Brooklyn Ashleigh Butler

Brookie Update

2012-01-25T16:34:00.002-05:00

Quick little update on Brookie Bean. She had her sleep study last night. She was a rock star - I wish I would have thought to take a picture of her - I have NO IDEA how she slept at all - probes on her head, by her eyes, and on her chin. She had a belt thingy around her chest and another one around her diaphragm. pulse ox on her toe and more sticker things up and down both legs - wow!
This is our last "hoop to jump through" before we can schedule her hip surgery. So, we are hoping nothing crazy comes back when they read the results.
Unfortunately her seizures are back daily :( booooo we are upping her keppra again she is on the highest does of Banzel she can be on for her weight. I assume that if this mixture does not work it will be back to the drawing board on a new mixture of anti-seizure meds :(
On Friday we are heading to see a surgeon about her g-tube. Her current one is WAY to big and her GI doc feels "she will grow into it." which of course is not acceptable - it was chosen because it is the lowest profile button - but it is so huge it sticks out from her belly over a half an inch. very frustrating. I will let you know how that goes!
Thank you ALL for your continued support, love, & prayers!!!

I'm running the Disney Princess Half Marathon......now stop laughing and read this post ;)

2012-01-18T13:25:00.005-05:00

Kristin, me, and Emilie - getting ready for our snow angels :)
"psyching" ourselves up!
snow angels for our Rett Angel Brooklyn
silliness - we gotta be crazy to be doing snow angels in shorts and to be attempting this half marathon!
what we will not do to raise money for Rett Syndrome!
Since the womb Kristin and I have been there for each other through first kisses and boyfriend break ups, college choices and childbirth, marriage and even divorce – she is my rock. It is only fitting that we take on the HUGE challenge of our first ever half marathon….TOGETHER.

Since Brooklyn’s daily life is a constant challenge for her, we decided to challenge ourselves by signing up to run the Disney Princess Half Marathon on February 26th, 2012 on the Girl Power 2 Cure Rett Team. (oh and we talked our friend Emilie in to it too!) Keep in mind….we have not run since junior high track! But we are running for Rett!

Rett Syndrome is caused by a single gene mutation that leads to underproduction of an important brain protein. Rett syndrome was REVERSED in mice in 2007! REVERSED! When the Rett research mice got the right protein levels in their brains, they went from cowering in the corner, shaking with seizures, to running around normally with their fellow mice within in few weeks.

I wish that at the end of the race, instead of a finisher’s medal, they would tell me a cure has been found. But until that day (which is VERY close) I will continue to raise money for research as a cure is possible in Brooklyn’s lifetime.

Please consider sponsoring me as I attempt to conquer ALL 13.1 miles in honor of Brooklyn’s struggle with Rett Syndrome.

To make a donation please click visit: http://www.firstgiving.com/fundraiser/brooklyn/princess-run

If you would like to learn more about becoming a corporate sponsor please visit: http://www.girlpower2cure.org/run/sponsor (please let me know if you decide to sponsor our team, as each sponsorship counts towards my fundraising goal!)

Hugs,
Kelly

Brooklyn's Hip

2011-12-23T08:59:00.002-05:00

We met with an Orthopedic Surgery team yesterday at Chicago's Shriner's Children's Hospital. First, I have to say I LOVE that place and everyone there - they were amazing with Brooklyn (and me.)
We had suspected that her hip was "out" we were not sure how much or how bad the situation was. It had been slowly working its way out over the past year or two - up until recently we were recommend to just wait.
However over the past 6-9 months it has seemed to gotten worse. Brooklyn stopped wanting to bear weight, she stopped sitting up on her own - she leans to the right pretty badly to take the weight off her left hip. We knew something needed to be done.
We were blessed to be introduced to the Shriner's here locally in Fort Wayne (thanks to Boston's OT!) who connected us with the team in Chicago, who we met yesterday.
We met with the doctor and his team, had xrays done and also met with both a physical therapist and a occupational therapist - each of whom were AMAZING!
As you can tell from the xray - her hip is entirely out of socket and has been for awhile by looking at the wearing of the "socket" HOWEVER - we are not too late - their plan is to do a little reconstruction on the pelvis - using bone from her femur - which will allow for the "ball" to go back into place.
They will be doing some work with her muscles as well while they are in there. To be honest I still have a few more questions regarding the surgery but realize, now that I am home, I was a little overwhelmed at the time and did not think of them all. Which is fine - we have a little while. I need to get clearance letters from Brooklyn's neurologist, gastroenterologist, pulminologist, an primary care doc. THEN surgery will be scheduled. Two weeks prior to surgery we will go over for labs and at that time we will be able to sit down once again with the team to go over any questions. It was also recommend to be by another rett mom that while I was there I should donate blood so that they can use my blood if needed for transfusion. (thank you for that suggestion) I wish Chicago was a bit closer - three hours and a time change for us, but I truly feel that she is in great hands there.
I have had lots of "newer" rett moms ask me HOW? WHY? Can we avoid this with our girls? I am by NO MEANS a doctor but for Brooklyn I do believe a lot of it has to do with the fact that she was never an independent walker - there was never a ton of weight bearing - muscle building going on with her. That combined with the fact that I believe some girls with Rett Syndrome are prone to certain things - it was probably going to happen anyway.
The GREAT news is that despite all of her leaning to the right - there is currently no curve - no scoliosis! Which I was super excited about! Her leaning is all muscle related so far - but also another reason to get the hips fixed!
Rett Syndrome has thrown us quite a few curve balls this year for sure but I will say it again - we will BEAT THIS - Brooklyn has Rett Syndrome - it DOES NOT HAVE HER!

Field Trip!

2011-12-20T14:50:00.004-05:00

Brooklyn's class has been saving their pennies for TODAY! They took all of their change into the bank and then used that money to buy goodies to take to our local animal shelter for the animals for Christmas - Brooklyn was PUMPED for today. (Although Grammy went too - which MIGHT have been part of the excitement - she LOVES her Grammy!)
Brooklyn chose a brush for the animals - this from a princess that LOVES to have her hair done - I am NOT surprised!
I only had one rule for her - DO NOT bring home a puppy!
I think she was looking for a loop hole in my rule - she was loving this kitten!
I am sure our 75 pound lab would love her too!
I know.....it WOULD be hard to say no to this face!

She had a BLAST and the animals got spoiled today - it was a win/win!
(I have to admit - one of her favorite parts seems to have been riding the bus! Poor girl gets dropped off and picked up every day - we deprive her of this JOY on a regular basis...oops)

"living with"

2011-12-14T21:07:00.004-05:00

AdaptiveMall.com is an amazing site filled with all kinds of adaptive equipment which is life changing for girls like Brooklyn! They also have a section of their site called "Living With" and this month the title is "Living With Rett Syndrome" and I think if you check it out you might recognize an adorable little someone :) Click H ERE to check it out!

2011 Christmas Play

2011-12-09T10:15:00.005-05:00

Brooklyn and mommy before the play - we were SO PUMPED that she ended up having a great afternoon as was able to go after our morning was filled with seizures - thank you all for your prayers!!
This years Christmas Program was titled "The Perfect Christmas Recipe"
OF COURSE Brooklyn is on the NICE list!!

She was a Volkswagon Van for the "Life is a Highway" song - TOO CUTE! Bad timing with this picture - because the girl was grinning from ear to ear all night!!! (isn't that always the way!.?)

Here she was getting ready to go in and play her part as "Cogsworth" from Beauty an the Beast. Her line was recorded on a switch. - She added "endurance" into the recipe :)
It was dark in there - hard to get a good pic!
Brookie during the group sing.
Brookie and Pappy :)
Her "star" poster outside the auditorium

Neurologist Update

2011-12-01T18:00:00.005-05:00

I am happy to say that I truly liked the new neurologist. (an answer to PRAYER!)

He wants to review the 72 hour video eeg for himself (instead of just relying on her former neuro's notes) Which I appreciate for sure. He wants to be certain what type or types of seizures they are. According my my description of them he feels they are tonic seizures. He is afraid that she might be having a couple different types of seizures and feels more comfortable reviewing the eeg to be sure.

For now we are doing 3ml Keppa in the am and 3 ML in the pm. He is not sure Keppra is the right drug.

Rett families - He mentioned that Tonic seizures can be tough to manage and mentioned the drug Banzel. Do any of your kiddos have experience with Banzel?

(sorry for the old picture but this post needed her cute smile don't ya think?!?!)

Game ON!

2011-11-28T20:54:00.000-05:00

Brooklyn was BELLY LAUGHING today while Sarah and Lauren were here - I just LOVE those giggles....I think it was because she was winning!

2011-11-23T17:00:00.000-05:00

I am thankful for all of my family and friends who support my efforts to find a cure!! Your investment and belief in what is possible for Brooklyn and all the girls living with Rett Syndrome means more than I can ever say. I hope you will take a moment and read through the GP2C 2011 Gratitude Report. THANK YOU!!!

Open publication - Free publishing - More rett syndrome

Happy Thanksgiving!

2011-11-23T12:49:00.002-05:00

Last year I wrote THIS post about Thanksgiving. Lots of great positive stuff there!

I have to be honest. I have been in front of this computer a few times now starting my Thanksgiving post and I stop each time. 2011 has been a tough one for me.

My ex had a new baby girl and our divorce was final (after 15 long months)
Brooklyn required feeding tube surgery
Brooklyn had her first trip to the ER via ambulance
My kids lost their insurance
Brooklyn started having seizures

This is not your typical "thankful" list for sure.

BUT....if I REALLY look at the list, my attitude changes.....Because of the divorce I have been able to officially close the door on that chapter of my life, begin to heal and move forward. Brooklyn's feeding tube had made her 24 pound weigh-in's a thing of the past - not to mention no more yucky tasting meds, they can all go through the tube AND no more horrific gas pain - we can vent her anytime! Her trip to the ER as we were surrounded by family, friends, and also her teacher and principal reminded me to be thankful that she is one SUPER LOVED little girl and that she has an amazing team at school cheering her on and supporting her (and me!) Due to insurance changes the kids lost their insurance but were both approved for disability medicaid (which of course is something I have a love/hate relationship with.) It allows me to not worry that medically my kids are provided for. As far as the seizures go - there is no real thanks for those honestly - but thankful for modern medicine and medical staff that help us take care of her needs!

SO yes, I am thankful.

As I continue to write I am flooded with more amazing things - Boston took his first steps this year, he said mamma for the first time, and started sleeping through the night in his own bed (well - not every night but SOME nights!)
Brooklyn although physically has had a rough year has been such a blessing - she LOVES going to school and to church and loves when her college buddies come over. She is such a joy to be around - she has a smile that can light up the darkest of days!

Yep.

I am thankful.

2011-11-15T17:12:00.001-05:00

Click on the photo above to read more about all the amazing things that Girl Power 2 Cure is doing! I am so honored to be a part of such an amazing organization - HAPPY BIRTHDAY GP2C!!

Some things never change!

2011-11-13T15:23:00.002-05:00

1994 I headed off to Cincinnati Bible College where I met five amazing girls - we spent the next four years playing such a huge part in each others lives....we laughed, we cried, we made memories! Here we are eighteen years later, still laughing (and supporting each other through the crying) and making memories - amazing, smiled filled memories! Thank you Danielle, Kati, Susy, Shannon, & Jen for being in my life then and now! I love you all!
(and thanks to Brian for recreating our photo for us!)

11.11.11

2011-11-11T11:32:00.003-05:00

Ever since I was a little girl I remember people making a wish when the digital clock read 11:11 - ok...I am guilty....I have made quite a few wishes at 11:11 :)
My wish today on this very special 11-11-11 is a cure for Rett Syndrome. I know what you are thinking - that is my wish with every birthday candle, loose eyelash, crossed finger, etc and you are right! It is!
Today though is even more special because GP2C is kicking off their $11.11 throughout 11/11 campaign! Starting today and leading up through the 15th - which just so happens to be the FIFTH birthday for Girl Power 2 Cure I want to encourage you to make a donation of just $11.11 in honor of Brooklyn. Help me wish GP2C a very HAPPY BIRTHDAY!
Click HERE to join in the celebration and make your donation!

2011-11-04T06:47:00.001-04:00

Can you just FEEL the love by looking at this picture???? Brooklyn is so blessed to have such a sweet cousin....WE LOVE YOU JACKSON!!!

2011-11-01T16:24:00.001-04:00

Brookie Bean relaxing after school.....I love this little girl! (She loves her new chair!)

Halloween Party!

2011-10-31T17:08:00.003-04:00

Grammy made chocolate covered marshmallow suckers for both of Brooklyn's classes today and Granny (one of her aides) helped her pass them out!Brooklyn and Miss Stephanie (painting of some sort I think?)
Cupcakes for snack today!
Brooklyn giving her 1st grade teacher her pumpkin sucker :)
Brooklyn was a "skela-cutie today :)

Seizures

2011-10-29T08:01:00.004-04:00

For the past four years since our Rett Syndrome diagnosis I considered us one of the "lucky ones." I watched as many of the other girls struggled day in and day out with seizures - listened to their mommies (my dearest friends) cry and yell out of frustration. I could listen and encourage them but I could not relate. Unfortunately, now......I can relate all too well :(
Those of you who follow our lives know that over the past couple of months we have thought Brooklyn might be having seizures and unfortunately tonic seizures were confirmed via her 72 hour video eeg last month.
I made the agonizing decision to start her on seizure meds this week. Our drug of choice? Keppra.
I thought the feeding tube decision was a horrible one....that does not even come close to this choice. Not even close. I hesitated to start meds because I feared a personality change (a zombie-like little girl), Brooklyn is a lively, social, fun-loving little girl and I was afraid I would see that vanish overnight. Instead what I saw is her little body struggling with these seizures - exhausting her.....seems like if we did not start meds we would not keep our vibrant personality either - she was too tired after each seizure. SO we started them and now we wait.....
The picture above was taken following a seizure last night. It was a big one. a bad one. We had to put the oxygen on her to help her "come out of it." I hesitated to post this picture actually. Because it looks sad, she seems helpless.
This is what Rett Syndrome does.
This is why I fight EVERYDAY to raise awareness and funds for Rett Syndrome research. The past 29 days have been focused on awareness as we participated in Rett Syndrome Awareness month but for Brooklyn Rett Syndrome does not end on the 31st. She will continue to fight this battle every day of every month of every year until our cure is found.
That cure is coming! It has been proven reversible in the lab and scientists say it is not a matter of IF it can be cured but WHEN. Research takes funding. LOTS of funding. Knowing that money stands in the way of getting my little girl back is heartbreaking. So I continue on....hosting fundraisers, linking to Brooklyn's GP2C web page - ANYTHING it takes to continue to move our research forward. ANYTHING it takes to cure my little girl.
I want to thank ALL OF YOU who continue to support us in our fight against Rett Syndrome both financially and emotionally. It is a tough road - I could not do it without all of you!
Before Rett Syndrome Awareness month officially comes to and end, you KNOW I have to post the link one more time: Brooklyn's Page is here for any of you who want to make a donation in her honor.
I know that one day we will be choosing between prom dresses instead of seizure meds......how I long for that day....until then, we fight! I hope you continue to fight with me!

Video Slideshow from our GP2C Rockin' for Rett Angola!

2011-10-20T13:03:00.002-04:00

3rd Annual Rockin' for Rett - Angola, IN - 10.15.2011 from Girl Power 2 Cure on Vimeo.

EEG results

2011-10-19T10:01:00.003-04:00

Grammy and Brookie dancing :)

We finally met with the neurologist this afternoon to go over the results of our 72 hour video eeg. The recording captured seven "episodes." Two of the five episodes were determined to be seizures - these were the "big" ones I talked about where she goes very stiff - then shakes and then goes limp. During these, her eyes rolled up and to the left and her O2 stats dropped and her lips turned blue. They are being labeled Tonic seizures. She also was "out of it" following these episodes.

The rest of the episodes - which are the majority of what we see on a daily basis are NOT seizures. These are her "vacant" staring spells, her tremors upon falling asleep and waking up, and her "jerky" moments throughout the day. NONE of these registered any change on the eeg. Basically these are simply a result of autonomic dysfunction associated with Rett Syndrome.

So...what now??

Brooklyn has been on Lexapro for about a year for anxiety (everything her body deals with daily because of Rett) - we have chosen to start there. She has gained SIX pounds since the feeding tube was placed in July (YEAH!!) We have seen her "episodes" increase in frequency and duration since the weight gain - we hope by increasing her lexapro that might "level things out" a bit. Since we do not want to change two meds at once we are holding off on starting seizure meds - which (should we start those) would be either Keppra or Zonagran.

Her neuro wants us to track the "big" ones over the next three weeks (when we have our return visit) while she adjusts to the increased lexapro dose. We want to determine how often the tonic seizures are happening and how long they are lasting. We do not want to medicate too soon if it is not necessary. On the other hand, I do not want to hold off on a medication that might get rid of them all together....UGH! These are not choices I anticipated having to make when I became a mother :(

Her pulmonologist (who has a niece with Rett!) was very nice but to be honest did not have much input. Her breathing issues were basic Rett problems - the breath holding and hyperventilation - he is glad we have the O2 at home if she needs it but his main concern is aspiration (which Brooklyn does not currently have trouble with - and praying that stays a non issue!) He recommended a sleep study just to make sure that she is not silently aspirating at night but was thrilled that the eeg showed NO nighttime seizure activity!

So....it is a watch and see for now.

I want to thank ALL of you for your prayers and kind words of encouragement over the past few weeks. Please continue to pray for Brooklyn - unfortunately until our cure comes and we get rid of Rett Syndrome completely there will always be a battle for us to fight!

2011-10-14T06:16:00.000-04:00

Join us Saturday Night!!!

2011-10-13T05:14:00.000-04:00

72 hour video eeg

2011-10-12T16:59:00.002-04:00

We are now in our final 24 hours of the 72 hour video eeg.
We have caught a couple of the episodes on video which is good - today we caught the worst one I have ever seen. It is good that we got in on film but horrible to watch Brooklyn go through it. The eeg will determine if these episodes are seizures or not. What else might they be??? Well Rett Syndrome throws a lot at us actually. Our girls deal with autonomic dysfunction which is also a possibility. The episodes have gotten stronger and more consistent with the feeding tube which could mean her body is not use to all of the calories and nutrients and is having trouble dealing with this increase. Also, she is on Lexapro for anxiety and that needs to be increased with her weight gain......so.....the options are pretty much endless but ruling out seizures is step number one. Brooklyn has been a TROOPER through all of this. She is MY HERO.

2011-10-07T15:22:00.000-04:00

Why I love inclusion

2011-10-06T12:32:00.003-04:00

Those of you who read my blog know that Brooklyn is attending a "typical" first grade room for most of her day. I love inclusion, I love that my school is so supportive if inclusion and I love that the kids there love Brooklyn. I recently had a mom email me a couple of her daughter's "Brooklyn stories" and they were too freakin cute not to share!!
"M"'s mom email said this....
"My fav Brooklyn story was shortly after school started. "M" came into my bathroom after school and said: 'mom, you know brooklyn in my class. well, she can't talk but she can laugh. we watched a movie today and she has the best giggle ever.'
The other story I can think of off the top of my head is about Brooklyn's desk. Remember "M" wanted to know what was in it? Well, "M" wouldn't ask Brooklyn what was in her desk because she was scared she would get in trouble for talking. So she peeked in it when Brooklyn's desk was open and she said: 'Mom! Brooklyn has the same stuff in her desk as I do! Can you believe it?'... and I'm thinking to myself: yup. we are all pretty much the same on the inside."
I hope those if you reading the words from this email are just as touched and encouraged as I am...now...if everyone in the world showed as much love ads "M" and her mom!

Worst day yet....

2011-10-03T19:51:00.002-04:00

I am sure people cringe when they here me talk about Rett Syndrome awareness or about my latest fundraiser to finance the research for our cure but days like today are why I do what I do - because Rett Syndrome has taken over my daughters body and in turn taken a part of my heart.

Today has been the WORST Rett Syndrome day ever. Brooklyn and I just returned home from the ER. They had to call an ambulance to school - she was blue and unresponsive. We have been dealing with these "rett episodes" for awhile now but they are getting more frequent and stronger...praying they are not seizures. (although they suck no matter what they are!) We see her neuro on Wednesday. This has been a BAD "Rett Day" Yes Rett Syndrome - I will say it again - we are very AWARE of you here in our house but I will continue to raise awareness and educate the world so that people might help me in my fight to get rid of you for good. Leave my little girl ALONE!

2011-10-02T06:56:00.001-04:00

A friend of mine did this for me, yes - those are OUR toes! Join the fun.....paint your toes purple for Rett Syndrome Awareness!!

October...a time for Awareness!

2011-09-28T15:37:00.003-04:00

October in my house since 2005 has meant Rett Syndrome Awareness and it still does of course, however now Rett Syndrome has to share the spotlight with Down Syndrome. Who knew as I entered into my "mommy" stage of life that October would no longer just mean trick or treat and pumpkin carvings but rather shouting from the roof tops to educate the world about my kids. Actually......What are the odds that both of my kids would be special needs AND that "their" awareness months would both fall in October?
Believe me...I would give just about anything to NOT be raising awareness as horrible as that sounds! (Or I should say I wish I was not raising awareness for syndromes that have affected my family so deeply.)
That being said...
OCTOBER IS RETT SYNDROME and DOWN SYNDROME AWARENESS MONTH!!!
I am asking all of my blogger friends to help me in raising awareness in honor of Brooklyn and Boston! Please share this blog as well as Boston's!
If you want to make this month extra special you can even make a donation towards Rett Syndrome Research in honor of Brooklyn by clicking HERE.
I hope to be sharing lots of facts, videos, and research news regarding Rett Syndrome here over the next month so be sure to check back!!

2011-09-13T12:33:00.002-04:00

Don't let her fool ya....she LOVES kisses from Uncle Josh! See what I mean ;)
Love these two rug rats :)

2011-09-08T17:00:00.001-04:00

Check out the BEAUTIFUL journal for our GP2C gala! I am getting SO excited for this event! I can't wait to finally meet all my Washington DC "Rett Family!"

Open publication - Free publishing - More rett syndrome

HOMEWORK!

2011-09-08T06:04:00.000-04:00

Brooklyn had a Humpty Dumpty that she was to color for a writing assignment later this week. Jackson was hanging out with us so we asked him to help her. She chose the colors for each part of the body and he colored for her :) Jackson said "I bet you will get an A+ Brooklyn!"

Back to school......sickness????

2011-09-07T10:52:00.003-04:00

ah...ah...ah..AH.AH..CHOOOOOOOOO
Yep...our first sickness of the fall - you know, the "welcome back to school it is great to see all your friends AND bring home all the germs" sickness. It hit our house this week. Brooklyn and Boston are both pretty miserable :(
No worries - we are stocked up on Boogie Wipes! Brooklyn stayed home yesterday since she was running a fever and today ended up at home too - she probably could have gone but she just seems so tired and still has those "sad/sick eyes" so I figured one more day at home would be ok. Besides I asked her if she felt like going to school and she looked at the "no" card which is not like her - she LOVES school.
Hopefully, with some rest, lots of liquids and some extra Grammy TLC today she will be good to go!
Hope all of you reading this are staying healthy!

Horseback Riding

2011-08-31T09:22:00.002-04:00

Every Monday night Brooklyn gets to ride horses.....usually "Uno." We had to take a few weeks off after her feeding tube surgery but have been back riding the past two weeks. I finally remembered to snap a few pictures.....look at this smiling face. I know she is not looking at the camera but this picture was just too sweet not to share!
She looks so tiny up on that horse! That is Cheryl behind her - Brooklyn's FAVORITE volunteer - she walks on side for support and I walk on the other.
We do a lot of sideways riding - her left hip is really giving her trouble lately and to spread her legs across the horse to ride front facing hurts quite a bit :(
We won't get to ride next Monday because of Labor Day.....shhhhh, don't tell Brooklyn! She hates when we have to miss!!!

Some pictures from school

2011-08-29T16:06:00.004-04:00

This year we are sending a digital camera back and forth from school each day - it helps us document her day - allowing us to "talk" about her school day each evening.

What do you think......This is Brooklyn after we finished an "about me" project for first grade....you think she likes school ???!!! :) Here is Brookie in her first grade class - they just finished a page in their weekly reader

Today all of the first graders got together for a story.

Using her yes/no cards to answer questions for Miss Julie in her special ed class room

Working on the months of the year on the smartboard

A great Rockin For Rett Silent Auction Item!!

2011-08-29T10:14:00.006-04:00

We are starting to receive some GREAT silent auction items for our 3rd Annual Rockin' For Rett event which is set for Saturday October 15th! One amazing company that has joined our efforts is Paper Culture. They are providing us with a $100 gift certificate! If you have not heard of them you MUST check them out!

Here is a little more about their company:
At Paper Culture our mantra is “be modern. be eco.” Whether you’re looking for baby announcements, baby shower invitations, holiday cards, birthday party invitations, stationery or our newest addition, bamboo wall art, Paper Culture has set out to deliver bold modern design through eco friendly products and has been seen in People, Real Simple, Daily Candy and at the Tony Awards.

· Modern Designs - Clean lines, bold colors and fresh typography

· Eco-Friendly – No new trees are cut down because Paper Culture uses exclusively 100% post consumer recycled paper for its cards and envelopes and bamboo for its wall art. In addition, Paper Culture plants a new tree in a US forest with every order and has pledged to plant 1,000,000 trees.

· Premium Quality – Paper Culture cards are printed on 130 lb. weight heavy stock paper cut with signature rounded corners. By comparison most leading companies use only 80-110 lb paper. For its wall art, Paper Culture uses a luxe, bamboo panel that feels as beautiful as it looks.

· Mail & Message - If you choose, Paper Culture will stuff, address, stamp and mail your cards for you for FREE. The only charge for this service is the actual cost of the stamps! Also, when you provide your addresses, you have the option to print a unique, personalized message on the back of each card. Say what you want, to whom, on one, some or all your cards!

· Signature Packaging –When you choose to address and mail your cards yourself, Paper Culture will ship them in a signature logo box (made of recycled paper of course) – a keepsake to store your cards in style while they wait to be sent.

See How We Compare: http://www.paperculture.com/how-paper-culture-compares.html

Some quotes from press and our customers:
“Our baby announcements are fantastic. Love them. It was so easy, I'd consider having another kid!” Lindsey Gladstone, Editor, DailyCandy
“adorable invitations” Real Simple
"Paper Culture is our pick for the online card company that has the trendiest modern baby stationery and holiday photo cards around." Coochicoos
"We came across an amazing array of birth announcements during our search, but it was a no-brainer to hail Paper Culture as our top pick." Babble
“adorable … love it!” Jennie Garth
“cool stationery” Samantha Harris
“loved both the modern designs and the super high quality, eco-friendly papers. We have ordered thank you cards and personalized stationery for both of us and have been using the cards left and right!” Jewel & Ty Murray
“Paper Culture notecards: they are absolutely our favorite way to stay in touch” Minnie Driver

GENERAL INFO:
Website: http://www.paperculture.com/ Email: contact@paperculture.com

Phone: (877) 77-CULTURE (877-772-8588) Our Location: California (Northern, Bay Area)

Facebook: http://www.facebook.com/paperculture Twitter: http://twitter.com/paperculture

THANK YOU Paper Culture for your support in our fight against Rett Syndrome!!

Pictures from my sisters wedding!!!

2011-08-27T08:34:00.000-04:00

Make a video - it's fun, easy and free!
www.onetruemedia.com

First Grade "introduction"

2011-08-23T09:53:00.004-04:00

I want to share the letter that I will be sending home with all of Brooklyn's first grade classmates, some of the students were in her kindergarten class and to be honest MOST of the students in Ryan Park Elementary School know Brooklyn :) But...I wanted all of the parents to also be "introduced" to her. I also include one of Brooklyn's GP2C purple cards (http://www.girlpower2cure.org/how-to-help/thepurplecard ) for each family as well. ANY Rett Syndrome families are welcome to use this letter and personalize it for your daughter.
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Hello!

My name is Kelly, my daughter Brooklyn will be in Mrs Minnick's first grade class this fall with your child! Your child might have been in kindergarten with Brooklyn, if not I wanted to introduce her to you!

You see, my little Brooklyn has Rett Syndrome. She has a damaged gene which regulates a special protein in our bodies. This protein helps us to walk, talk, and move around.....it really helps us do lots of things!

So, Brooklyn cannot walk, or talk, or even use her hands very well....but she is full of love, life, and energy, plus she is SMART! She understands everything going on around her....she just cannot respond in words. She uses her eyes to communicate. Your child will see her using yes/no cards, an eye-gaze board, special “buttons” and even a computer that can talk for her!

Brooklyn will be working with therapists during the school day to practice things like standing, walking and different ways to communicate. She will also have a personal aide with her in the classroom at all times to assist her with classroom activities and procedures. She is SO excited to spend most of her day with some active, wonderful children!

My hope is that like kindergarten, this will be a great experience for everyone. Brooklyn will learn from a wonderful teacher, fun students and friends! And, I hope, your child will learn about a different kind of "special" child. I'm sure they will have fun helping her and playing games!

If you (or your child) have ANY questions or concerns, please do not hesitate to call me at home. My cell number is 260.243.2722 or my email is specialmommyx2@yahoo.com If you or your child would like to learn more about Brooklyn or Rett Syndrome we would love for you to check out her blog at www.brooklynbutler.blogspot.com

Thank you in advance for getting things off on the right foot and helping your child understand that Brooklyn is a fun little girl that just needs a little special help!

Sincerely,
Kelly Butler (Brooklyn's Mommy)

My Tobii

2011-08-16T07:00:00.000-04:00

For those of you in the 'Rett World" you will recognize this piece of equipment RIGHT away....It is a My Tobii! For the rest of my non special needs followers this is an AMAZING....we are talking LIFE CHANGING piece of equipment! It is a computer - only better! It comes the an attachment that allows Brooklyn to access the computer with her eyes. In this picture Brooklyn was able to choose what music she wanted to listen too! Yes. We have tried something similar through the school system before called the Dynavox that unfortunately did not work out so great with Brooklyn and the school (LONG story!) Anyway...we are trialing this device for a month and Brooklyn seems to really like it. It seems much easier to navigate than the Dynavox was. In this picture below Brooklyn was telling us her favorite color.
I could seriously get use to watching this little face LIGHT UP as she gets to communicate her wants and needs to us! I took this one from behind the MyTobii so you could see her looking at the screen, making her choices.

We will meet with the speech therapist once more time next week. Our hope is to go ahead and begin the LONG process of getting a MyTobii approved through our private insurance.....a device like this comes with a hefty price tag - we are talking $20,000. So....if you are reading this and are one of my friends who aways is asking what you can pray for - this is it - that our insurance will cover this speech generating device for Brooklyn!

ipad

2011-08-15T11:13:00.004-04:00

This summer the kids received an AMAZING gift from friends of mine....an ipad! Boston and Brooklyn BOTH love it. One of the reasons I love it for Brooklyn is that it has increased the amount of time her cousins spend with her.
Jackson adores Brooklyn but sadly Rett Syndrome has taken away the ability for her to participate in many of the things that Jackson likes to do. The ipad has been a HUGE hit - Jackson loves the games on there and of course the books! In this picture Brooklyn and Jackson are "reading" Toy Story together.Seriously, how sweet are these two?!?

Oh....and I know some of you will ask - where did I get the SUPER COOL ipad holder right? You can check out all the details on RettGirl by clicking HERE. (It even comes with a stand too!!)

Back to school??? NO WAY!!!!

2011-08-14T14:46:00.002-04:00

Am I seriously gearing up for BACK TO SCHOOL already? Where in the world has this summer gone?? - I had such BIG plans for you summer! It has been almost 2 weeks since my last blog post and it was even a re-post of a friend of mine. Of course it was an AMAZING, heart wrenching exactly how I feel post but still - a reminder of what a blog slacker I have truly been.
I could use the excuse that I am too busy with my Rett Syndrome - Down Syndrome - Divorced Single mom life to blog but that is just a sad, sad, excuse really! I promise....moving forward I will be a better blogger :)
WHY???? Because I know you all love my kids (and some of you still even want to hear about me!) and I will stop letting you down......I am setting myself up for major failure here aren't I?!?!?! :)
Honestly though - you all have given me such love and support over the past four years that I have been writing this blog - I THANK YOU!!
Besides, Brooklyn starts first grade in less than two weeks - that means LOTS of new blogging material for sure! We have been a little bit of a slacker family with preparing for first grade - I had such HIGH hopes....BUT we have started working on our first grade sight words - thanks to the ipad and all the GREAT apps we have found! PLUS Boston turns two in less than a month and has started taking steps ON HIS OWN so yes....lots of blogging material for him too!
So.....for those of you who have just about given up on following my blogs - don't! I promise.....I am BACK.....and maybe even better than ever :)

Thank you Bridget!

2011-08-02T17:40:00.004-04:00

There are times that I read a blog post written by a friend and I am just touched in a way that I just do not have words to describe. This post by a fellow Rett Syndrome mommy, Bridget MacDonald is one of those posts. Thank you Bridget for putting into words how my heart feels every day. I love ya girl!

Monday, August 1, 2011
Split Personality
Not many people realize this but I have a split personality. At times I am a wife and mother of 3, other times I am a 6 1/2 year old little girl. Living a double life is difficult, exhausting and often times just plain overwhelming. The constant back and forth of each can be confusing to keep up with but it's a life I have been given and must keep up with, my daughter needs me.
There are many people out there like me. They are easy to spot, they are the moms with a child in a wheelchair at the park that picks them up, struggles to carry them up the ladder and then slides down the slide - because they deserve to play. It's the mom who is in the grocery store showing their non-verbal child 2 cereal boxes so they can make their own choice for breakfast - because everyone deserves to have a choice. It's the mom who wasn't able to drop her child off at a birthday party, she had to stay, but smiles as she feeds her daughter cake and helps her daughter to carry a gift to the birthday girl - because she deserves to be included. The mom who takes her daughter to church and pulls her out of her chair so she can help her dance, then grabs both of her hands so she can clap - because she deserves the right to praise. It's the mom who invites other children over because her child can't pick up a phone, or dial, or speak - because everyone deserves a friend. It's the mom who is in the movie theater reaching over to feed her child popcorn because no movie is complete without popcorn along with it. It's the mom who pulls her child up to her feet at a school assembly because all the other kids are standing. The mom who translates slurred talk or special looks to others because their child deserves to be heard. The mom who is helping her child walk, or run, or jump or even sit because she deserves to experience what all the other kids are. She's the mom that is happily explaining to a group of children why her child wears arm braces or travels in a wheelchair, or has a pacifier or can't speak because her child deserves to be understood and accepted - (even though she really feels like grabbing her child and running, crying and hiding until all of the questions go away.)
Us, "split personalities", aren't on Jerry Springer because we don't lead exciting or flamboyant lives. we just spend our days putting ourselves in our children's shoes and trying to think, act and do what our kids aren't able to. We are the ones that are watching other kids to see what they play with, how they talk, dress, and wear their hair, so we can catch a glimpse of what our own child might like, do, say and look like if they were able to voice their opinions. It's not easy to lead a double life. You must keep a smile on your face at all times because there's no telling when you have to change into a 61/2 year old again (and we all know 6 1/2 year olds are always smiling).
Most of the time our evenings leave us exhausted, we change back into a parent and have to administer meds, hook up vents and tube feedings, snuggle, bath, dress, read stories and tuck in. Then we wait, at this point we aren't sure what we are, caught between the 2 personalities. At times we can be the mother that checks in on our kiddos, prays over them and heads to work or to sleep. Other times we need to turn into a 6 1/2 year old girl and play, watch TV, or read until our child can settle to sleep. When morning comes we wake knowing that we need to fulfill the lives of 2 different people again and that we only have 24 hours to accomplish that.

Bridget and Annie

MOVIE TIME

2011-08-01T11:01:00.006-04:00

I LOVED the smurfs as a kid so I could not wait to introduce Brooklyn to the smurfs when the movie came out. It worked out great because my friend Shannon and her girls were in town visiting so we had quite the crew! It was a HIT! Brooklyn was laughing out loud at some of the funnier parts of the movie - which of course made it all the better for me too! Faith, Grace, Jordan, Jackson, and Brooklyn - all loved it!

A trip to the movies......just another "typical" kid sort of thing to do ;) We are pretty much kicking Rett Syndrome's butt this summer...and lovin every minute!

Play Date

2011-07-27T14:07:00.002-04:00

The Wilhelm girls are super sweet friends of Brooklyn's. They LOVE having her over to their house to play and of course Brooklyn LOVES hanging out over there! They have been wanting to have Brookie over to play but I have been waiting to make sure she is mostly healed from surgery. TODAY - everyone was happy that the play date was ON!

Brooklyn LOVED looking at the pictures of the girls riding horses! And of course no playdate is complete without a tea party!
I also want to thank Cheryl (their mom) for taking such great care of my angel and for taking pictures for me (she knows I blog everything!) I sit here and think back....there was a time I worried that Rett Syndrome might take away the reality of things like close girlfriends and tea parties for Brooklyn....I could not have been more wrong!

Feeding Tube Surgery

2011-07-15T16:45:00.003-04:00

Wednesday was Brooklyn's feeding tube surgery day. For those of you who follow my blog you know that this has been a decision a long time in coming. Brooklyn has aways been a little peanut but she really is underweight these days and after a tough winter of sickness we knew it was time. Brooklyn did great as we waited for surgery...you know how it goes, you are there for a couple of hours before the procedure. We took her portable dvd player and snuggled until it was time.

They got her all hooked up....the longer we waited the more "over it" she was....never any tears though - more of a "lets get this over" attitude!

Surgery only lasted about a half an hour - it went smooth. We had some trauma in recovery unfortunately because they needed a urine sample (as a follow up to an earlier abnormal test) They were to get the sample immediately after surgery while she was still "out" However, a nurse "forgot" and my poor baby who was trying to come out of anesthesia wakes up to five nurses holding her down to cath her.....needless to say I went in to complete "mama bear" mode and let them have it. I know that doesn't change anything - but I sure felt better. The good thing is that once we were out of recovery and onto the peds floor things went much better.

There was time for lots of cuddle time with my little girl.

She was admitted for 24 hour observation which is pretty standard for this type of surgery. We needed to bolus/gravity feed her a few times as well as experience an overnight/pump feed before she could be released.

We did hit a brief "rough patch" when we attempted the pump feed. The formula just would not go down into the button. Of course the nurses tried all their "troubleshooting" tricks but had to call the surgeon who gave a list of possible problems ranging from dried blood blocking the tube or swelling from surgery to a malfunction of the button which would require an extended stay and possible additional surgery.....it was a stressful few hours but around midnight or one we were successful with the feed and could breathe a HUGE sigh of relief!

We are home now. She is doing really great - I still haven't seen much of that amazing Brooklyn smile yet but we are getting there. She is tolerating her tube feeds great and also is eating by mouth too - even had a Happy Meal for lunch.

Thank you all who follow this blog and pray constantly for me and the kiddos - you all mean so much to us! I will keep you up to ate on how she is doing I promise. I bet before long we will have a smiley Brookie picture posted!

GI Surgeon Update

2011-07-07T14:56:00.003-04:00

I couldn't do a post without a picture of my girlie (who has been AMAZING though all of this testing!)I met with the GI surgeon today to follow up with all of Brooklyn's tests. Overall there was a lot of great news: Tested negative for Cystic Fibrosis, Celiac Disease, and Lactose intolerance. The Somach Emptying test came back normal. The swallow study showed delayed chewing which we knew but no signs of reflux or aspiration while she was eating and drinking.
The PH Bravo probe did show prolonged reflux at night while she was sleeping - but NO signs of permanent damage due to reflux with the biopsy he did. (we had to have her off of her Prevacid for a week leading up to the test.) There was some debate over having the fundoplication surgery while we are in for the feeding tube placement. Ultimately, we decided AGAINST doing it. Brooklyn's reflux is under control with Prevacid. It is not something we have struggled with. The thought of altering my baby's stomach and esophagus at this point is just not something I can make the decision to do. The surgeon was 100% supportive either way which was nice. I know in the Rett Community the fundo is an area for debate. I have heard families that say it was the right choice for them and others who have said they would never ever choose to do the fundo if they had to make the decision over again.
So.....feeding tube surgery is being scheduled. The GI office will be calling me tomorrow morning with our surgery date. I want to thank all of you who have prayed for me and for Brooklyn over the past two weeks as she underwent SO much testing. It has been an exhausting couple of weeks for sure. Keep the prayers coming - I would like to say that I have no worries about the feeding tube....but that is a big fat lie. It freaks me out. It is just one of those choices I just never wanted to make but here we are, waiting for the call for our surgery date. I know in my heart she needs it and now that I am much more educated on the tube I am at peace with my decision. We plan on her eating by mouth during the day and then getting the extra calories that she needs via the pump at night. It is a win/win.
I will let you know when we have the surgery date.....until then.......

Win a MyTobii P10!!

2011-07-06T13:21:00.000-04:00

If you are the parent of a non verbal child then you know how LIFE CHANGING it would be to hear your child speak to you. I often dream of the day that Brooklyn will tell me she loves me or tell a goofy joke, or even talk back to me!
For all of my blogger friends that are parents of a special needs kids who has "lost their voice" I have some amazing news!!!! Girl Power 2 Cure is raffling off a MyTobii P10!!!! This is HUGE, those of you who have ever fought the schools, the doctors, the insurance companies, everyone - you know how amazing it would be to have a device like this just handed to your child! It could happen!!!
It is time to rally your friends, family, & co-workers! Each raffle ticket is only $10 - just think a friend could spend $10 and your child could end up with a $15,000 eye gaze system. WOW!!! You can print off your raffle tickets by clicking HERE. There is even an added perk - the winning ticket that is drawn gets $500 to keep for themselves......seriously....can this get any better?!?!?
What are you waiting for - print off your tickets and start selling!! We are accepting tickets until September 16th and will be drawing the winner on September 23at our Georgetown Gala (NO, you do not have to be present to win!!)

If you have any questions, send me an email: kelly@girlpower2cure.org

(to all of my friends and family, Brooklyn is not eligible to win the device but of course donations in her honor are ALWAYS accepted!)

Welcome to "the club"

2011-06-29T10:41:00.001-04:00

I apologize to those of you who follow both of my blogs but I feel like this post needed shared BOTH places!

A fellow "Rett Mommy" (thanks Erica!) posted this link on facebook and I was so moved by it that I want to share it with all of you who read this blog: http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/
You see.......over the past three years I have joined quite a few "clubs" The Rett Syndrome Club, The Preemie Club, The Down Syndrome Club, & The Divorced Single Mom Club. None of these were memberships I went looking for but nevertheless, I joined (I may or may not have joined kicking and screaming and possibly even crying.) However, each of them has changed my life dramatically, hopefully for the better. I want to thank each of you in these clubs for making it feel less like a club and more like family. I am a stronger woman because of each of you.

Update from the week of tests

2011-06-25T07:54:00.003-04:00

I know there are so many of you who have been thinking of us and praying for us this week. We thank you! Yesterday was for sure the LONGEST of the days. We went to Lutheran Hospital to have the Bravo PH Probe placed. In case you are too worried, here is the BIG smile she gave me last night to let me know she was ok. :) This is Brookie back in the waiting room, what a trooper!
Seriously, is she a cutie or what?
I am still having trouble getting her to drink anything - that probe feels so weird in her throat that she is not wanting to allow any liquids to go down. We have only had a couple sips of water an a couple sips of juice in over 24 hours. So...I am hoping she wakes up THIRSTY this morning!

Is this week over yet?

2011-06-23T14:24:00.002-04:00

My poor girl is EXHAUSTED!

It has been a LONG week! We met with Dr. Gohill last week for our consult and the decision was made that a feeding tube is needed for Brooklyn and should be placed this summer. It is weird how I can type that statement so calmly now...... a feeding tube used to be my WORST Rett Syndrome fear. I really am not certain why actually, but honestly, I am ok with the decision. My sweet angel is only 27 pounds and had dropped to 24 pounds this winter during her battle with constant illness. I know that she needs the tube to supplement the calories she can't get during the day. However, prior to the surgery for the tube there are tests.....lots and lots of test. Which leads me to this post.

Monday: Arrived at Lutheran hospital at 7:45 am to start the day with a sweat chloride test - to make sure she does not have cystic fibrosis (yes, on top of Rett Syndrome - that would for sure be unfair!) Following that there was the urine test - which they use a bag taped to her to catch the urine - which is WAY better that doing a cath which is of course the alternative. Next on to blood work - four vials to be exact! They got her on the first poke and she was a trooper! The final test for the day was the swallow study. This involves mixing barium with water and having her drink it through her sippy cup (which she ROCKED!) They then coated a variety of food in the barium powder for her to chew and swallow. I have to admit it was cool to watch!

Tuesday: Back to the hospital after FASTING for twelve hours to REdraw the blood and get another urine sample - her glucose leves were high from Monday :( These did not go as smoothly for us but eventually.......success! As well as an "all clear" with these results too.

Tomorrow is Friday which means back to Lutheran in the morning for her endoscopy and bravo probe placement - these will check on her reflux - which of course we pray is FINE!

Once all of the above mentioned tests come back - if all looks well the surgery for the feeding tube will be scheduled.

So, if you happen to see me this week and it looks like I haven't sleep in a week, you are right....I haven't!

A Day at the Zoo!

2011-06-14T10:33:00.003-04:00

On Saturday we had the opportunity to meet up with the Mast Family. They are an amazing family from Michigan. Their daughter Mikayla has Rett Syndrome just like Brooklyn. It is always SO great to meet other little girls with Rett an of course spend time with other moms who totally "get" me!
Nicole, Mikayla, Me, Boston and BrooklynBrooklyn LOVES feeding the giraffe!

Seriously, how cute is this face!? He looks like he is smiling!

Thanks Grammy for your help!
Trying out the drums.....

Taking the girls through the cool mist spray - it was a pretty hot day so these felt GREAT!
Such a GREAT day! We hope to hang out with you all again soon!!

NO WAY it's over!

2011-06-10T16:59:00.004-04:00

I can't believe kindergarten is over already?! Where did that year go? Yesterday Miss Weber had an awards program for her class. It was so nice! She gave out "candy bar" awards. Each child received a candy bar based on personal experiences throughout the year. Brooklyn got a Snickers bar because of her amazing giggle. She talked about how when Broolyn giggles it is so infectious the whole class smiled. She also said how much she loved having Brooklyn in her class and that they all learned so much from her. Both she and I were tearing up! I have to thank Bre, she did such an amazing job including Brooklyn in Kindergarten! Sorry for the fuzzy picture but here she is with her award!

Brooklyn also has an amazing special ed team with Miss Julie and her crew (Granny, Stef, Heidi, & Laura) She was a pretty lucky girl - getting double the awards since she spends her time in both classes :)

Here is her certificate from the special ed kindergarten.

AND....her general ed certificate!

In Miss Julie's room there was a "hand" theme throughout the year. Each month they did an art poem project that they put together for an AMAZING "hand" book at the end of the year, here are a few of my favorite pages:

2011-06-08T16:05:00.002-04:00

Hmmmmm.....what is so funny? Popping my brother in the nose :)

Actually, she did not really ht him but this picture makes me laugh because it sure looks like she is going to. I guess a little bit of Boston love goes a long way in her book!

2011-06-06T16:44:00.001-04:00

I had to post this picture on BOTH blogs, it was just too cute not to! Brooklyn was 2 1/2 in her picture wearing this shirt and I took Boston's picture today in it, he is 20 months. SO stinkin cute!

2011-06-02T16:07:00.002-04:00

It is finally warm enough to be outside in the evenings! Brookyn loves to swing with Grammy :) (and I think Grammy kind of likes it too!!)

Is Kindergarten really over????

2011-05-26T22:13:00.004-04:00

Brooklyn had such an amazing kindergarten teacher - she is really going to miss Ms. Weber next year! Here is one with Brooklyn and her classmates :)

and one a little closer up and better lighting :)

It still does not seem possible that kindergarten is over - my little girl is growing up!

I do have to admit that tonight was tough. I know most times I am SUPER ULTRA positive on this blog. Yes - Brooklyn has had a GREAT year and I think everyone on her team is really starting to "get" her and Rett Syndrome. She was included into a general ed kindergarten and made some AMAZING little friends this year.

However, tonight was TOUGH! I found myself fighting back tears throughout the entire program. It was just one of those nights where I wanted Brooklyn to be one of the "other kids" out of her chair....jumping around...yelling out the songs off key in her loudest voice possible. Don't get me wrong - she was ALL SMILES and she LOVES her classmates and had a great time tonight. It was me that was having the trouble. It was just one of "those events" that come along that sneak up on me like a slap in the face and makes my heart sad.

I am so proud of her and am thankful for the friends she has made and am thankful for the parents of those friends that have raised their kiddos to be loving, accepting, sweet kids - such blessings to Brooklyn AND to me!

Jackson

2011-05-17T10:58:00.002-04:00

Jackson is hanging out with us today - Brooklyn helped him save the princess on his new DS game before school this morning :) Yep, she LOVES her cousin!

Birthday pictures

2011-05-15T09:51:00.003-04:00

Her cousins sure do LOVE her!!

Check out all of Brookie's gifts - she was ALL smiles. It helped that Jackson and Jordan LOVED her presents too - she laughed knowing they were ALL HERS!!!

One of her favorites for lunch - Pizza Hut pizza

which goes perfectly served on DORA plates :)

It just did not seem right putting a SIX on there this year!

Cup cakes with gum balls on them for the boys!
I think she was laughing at our BAD singing during her Happy Birthday song!

Are you really SIX?!?!

2011-05-13T07:49:00.001-04:00

I can't believe that is has been six years since my life was blessed with one of the most amazing gifts I have ever been given! Brooklyn Ashleigh Butler - you touch my life in so many ways and inspire so many people. I hope you have an AMAZING birthday - you are truly and angel!!! Here is one from the day she was born......my little girl is growing up!

Mother's Day 2011

2011-05-09T14:54:00.003-04:00

Yesterday was Mother's Day and I had an AMAZING Day! We went to church, then out to lunch, had a nap, and then went for our first boat ride of the year with Kristin, Josh. and Grammy & Pappy. It was a beautiful day to say the least. Brooklyn and her cousin Jackson are the best of buddies!

We took some time to get a couple of photos outside too, I just can't believe how big Brooklyn is getting!!

Brooklyn and Grammy had a GREAT time on the boat!

My mom LOVES hanging with the kiddos! What not to love really?!

I know Mother's day is the ONE day I take the time to let my mom know how thankful I am that she is in my life - truth is - she should be told daily! My mom ROCKS! It is such a blessing to have her in our life each day. Brooklyn, Boston, and I ALL benefit so much from her love and encouragement! I love you mom!

Great Shirt

2011-04-28T13:08:00.000-04:00

Girl Power 2 Cure - Let's Cure Rett Syndrome Together

2011-04-19T06:40:00.000-04:00

I am SO excited to share the Rett Syndrome PSA that Girl Power 2 Cure created!! Please share this with others - help us educate the world about Rett!

Communication Bill of Rights

2011-04-18T11:54:00.006-04:00

I recently was made aware that there is actually a Communication Bill of Rights. As a mother of a disabled (non-verbal) daughter you would think I would have know about something like this. (Better late than never I guess!)
Anyway, as I began reading through the list I said to myself, "Everyone wants these things, I know I certainly do!" But then it hit me - and hit me HARD. Brooklyn doesn't always have these things....Rett Syndrome took them away from her. It is up to me to make sure she gets them back and keeps them, always.
Today as you make your choice for what you will have for lunch, take some tylenol for that headache, go to the bathroom, talk to your friends, or even decide its time for bed - think about Brooklyn - and the millions of kids and adults that are non verbal and can't always make these choices for themselves and then be thankful. Very, Very thankful and maybe, just maybe - help fight for those who don't have these things - fight for them.
Communication Bill of Rights: All people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence. All people have the following specific communication rights in their daily interactions. These rights are summarized from the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.
Each person has the right to
■request desired objects, actions, events and people
■refuse undesired objects, actions, or events
■express personal preferences and feelings
■be offered choices and alternatives
■reject offered choices
■request and receive another person's attention and interaction
■ask for and receive information about changes in routine and environment
■receive intervention to improve communication skills
■receive a response to any communication, whether or not the responder can fulfill the request
■have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times
■have AAC and other AT devices that function properly at all times
■be in environments that promote one's communication as a full partner with other people, including peers
■be spoken to with respect and courtesy
■be spoken to directly and not be spoken for or talked about in the third person while present
■have clear, meaningful and culturally and linguistically appropriate communications

From the National Joint Committee for the Communicative Needs of Persons with Severe Disabilities. (1992). Guidelines for meeting the communication needs of persons with severe disabilities. Asha, 34(Suppl. 7), 2–3

2011-04-18T10:12:00.002-04:00

I wonder what is going through these trouble makers (I mean angels) heads???

HELP!!

2011-04-11T11:19:00.003-04:00

I am sending this request out to all of you who love Brooklyn and want to support us in our fight for a cure to Rett Syndrome! Team Brooklyn is not even at $2,000! We have a LONG way to go to reach our goal of $10,000! I know we can do it but we need your help! Please - each ad every dollar adds up. Do you have $10 or $20 to spare this month? Girl Power 2 Cure will make sure that your money goes to good use. Please, consider a donation today! Click HERE to donate in Brooklyn's honor.

Kindergarten Kite

2011-04-08T13:39:00.003-04:00

All of the kindergaten classes traced kites to hang in the hallway. Sarah and Lauren (Brookie's Trine Univeristy buddies) helped Brooklyn decorate hers! She chose Dora for her "theme" and picked out all of the pictures for it. She loves when the girls help her with her school projects. I love all the smiles and giggles :)

Her Voice

2011-04-06T08:20:00.002-04:00

One of the hardest parts about Rett Syndrome for me is that Brooklyn lost her voice. I know she has SO MUCH to say but she can't physically say the words. Often throughout the day I wonder what she would say to me?
Would she rather have pancakes for breakfast?
Would she rather not wear either of the shirts I gave her to choose from?
Is she mad at me for something I said or did or maybe that I didn't say or do?
What was her absolute favorite part of school today?
Did anything happen that hurt her feelings or made her sad?
There are just SO many things.....
Yes, we have our yes/no cards and our communication boards and we try different computers(and are still trying to find "the" one) But NOTHING comes close to my daughter having her own voice to say whatever she wants whenever she wants. As you can tell - I can EASILY get completely bummed out about this topic but just yesterday a little boy encouraged me to look at things in a different way.
A mother of one of the kiddos in Brooklyn's class was reading one of her purple cards for the first time (her business is helping Team Brooklyn with fundraising!)
Anyway - after reading her card she went home and was asking her son about Brooklyn. My favorite part of their conversation went like this....
mom: "sweetheart, does Brooklyn talk?"
son: "no mommy, God has her voice"

WOW - "God has her voice"

I am a believer, have been all my life, but not once have I thought about God having Brooklyn's voice. Believe me, I have struggled with lots of things since Brooklyn's diagnosis including my faith - I have yelled at God, begged God, cried on my knees talking to God. During an interview for a magazine I was asked about my faith.
The truth is - I do not know where I would be without it. Yes, I am mad a God and I have asked alot of "why me, why my kids" but when it comes right down to it....God is Good and he has a plan for my life and for the life of my kids. I know that. On my bad days, it still hurts and I still yell but ultimately God is in control and I will continue to pray for understanding and of course pray that our cure for Rett Syndrome come SOON.
But for today, in this moment, I want to thank that sweet little six year old boy for reminding me that God has us all in his arms and yes, he has her voice.......

THANK YOU Fremont Middle School!!!

2011-04-02T08:25:00.004-04:00

Fremont Middle school was our FIRST local Dress Up 2 Cure event in honor of Brooklyn and they ROCKED! They raised $300.10 and had SO MUCH FUN!!!!

Thank you to my friend Greta and the student council for organizing this amazing day!

what an AWESOME bunch of students!

Fremont Middle school students are the PERFECT example of how much fun it is to Get Silly, Spread Hope, and Cure Rett Syndrome! Thank you for your support of Team Brooklyn and Girl Power 2 Cure!!

"Excuse Me"

2011-03-31T09:40:00.002-04:00

Sorry it has taken me a couple of weeks to post pictures of Brooklyn's head switch! The switch is mounted to her chair - the ball is placed on the left side of her head because she typically leans to her right (the start of scoliosis unfortunately we think) SO - she HAS to make her self lean her head to the left to tap the ball - this leads to less "accidental" tapping! The head switch is connected to her Big Mac switch which says "excuse me" (her friend Avery from kindergarten recorded it for her so it would be in an age appropriate voice)

SO.....this is HER version of "raising her hand" to get the attention of her aide, teacher, or friend! It is really pathetic that it has taken us this long to give her a way to get our attention but we have it now!

Once she has our attention, various communication board are used or even her yes/no cards in order to figure out what she needs/wants to say. Eventually I hope we can find an eye gaze computer system that will work just as well but for now....its a start!

2011-03-29T13:46:00.001-04:00

Grammy braided Brookie's hair for her....I think it looks BEAUTIFUL!!!

2011-03-21T10:00:00.001-04:00

Spring is FINALLY here!!! Enjoy it!!!

Easter Tree

2011-03-19T21:14:00.002-04:00

So....we have moved onto another season with our pink tree :) We asked Brooklyn again if she wanted to put her Christmas tree up or turn it into an Easter tree....THIS SMILE says it all! An Easter tree it is!

It looks like it might be part of her room for good now ;)

The results are in!

2011-03-16T14:03:00.004-04:00

Actually, the results have been in for about a week but I just have not blogged them, SO SORRY! Yes, we had our follow up appointment with Brooklyn's neurologist and ALL OF THE EPISODES came back clear - none of them were seizure activity! I was so happy that we caught both her "vacant spells" as well as her tremors on film during the 24 hour eeg.

What a huge blessing. Of course the spells ARE happening and when she is at school they are completely freaking out her teachers and aides. We have an appointment to see a pulmonologist in a few weeks - we want to check her O2 and CO2 levels and also have him help us write a "plan" for school. We have people wanting to call 911 and/or give her CPR which neither at this point are necessary at all but I DO appreciate the concern that he school has for her and of course realize they need a plan of care to cover their "behinds" as well.

SO....still more investigating to be done for now but we are SEIZURE FREE and I could not be more excited about that!!!

My girl loves horses!

2011-03-11T13:57:00.002-05:00

Yesterday at school Brooklyn was shown four pictures. (A princess, A nurse, A teacher, or a horse trainer) She was told to look at the pictures and of those four, choose (which she does using her eye gaze board) which one she would rather be when she grows up. I am not sure that she knows what a horse trainer is but I KNOW if there was an option to ride a horse for a living she would pick that one! LOVE HER! She has a student each day that is her "assistant" they help write her choices for her.

Casual For A Cause

2011-03-09T10:20:00.002-05:00

Want to help out TEAM BROOKLYN but not sure about the whole dressing silly thing? How about approaching your employer with the idea of a "Casual For A Cause" day! It is super easy to do, your co-workers would simply bring in a donation for Team Brooklyn in exchange for getting to "dress down" for the day! Interested? Leave me a comment!

International Women's Day

2011-03-08T10:35:00.001-05:00

"The only known risk factor for having Rett Syndrome is being female."

Wow. That is a HUGE statement.

A true statement.

ANY baby girl born into this world has an equal chance of having Rett Syndrome.

Today in International Women's Day - help our Rett girls find their cure so that they can become the amazing "Rett Free" women they deserve to be!

Donate in Brooklyn's honor today: http://www.firstgiving.com/dress-up-2-cure-april-2011

2011-03-01T11:49:00.001-05:00

Poor little beener.....she was up most of the night with a fever, she was shivering and moaning and it was just sad. Of course, she is home today and finally getting some rest.

DU2C 2011 - Team Brooklyn!!

2011-02-25T06:30:00.001-05:00

Team Brooklyn is THRILLED to join GP2C in our fourth year of Dress Up 2 Cure!!
We have again set our goal at $10,000 which I know is a HUGE amount. Each year I hesitate to set this large of a goal and each year my friends and family (and heck, even total strangers) ALWAYS come through for us!

The truth is, I can't set a price on getting my daughter back. Lets face it, research is expensive and without research and organizations like Girl Power 2 Cure Brooklyn might be "trapped" in her body forever!

SHE DOES NOT HAVE TO BE! Most of you know that in 2007 Rett Syndrome was REVERSED in an animal model! Now in 2011, researchers all over the world are working daily to transfer those results into viable treatments and a CURE for our girls.

There are hopes that within five to ten years we will have our cure! However, organizations like GP2C and these researchers need our support and that is why we have joined forces with GP2C!!

PLEASE, without your support we will not reach our goal, imagine in 10 years Brooklyn will be fifteen. What I wouldn't give to have a CURED little girl headed into high school!

To make a donation to our team: http://www.firstgiving.com/dress-up-2-cure-april-2011

Our EEG Experience

2011-02-24T07:15:00.005-05:00

Monday morning we were at the hospital BRIGHT and EARLY for Brooklyn's 24 hour video EEG. Of course with all of the snow and ice our typical 30 minute trip was an hour but we made it safely!
Brooklyn has been having some "vacant" spells - I am pretty sure that it is just "a Rett thing" but we want to be sure. She has had some at school that I think might actually be some breath holding episodes but of course when a child is not breathing and the lips turn blue it tends to worry people! Can't say I blame them!
So, now the EEG is done and so we wait.....will let you know when we get the results. Until then here are some pics of our experience.

She was ALL smiles once they were done messing with her and she finally had her "princess crown" on.She actually slept quite a bit. I think she was a little bit stressed, plus turns out she was getting sick :(
Here we had 3 more hours to go -
The CRAZY hair after everything was off!
After 30 hours in the hospital she was OVER IT!

Then the REAL fun.....getting all that goopy glue out of her long, beautiful hair!
We survived the experience and pray that our results show NO seizure activity. Rett Syndrome tortures her poor little body enough as it is we really hate to add this to the list too. Thank you all for your encouragement through this process, you all are great!

Trip to New York!

2011-02-23T11:19:00.000-05:00

These pictures/video include three SUPER inspiring women that I am so very thankful and proud to call my friends. Terri, Ingrid, & Steph - thanks for the AMAZING weekend!
Rett Syndrome - with women like this fighting you.....you do not stand a chance!!!
(Thanks to Ingrid for putting this great video together - YOU ROCK!)

post # 1001

2011-02-18T09:02:00.002-05:00

At the beginning of my blogging life...... I just realized the last post that I typed was my 1,000th blog entry. WOW! What a journey it has been for sure! Thank you to ALL of you you have become my online family - without your love and support, this road I am on would be a whole lot tougher!

I chose this picture for the post because this was sort of the beginning of my loss....this is the last photo I have of Brooklyn feeding herself - before Rett Syndrome attacked our world. I suppose Rett Syndrome is the reason I began this blog - a form of therapy for me in a way. It has become so much more for sure. I have be introduced to amazing people via this blog - some in the Rett world, now the Down Syndrome world, others within the special needs community and also there are just "those people" who stumbled across my blog almost on accident but have made such an impression on my life. SO....thank you - to all of you who read my blog and support me daily, those two little words in no way express my gratitude for sure but know that if you are reading this, than chances are you are one of those people - and I love you!

Dress Up 2 Cure 2011

2011-02-15T11:20:00.003-05:00

I am looking for 11 schools nationwide to be a part of Team Brooklyn in this year's 2011 Dress Up 2 Cure Campaign! Are you a teacher, principal, or even a mom that is willing to ask your child's school to participate? Leave me comment and I will get back in touch with you! It is a SUPER fun day - so come on.....help me get silly, spread hope, and cure Rett Syndrome!
To read a little more about how your school can get involved: http://www.dressup2cure.org/schools-2011.html

(we are looking for schools to host a day throughout April!)

2011-02-11T11:08:00.002-05:00

Brooklyn was PUMPED for her Valentine's Party in Kindergarten today - she even woke up EARLY! Which is NOT like her on a school day! She used her stamp to sign all the valentines and took in Miss Weber a box of Hershey chocolates:)

Homemade Valentine's Ornaments

2011-02-10T10:38:00.004-05:00

Grammy had the GREAT idea to make dough ornaments for Brooklyn's tree. Brooklyn was PSYCHED for this project! She helped with every step of the process!

and was pretty proud of herself!

She wanted pink -i think she was not sure that this red was gonna be pink!

but it was ;)

rollin out the dough

she picked out which cookie cutters to use

After letting them dry for what seemed like forever...Sarah and Lauren helped her decorate them all yesterday afternoon.

Grammy bought all kinds of great things to stick on them!

She helped the girls pick out the perfect place to hang each one!

The tree looks better than ever now!

Brooklyn is proud of her job well done too!

I'll Fly

2011-02-02T10:44:00.003-05:00

Canadian gospel singer, Dana Marie, has a special little friend at church. Her name is Anna and she is just three years old. Anna cannot run, skip, climb, or even speak. She is "trapped" inside a body that will not work. She is trapped by Rett Syndrome, just like my Brooklyn.

Dana Marie wants to tell Anna's story to the world. The third track on her debut album, I'll Fly, speaks from Anna's point of view....the song is nothing short of AMAZING. I downloaded it and can't stop listening. As I listen, it is like Brooklyn is singing this song to me.

The song is only 99 cents to download and I promise you will not be disappointed - in fact you WILL be inspired! Also, Dana Marie will be donating 50% of the proceeds from the sale of I'll Fly to Girl Power 2 Cure through THIS LINK on the Gp2C website!

Download it today!

Writing Workshop in Kindergarten

2011-02-01T12:24:00.004-05:00

Ms. Weber has started Writer's Workshop in her kindergarten class. I have to admit....I was a bit nervous to see how Brooklyn would be able to participate. Well, again leave it to Ms. Weber to adapt! She asked me for a list of possible topics (and gathered some of her own from this blog.) She then gave Brooklyn choices of what she wanted to write about (via eye gaze.) She chose horses.
She then cut out words and statements that could be read to Brooklyn for her to create her sentances. She also provided pictures for Brooklyn to pick from to use in her book. Brooklyn's aide helped her with her choices and we ended up with this FANTASTIC book!

Notice anything different???

2011-01-31T15:56:00.001-05:00

YEP! Brooklyn lost her FIRST tooth today at school! I feel bad....I did not even realize it was loose. They said it freaked her out a bit at first but she is cool with the idea now.....we have been making a HUGE deal out of what a big girl she is!!!

The View

2011-01-29T21:15:00.005-05:00

I want to make sure everyone got to see the Rett Syndrome segment on The View!

It was such an amazing experience getting to spend three days in New York with the Gutierrez Family. They did a fantastic job sharing their story about Rett Syndrome on The View! I also was able to meet Monica Coenraads of RSRT and hang out with my GP2C girls: Ingrid Harding and Terri Vejrosta...which is ALWAYS a great time!

A little less important part of the day was my "appearance." I was chosen to do a segment "lead in" during the commercial break with Whoopi.

Brooklyn thought it was pretty cool to see her picture on my sweater on TV! We recorded it so we were able to show her over and over ;)
It was truly a wonderful (and way to short) three days!

Rett Syndrome on THE VIEW!!!

2011-01-28T09:30:00.002-05:00

I want to encourage everyone to tune into The View today (or set your dvr's!) My friends and fellow Rett parents, Stefanie & Manny Gutierrez and their amazing daughter Anna are sharing their story about Rett Syndrome today! She shared THIS BLOG POST yesterday and I want to share it with you. I am so PUMPED.....National television exposure for Rett Syndrome! WOOOHOOOOO!!!

18 and 19

2011-01-20T21:56:00.003-05:00

In Kindergarten this week they were working on the numbers 18,19, & 20. They of course use hand over hand at times throughout class. I thought it was creative that they had her use her stamper 19 times for the number 19 :) The stamper is how she puts her name on all of her school work. It is like this ONE listed on RettGirl.

Valentine Tree

2011-01-17T09:13:00.003-05:00

Brooklyn LOVES her pink Christmas tree. We still had it up even though it is mid January! This weekend I started thinking....why don't we KEEP it up a bit longer. Grammy got her these great Valentine "ornaments" for the tree, we took off the "Christmas" ones and....now we have.....this BEAUTIFUL Valentine Tree! We are now set for another month!

Hair accessory organization at its best

2011-01-13T11:44:00.002-05:00

Leave it to Grammy to come up with THIS fantastic idea! The lid opens up for her rubber bands.

The case opens up for all of the bows and clips!

It was a perfect Christmas gift for my little girly girl!

wii bowling!!

2011-01-10T11:04:00.003-05:00

Team Brooklyn was ready to take on Jackson in wii bowling!

Brooklyn getting ready to bowl a strike

Here is a picture of Brooklyn's "mi" character....she needs a better partner than mommy probably...we only scored 90 points.

I had to post this picture of Brooklyn and Boston sitting on Grammy & Pappy's blanket :)

2011-01-08T10:27:00.002-05:00

I wanted to share an example of how amazing Brooklyn's Kindergarten teacher is. They are working on numbers and this how she adapted their work for Brooklyn. (see her instructions on the top of the page.) THANK YOU Miss Weber - you ROCK!!
All of the ones that she answered, she answered correctly. There were three that she did not look at any of the choices that she was given. Now we will of course go over those numbers with her today. I LOVE it!!!

Happy New Year!!

2011-01-02T15:43:00.003-05:00

2011 is officially here!
I have to say that I am ok that 2010 is behind me, it was a rough one to say the least! However, it IS a new year...full of new beginnings...new possibilities! One thing that has not changed for me as I head into the new year is my passion for funding research for Rett Syndrome.
There has been so much exciting research throughout 2010 that I have NO doubts that 2011 is going to be a HUGE year for us as well. As January is upon us, GP2C hopes to start off the new year in a HUGE way and raise $11,111 in 1/11!! My goal is to personally raise $1,111 in honor of Brooklyn this month.
I am asking those of you who read this blog to donate $1.11 - that is NOTHING.......we are talking LESS than a cup of coffee here people. You may be thinking that your donation of a little over a dollar will not do much. YOU ARE SO WRONG. Think about your dollar adding up with all my other friends dollars!!! Of course if you want to do more I would love to see some donations for $11.11 or maybe even $111.11 come in :) I was looking at my facebook profile today....I have 916 friends. Just think...if they each gave a $1.11 I would be OVER my $1,111 goal for January!
I am starting things off....I just made my donation of $111.11 in honor of Brooklyn....will you join me? CLICK HERE.

Making Peppermint Bark

2010-12-29T15:27:00.002-05:00

I keep forgetting to post these pictures of Brooklyn and Grammy making peppermint bark....she loved it!!! Here she is beating up on the candy canes :) Busted...."testing" the white chocolate to make sure it tastes ok!

Mixing in the crushed candy canes...

Dumping it out!

Spreading it out on the pan to cool!

DONE! I think she was pretty proud of herself!

The hard part was waiting for it to cool to have a piece!

Crazy Pinzs

2010-12-28T15:41:00.006-05:00

Kristin and I took the kids to Crazy Pinzs today for some glow bowling! The boys were great helping Brooklyn.

Jackson.....the big winner today!

Jordan getting ready to roll a STRIKE!!

No one wanted to take a break for a picture with mommy!

5 days left to help GP2C in 2010!

2010-12-27T15:20:00.002-05:00

Katie is one of those young ladies that is an inspiration. She made 500 cupcakes to raise money for Rett Syndrome Research!!! I can't thank her enough! That is what Girl Power 2 Cure is all about. Girls helping girls! To read more or to make a year end donation to help us in our fight against Rett Syndrome click here!

2010-12-26T11:06:00.002-05:00

Aunt Kristin and Uncle Josh got Brooklyn this GREAT Barbie guitar! It can play songs on its own or any touch to the strings and it plays. Brookie LOVES it....and her cousins think it is a pretty cool toy too! (oh, and the pretty brown and pink heart blanket too!)

Brookie also received a new portable DVD from mommy....which BOTH kids (and Uncle Josh) seem to love. Along with a new Wiggles movie from Santa- which I thought we had them all but I was wrong!

Uncle Josh was showing Brooklyn how it is done :)

2010-12-24T08:59:00.000-05:00

Mommy and Brooklyn before Christmas Eve service.

2010-12-22T17:09:00.000-05:00

Brooklyn, Boston and I want to wish all of our friends and family a VERY Merry Christmas! I also want to thank all of you who faithfully read this blog and continue to show us so much love and support! It means the world to me. Please continue to pray for us as we look forward to 2011 and a year of lots of new beginnings!

2010-12-20T14:50:00.002-05:00

Brooklyn and Boston hanging out....I adore these two kiddos so much!

I know this is a little blurry but her face was just so sweet that I had to post it. You all are used to the "Rett hands" always moving anyway, right?!?!