UGH....I have no better title for this post!

I thought I would take a few minutes of my lunch to post about my recent frustration. Why do insurance companies have a "rapid response" department? Shouldn't ALL our claims be handled immediately?

Exactly how irate do I have to get with the person on the other end of the phone before they think it is a good idea to transfer me to the "rapid response" team? I guess this time me paying a unnecessary $1,000 when I did not need too (The hospital filed the claim wrong saying Brooklyn had an addiction to an illegal drug! Can you believe it?? That is quite a MISFILED claim. Then the check arriving to the company and filed wrong again (which is why I STILL have not received a refund and am now considering starting an illegal addiction myself - JUST KIDDING MOM!!!! ) justifies a transfer to that department. Hmmmm..... maybe my refund will come just in time for Christmas shopping!!!!

I do however have the ball rolling on the Medical Waiver form (which assists families with "disabled" children cover "excessive" medical costs) we will be put on the waiting list as soon as I get the paperwork from the state department, complete it and send it back - we will be immediately placed on the list. Oh yea.....the waiting list is somewhere between 3- 7 YEARS!!!!

By the way don't get me started on the joy of life now that we have an "official diagnosis" of Rett Syndrome and proving that to the "powers that be."

UGH.... I am ready for my long weekend.

Thanks Grammy!!!

Grammy got me this SUPER CUTE pink and white polka dot bean bag chair. I love it!
As you can see from this picture, I am so sweet that I continue to get eaten alive by mosquito's even though mom practically keeps me indoors 24/7. Oh well......

Back in the Gait Trainer....

I swear she had taken 3 or 4 steps during our developmental therapy session before I got my camera! I decided to post this anyway. Mainly because I am SO proud that she tries SO hard in therapy (and all day long really.) Plus, she is so cute...

Rett Syndrome Strollathon

I know there are some family and friends that are too far away and are unable to join us for the Rett Syndrome Strollathon in Cincinnati on September 22nd. Many of you have asked how you can donate and support TEAM BUTLER for this event. Simply click the logo or click here. You will be asked to choose which program. Please choose Indiana/Kentucky/Ohio Strollathon. In the comment section you will be given the opportunity to list that you would like to support Brooklyn Butler. Thanks everyone for your continued love and support of our family. This strollathon supports a GREAT cause....research for a cure!

To Janet's House We Go....

I love my trip to Janet's house every morning, mommy's singing makes me laugh. Today Jackson greeted me with a big "Hi Bwook!" and mommy got a hug and a kiss from him. That is a GREAT start to the day!

Cleveland Browns? NO....Indians!

I got these cute Cleveland Indian P.J.'s from my aunt for my birthday. They are really comfy!

Happy Birthday Josh!!

I got to hang out with Josh last night and share his ice cream cake! It was so much fun....I love Josh! I hope you had a GREAT birthday!!!!

Sleeping Beauty

So peaceful...no clapping, irregular breathing, tremors, nothing. What a blessing for her.

Me and my mommy & daddy

Seizure Update

I had someone ask me about Brooklyn's seizures today. I realize it has been awhile since I updated everyone about them. We are currently at 2 cc's of Keppra twice daily and she is doing GREAT! No seizures in quite awhile! YEAH!! Also, she is doing FABULOUS on the Miralax. I was given a bottle so I decided to give it a try. She is like a different child now that she is taking it. So....two big reasons to celebrate! Thank you for asking...sorry for the delay in the post!

P.T. Time

Thursday meant Nan came to my house to play with me (Physical Therapy.)Playing on my ball is one of my favorite times. We bounce and roll and stretch, I love it!
Nan keeps my spine stretched out too, Rett girls have some trouble with scoliosis sometimes, we work on doing our best to offset that.
Of course walking is a VERY BIG DEAL! I don't really like my walker much these days but Nan works with me on walking like this. I walked for 25 minutes with her. I really like when Nan comes to play with me!

No pot of gold!

I am not sure if you can tell from the picture but this rainbow ended right in the middle of Landis road last night. Ummmm....no gold, not even any lucky charms, just my road. It was however, a GREAT way to end the day though! BEAUTIFUL! Ok....Scott Meyers (here at TSU) told me that I must have seen the beginning of the rainbow since there was no gold......just our luck!

Strollathon Poster

I am not sure if anyone on Team Butler is interested in hanging up the "official" Strollathon poster or not but click here if you are! Next year Brooklyn will be on the poster! My new friend Jennifer and her daughter Hannah are the ones on the far right side (in the blue shirt!) She is the chair of the event this year.

Yummy......Dairy Queen

I did SO well in therapy tonight! Maybe that is why I got to go to Dairy Queen after dinner tonight! I split a twist cone with my mommy! I did get some in my mouth even though in this picture it looks like it ended up all on my face.

Pretty in Pink

Well....my mosquito bites are looking better and I slept ALL NIGHT LONG last night and mommy dressed me in head to toe pink today(my favorite!) ~ it does not get much better than this! I am off to a great start today.

(Shannon do you recognize this shirt.....thanks Smith girls for my cool princess tank top!)

Strollathon Update

Team Butler Strollathon Members:

Almost all strollathon information packets are in the mail! YEAH! If you have any questions please let me know. We are all SO excited about the strollathon here in the Butler house. Please remember to make your hotel reservations at the Holiday Inn Riverfront in Cincinnati if you have not done that!

Tomorrow we are officially one month away from the September 22nd date! The T-Shirts will be ordered THIS WEEKEND (PLEASE email me with your size if I have not heard from you yet!!)

Now it is time to raise some money towards a cure! I did get word today that our Tri-State University Athletic Department plans to support Team Butler with the proceeds of the 50/50 drawings held at the first 4 home women's volleyball games. You guys rock!!!

New to Therapy

We are starting to incorporate yes/no cards into our life. The goal here is to allow Brooklyn to "tell us" what she wants with a little less guessing on our part. Obviously red is for no and green is for yes. I am sure there will be more to come in the future on this topic! This is her first switch activated toy. For those of you not part of the "Rett World" the switch is the little purple button you see on the floor. It is hooked up to the toy and the toy is only activated when Brooklyn touches (and holds down) the switch. She is catching on to this one REAL quick. Yesterday during therapy Harley (our dog) came in and laid down on the switch - activating the toy with NO work on Brooklyn's part. I think she is going to see how she can get Harley to do that more often!
Of course I needed to throw in a picture of Brooklyn. She is wearing her new Wiggles T-shirt (thanks Aunt Kristin!) that she got at the concert. She is all smiles this morning!

New member of the fan club

It looks like another member of our family has joined the Butler family "Wiggle Fan Club!".....or maybe she just wanted to hang out with Brooklyn?

Another round of Benedryl please!

Did anyone see the size of that mosquito that just attacked me??? Seriously....I got NINE bites yesterday. How does that happen??
Mommy feels so bad - it is ok. I am a tough little girl.
Not sure why mom took my picture, I am kind of pathetic looking right now.......
I did stay in my pj's all day and cuddle with Grammy because mom had to work. I kind of enjoyed it!

Higher.....Daddy......Higher

My cousin Jackson came over for pizza tonight. After our evening walk daddy pushed us in the swings!

A mommy moment.....

I know I have been telling everyone how much Brooklyn loved the Wiggles. I thought I would SHOW you! Now, I realize that you are not supposed video at the concert but I do not think the guys would mind me filming Brooklyn. It was truly an amazing evening for me. Watching her in awe of them ~ her smiles, giggles, and squeals will keep a smile on my face for weeks to come. It was so much fun!

I do want to mention real quick that I have SO MUCH respect for "The Wiggles" they were so sweet to Brooklyn, taking time to crouch down and talk to her and listen to me rattle on about how inspiring they are for her. They have NO IDEA the joy they bring to my little girl. I am so greatful!

My AWESOME night with the WIGGLES

I was ALL smiles throughout the concert!! Here is the famous "Big Red Car"
Oops, I meant to post this one last, we were so sad when we realize the concert was over!
Mommy, me, Aunt Kristin, and Jackson.

Wiggles! Wiggles! Wiggles!
WhooHoo.....You guys ROCK!
Me and mommy rockin with the Wiggles!

This was the best night of my cute little 2 year old life!!!! Hey mom......maybe we can go again soon?

NAP TIME!!!!

After meeting the Wiggles we were all a little sleepy. We had to rest up for the big concert that night!!!

My BIG day to MEET the WIGGLES!!!

Here I am in the lobby of the Nationwide Area waiting (patiently) to MEET the Wiggles. I was such a good girl the whole time, even though we waited about an hour! Here we are: Jeff, Captain Feathersword, Anthony, Sam (not Greg!), and Murray, Mommy, me, Jordan, Aunt Kristin, and Jackson! Pretty cute group shot huh?!?
I was SO EXCITED to meet them! They were all so nice! Mommy said she has NEVER seen me smile so much!
Here is a picture of Anthony and Jeff talking to me. Captain Feathersword stood up before we took the picture! Oh well....
I know you all want to see LOTS more pictures...I promise I will make sure mommy posts more tonight! We got in at 12:30 last night and I was up wanting to watch the Wiggles at 5:00 this morning so mom is a little sleepy. She promises there will be more to come tonight! Stay tuned!

Wiggly Countdown

We leave this afternoon for Columbus, Ohio! In just over 24 hours I will be MEETING the Wiggles! Pappy got us a room at the Hyatt so we are going down today. The hotel has a pool, so I get to swim tonight!! Another one of my FAVORITE things! Be watching the blog for pictures.......

GO Blue!!

Ok Daddy...I am ready to cheer!! This one's for you Josh....Notre Dame who?

HAPPY BIRTHDAY JACKSON

Birthday Boy!

Here is a cute picture of Aunt Kristin and Jackson before the party! These are the "Sponge Bob" cars I picked out for Jackson all by myself, I think he liked them!
Aunt Kristin....you are so silly. You make me laugh!

Jackson's Birthday Party

Thanks for inviting me to your birthday party Jackson. I had so much fun. I know that everyone there had a GREAT time. You sure did get a lot of great gifts, I can't wait to come over to play soon.
PLUS Aunt Kristin already raised almost $300 for the strollathon; she had people bring donations instead of gifts to sponsor "TEAM BUTLER" in Cincinnati. I think that makes you the leader in donations right now Aunt Kristin....yeah for Aunt Kristin!!!

The party was a pool party! My FAVORITE kind of party!
Family Photo

The McNamara's

My McNamara Aunt's (My Pappy's Sisters) came in town for Jackson's Birthday, I was SO HAPPY to see them again! Me and Aunt Mo
Me and Aunt Cathy
Me and Aunt Patty