Our Halloween Miracle

Here it is folks - that's right, Brooke SMILING on Halloween night! For those not in the know - Brooke historically hates Halloween (and I have the pictures of her crying every year to prove it). This year started out a little rough (thanks in part to Isabel's meltdown at the suggestion that we leave our neighbors dog, Bently, and continue on for more candy) but it was a fairly quick recovery, a short nap in her completely decked out ride and the remainder of the evening a happy little witchy-poo!


The Chicken's favorite portion of the night seemed to be handing out candy with grandma and great-grandma. She was in charge of the suckers.

Overall one of our most successful Halloweens to date!

18 months

Just wanted to share a few recent pictures of Isabel. These were taken to celebrate reaching the 18 month milestone. And I'm happy to say that Portrait Innovations only got half as much money out of me as the one year mark.

First we have the traditional wicker chair/flower picture. Unfortunately, that was as cute as things got for this outfit. Someday I will learn to tell them to pass on the lame props.



Here is one taken in a dress we purchased while we were in Guatemala. I was trying to guess on the size - too bad we now have a sundress that fits perfectly in October. And rest assured I have already heard about the black background - nobody likes it and I'm the one that told them to use it. I will defend my decision by saying all of her one year pictures had a white background, I thought the dress would look good against black and the kid is cute, she'll look good no matter what color background is behind her.




Here's a sneak peek at this years Halloween costume -



And finally I just had to include this one. It is safe to assume she was saying "booger" at this moment and no I didn't purchase any of these -

Our Friend Dakota

I'm sure everyone that reads this blog is used to hearing about (or living with) Rett Syndrome. But today I wanted to take a minute to introduce everyone to our friend Dakota and her family. Dakota is a classmate of Brooke's and is battling Tay-Sachs disease. Never heard of Tay-Sachs? I hadn't either until I heard about Dakota. So I wanted to pass along an email I received from her mom and dad with some information and links to the Cure Tay-Sachs Foundation website.

Please be sure to watch the video - it's very powerful. And for those of you that feel you have a vested interest in Brooke or Rett Syndrome and have committed your donations or fundraising efforts to that cause please think of this - medical research committed to finding a cure for one disorder has the potential to help many others. If you spend a little time on the website you might be surprised by some of the similarities shared by the two disorders. You never know how all of this will ultimately connect.

One thing I do understand is how important it is too make people aware of these "unheard of" disorders. Dakota's parents have done an amazing job getting the foundation off the ground and getting the word out. I'm so proud of this family - they really do inspire me to think of the difference just one mom, one dad and one sweet little girl can make in this world. I know I can take a lesson from that, I'm sure we all can.


Dear Friends,

As many of you know our beautiful little girl Dakota continues to battle Tay-Sachs disease. We have created a video to introduce the world to our very strong little girl. Dakota is now 8 years old and was diagnosed with Tay-Sachs disease just over two years ago. Tay-Sachs is a genetic disease that has no treatment or cure, and is ALWAYS fatal in children. Dakota risked her life nearly two years ago when she went through a very painful and complex cord blood transplant where all her blood was replaced with new blood, with the hope of eliminating the disease. The transplant may have helped, but the disease is still there. Dakota has been nicknamed the “Hope Child” by other Tay-Sachs parents because of her courageous battle to beat this horrible disease. But the clock is still ticking….

We have medical specialists all over the world that we are in constant communication with that have assured us that the cure is within reach! The challenge is the funding necessary to convert theory into clinical application. We have become involved with the Tay-Sachs Gene Therapy Consortium that has created an international team of experts dedicated to converting hopeful animal models into useful human clinical trials. We have no choice but to take matters into our own hands and raise the monies needed to potentially save the life of our daughter and her many terminally ill friends around the world. We need to find a cure for this disease so future generations of children like Dakota and families like ours don’t have to endure this agony.

With the help of our family and friends, we have started a fund raising campaign called “Dakota’s Dream,” designed to raise money for the Cure Tay-Sachs Foundation (which is a 501(c)(3) tax exempt foundation). We are declaring November “Dakota’s Dream” month, where corporations, schools and churches from all over are collecting money on our behalf. On Saturday, November 24 we are organizing children of all ages to collect money in their neighborhoods to support Dakota’s Dream. We hope to have 1,000 kids each collect $100 on this day. Hopefully we will surpass that number of kids helping other kids.

Please take 5 minutes of your valuable time to watch the DVD that was made to give you a small understanding of the magnitude of the situation. Yes, we need money. But more importantly we need to educate people about Tay-Sachs disease. After you view the video, please feel free to pass this e-mail along to anyone and everyone you know. The disease is found in every part of the world, among all races, religions and genders. This is one disease that we CAN and WILL find a cure for in the next few years - but only with your help.

Thank you for taking the time to listen. Please watch the video and visit our web site for further information about Tay-Sachs disease and how you can be a part of Dakota’s Dream on November 24, 2007. Thank you and God bless.

Link to Dakota’s Dream video: http://www.curetay-sachs.org/dream.shtml

Link to Cure Tay-Sachs Foundation web site: http://CureTay-Sachs.org

Ken and Julie Bihn
Olmsted Falls, Ohio

Hey it's only been two months!

Finally got around to loading the pictures from Brooke's first day of school. As you may or may not know, I wasn't actually there so Grandma took the honors. And she did a fabulous job - how darling does Brooke look in her cool shades and rockin' apple shirt! The pants were kind of a funny story though. I had forgotten to lay out the very specific first day clothes before I left so I called mom and just told her it was the apple shirt and there were denim capris that went with it. After I was back I was organizing Brooke's closet and realized the capris still had the tags on. We hadn't had the pictures developed yet (Grandma still has a film camera if you can believe it!) so I just assumed it was too warm for the pants and the executive decision was made to go with shorts. Cool. When I did pick up the pictures I was all "oh what pants are those?" - only to realize that Brooke was wearing a pair of Isabel's jeans. Yes, those are supposed to be full length pants on an 18-24 month old. I suppose this is proof that Brooke might just be a little too skinny!

STOP THE MADNESS!!!

It seems a public apology, or maybe just a clarification, is in order. A few days ago I posted a list of Isabel's words she is saying. One of them was Connie (aka - World's Greatest Aunt). I mentioned how each time the phone rings Isabel says Connie which is funny because she rarely calls.

Maybe my choice of words could have been better but dear, sweet, wonderful, fabulous Aunt Connie seems to have taken some offense to the comment and has since called EVERY SINGLE DAY. Now I certainly don't mind a little daily chat with the WGA (remember that's Worlds Greatest Aunt) but I don't want her to feel that she has to call out of obligation.

Maybe what I should have said is that Connie doesn't really have reason to call all that often but we are thrilled every time we see her name on caller ID? Better? I guess we will find out tomorrow during the WGA calling hour.

A face only a mother could love, right? A little bit sticky but well worth the five minutes I was given to clean up after breakfast while Isabel ate yogurt with her fingers. No pleading "uppie", no grabbing dirty knives out of the dishwasher, no climbing onto the table, no trying to eat "leftovers" from the floor. Yep, definately worth a quick wipe down with a wet paper towel.

How much does this kid love to swim? No school today so we went a little later which gave Brooke the chance to swim with her new little buddy, Kevin. She was quite smitten. There was some singing together and pushing a ball back and forth to one another (something Brooke has been doing really well in the pool lately - yay!). And in the end resulted in some serious tears when it was time to leave (or maybe it was because I didn't actually follow through on the idea of leaving Isabel behind in the play room).

Snacks and Sisterly Love

So how cute are these two?! Isabel was sitting at the table having a few pretzel fish crackers and juice and Brooke decided she needed in on that action! It's pretty amazing to me on both sides really. The fact that more often than not if Isabel is eating at the table and Brooke is not, that Brooke knows she just needs to stand by and her sister will share. And the fact that Isabel totally shares with her - in a gentle, not jamming-20-crackers in-her-mouth-at-a-time kind of way.

We thought long and hard about whether adding to our family was the right thing to do. Would it be fair to Brooke, to a sibling, could we handle it? And although I will admit to a few "what the heck was I thinking" moments so far, overall it's been a good thing. There is definately something about watching another kid do it that gets Brooke more interested in things. I can't even tell you how many times I tried to get Brooke to sit and try to color with her little dot markers with me and every single time I felt like I was forcing it on her. Isabel wants to color and guess who's right there with her. And these little moments of being the helper are nice to see in Isabel. I'm sure there will be times Isabel is going to be tested having Brooke as a sister but I guess my hope is that in the end it's the acceptance, patience and compassion that she really takes away from it all.

So if fish crackers and juice are any indication - I think we're headed in the right direction!

Chatty Cathy

I'm back again! And it was nice to see a comment from another Rett mom that I didn't even know read the blog!


In an effort to make the reporting of this blog fair and balanced, today will be all about Isabel. Specifically all the talking. You may have noticed that my daughters are about as opposite as opposite gets and so it only makes sense that non-verbal Brooke would be complimented by never-shuts-up Isabel. But believe me I'm not complaining. So as she reaches the 18 month mark here is a list of current words (if significantly different the "Isabel pronounciation" has been included):



Mommy
Daddy
Brooke (can be easily confused with book)
Book (see above)
Grandma (ama)
Connie (although she rarely calls - every time the phone rings it's Connie)
Tom
Julie (dewy)
Dog
Puppy
Kitty Cat (kit cat)
Neigh Neigh (this would be horse - it's the only one that is referred to by it's sound rather than name)
Cow
Bird
Fish (fishy)
Duck
(she also makes all the appropriate animal sounds to go with each - well except the fish)
Pancake
Banana (nana)
Yogurt (ogur)
Juice (all drinks are "juice" right now)
Hot dog (dot dog)
Chicken
Cracker (kaker)
Applesauce (abus)
Bean
Dora
Elmo
Potty (sometimes sounds like buddy)
PeePee
Stinky (tinky)
Booger
Color (colur - comes out with this weird, almost French accent)
Diaper (diapur - same thing with the French accent)
Crayon (can)
Bubbles
Push
Bus (there's a little lisp on the s)
Shoes
No (this is the verbal answer to everything, if the answer is yes you get a head nod)
Spoon (poon)
Pumpkin (punken)
Ball
Flower (fower)
Open
Broken (boke in)
Play (she's just starting to get the "L" in there - it's pretty funny looking)
Baby
Blanket (bankit)
Brush (sounds very much like bus)
Train (tane - and corresponding choo-choo)
Plane (pain)
Messy
Dirty
Up (uppie)
Night night
Kissing
Bottle (baba)
Nose
Eyes
Uh-oh
I don't know (I no-no)
All done
Shopping (dopping)
Purse (pursh)
Corn (orn - only in referrence to our cornstalk decoration outside)
Swing (hwing)
Apple
Pretties (dittys - this means jewelry)
Swimming (whimming)
Hi (as said to every person that walks by every place we go)
Bye (as in goodbye_
Bye Bye (as in we're going someplace)



And my new favorite:

Awesome (awthummmmb)


I'm sure I'm forgetting some (and I'm sure Mom will add them in her comment!)

The Golden Ticket

Okay so I haven't gotten around to making it pretty but at least I'm posting something!

One of my many struggles when thinking about all things Brooke is the struggle to find GOOD therapists. We have our one shining star, Miss Karen, who swims with Brooke every Friday. All others have fallen someplace between okay and bad. So I finally had the brilliant idea, if I do say so myself, of actually asking Karen if SHE had any good referrals. And she did. Glenna Greenwald, Speech Therapist Extraordinaire.

Now to be fair we haven't even seen Glenna Greenwald, STE yet but I have high hopes. Why the high hopes you ask? Because 1) Miss Karen, Swimming Instructor Extraordinaire recommended her and (this is big) 2) because when I Googled her name to find contact information, the first thing that came up was a newsletter article about her work with a little girl named Maya who has, drum roll please, RETT SYNDROME!! Just the thought of not having to start at Rett Ground Zero with another therapist sends shivers down my spine!

Glenna did call me yesterday and we chatted about Maya and the other THREE Rett girls she is currently working with. And from that ten minute conversation I feel pretty confident that this lady gets it and, most importantly, she is excited about working with Brooke. So hopes are high and now we just need the lovely Nadine to call and actually schedule us.