So...we will have to wait and see. More to come I am sure! (Oh....she weighed 23 pounds 7 ounces for those of you keeping track of her weight; still holding steady - no weight loss so we are all happy!)

My evening in Fort Wayne

After my neurologist appointment mommy and I went to visit some friends in Fort Wayne, the Smiths. Here is me and mommy on their super cool trampoline.

This is Jackson, me, and Tyler watching the Wiggles. They are HUGE fans too!
Kati and me (mommy and Kati were roommates in college)

The three girls...... Kati has all boys so I think she liked our "girl time!"

Me and Spencer in our PJ's after bath time (his have THE WIGGLES on them!) Our eyes are glued on the TV ~ watching our wiggly friends!
This is my version of heaven.......they have 19 Wiggles movies. Dad....I realize now we do not own ALL the Wiggles DVD's! My Christmas list just got longer!

We had so much fun hanging out with everyone tonight. We really need to get together more often! Kati....I will see you in Cincinnati at the walk! Drew, sorry we did not get any pictures with you! (Of course your three boys look JUST like you!!)

Random pictures of my family

My Cute daddy!

another one mommy took of me sleeping

Harley hating me for the flash

one of those great "take one of ourselves" pictures

Thanks Aunt Janet!!

This book came all the way from California! My daddy's Aunt Janet knows that I love the Wiggles so she bought it for me! It even has my very own "MP3" player, kind of like daddy's IPod but it ONLY plays Wiggles songs.....I LOVE IT! It has quickly become one of my favorite books. It has also helped mom and dad memorize more songs so they can sing along!

Happy Grandparent's Day!

To all the grammy's, pappy's, nana's, grandpa's, and grandma's out there (especially MINE) HAPPY GRANDPARENT'S DAY!!!!

Jordan's "Wiggly" Birthday

My buddy Jordan turned 3 this week and he had a "Wiggles" birthday party at my aunt Kristin's house on Saturday. I had so much fun! Do you see his cake....the Wiggles are on it! Here I am with Josh, hanging out upstairs where it is a little quieter, there were TONS of kids at the party. Jordan has lots of fun cousins! I am glad I got to play with them.

Daddy's Girls

I have so many cute outfits thanks to my buddies Grace and Faith. They outgrew them and gave them to me! It was so nice of them to share with me! This is one of mommy's favorites so daddy took a picture of his two favorite girls before mommy left for work yesterday.

I love TSU volleyball!!

Last night mommy took me to the Tri-State University volleyball game. I had a blast! I got to hang out with some cool college girls too, thanks Kim and Ally for hanging out with me when you could have been in the student section. The athletic department is donating their portion of the 50/50 drawings to my team for the strollathon! (Pappy and Grammy were there too, that is Grammy holding my fan, it was HOT in there!)
Here is a picture with Kim, Ally, and me at the game. I wish Jenna did not have cheerleading practice, I wanted to meet her too!

I had to leave after the third game (it was past my bedtime) but the girls ended up battling FIVE tough games. Unfortunately, they lost in game five but I still LOVE them and will be back for more games!

Soaking up the last days of summer

What a wonderful day!
I started off at the Fort Wayne Zoo with Mommy, Daddy, Grammy, & Pappy. We had a BLAST. I got to see lots of animals and play in the petting zoo and Grammy even gave me my first taste of cotton candy, that stuff is awesome! We also rode the train which I have to say was my favorite part! We went to lunch at the Olive Garden where I ate my weight in portabella mushroom ravioli!





After mommy took a nap, we went to my buddy Brent's Birthday party. He turned six today! There were LOTS of kids there for me to play with. I even got to have cake and ice cream. Mommy said something about me never sleeping tonight with all the sugar. It is ok, I think I will since I did not nap except for in the car on the way home.



What a GREAT day!