She likes to call this rocking out. These are the bars that we put up in our house for her to move around. She uses them some ... particularly to 'rock out'. I had to post of FB the other day what she said..."mom, I had a dream last night. I was at school, and I crossed my arms like this, and I walked out of my walker". ugh. So, sweet! I told her that I have had the same dream! Some dreams come true! We will keep hoping and praying!

It's the little things that count! There are a few things that stand out about these pictures...1 - MILESTONES. YAY! She has graduated to the big girl swing. Do you have any idea how tired we were of the baby swing? - very!). So, she loves swinging on the big girl swing, and SHE CAN PUMP all by herself! Agh!! So cool! Another thing to notice about the pics - I CAN TAKE them (and I am not holding her)...meaning, I am NOT IN the picture and she is not on her knees. This is also a milestone of sorts. In the last year, Reese has become strong enough to do more things... ALL by herself. I mean, not too many, and very thought out activities, such as the jeep. BUT, I WILL TAKE IT!! This is FREEDOM for Reese (and me). She is also still LOVING her donated tricycle...she rode it to the park to swing, and back...mostly, all by herself!

We have also gotten into doing activities again lately. Swimming and adaptive sports (though I am still on the field with her), she DOES think she can play soccer now. And, thank you Ann, from Starfish swim school, for reaching out! Reese's swim teacher thinks she may be able to swim! He says it's all about balance IN the water. While this may be challenging outside of the water - she CAN float on her back ALL BY HERSELF. All of this is an amazing reminder how important these activities are to build children's confidence and to 'getting involved' in the world! It is easy to feel isolated in our world. But, we are coming back to the world! Now we just need to get her back on the horse!

And finally, I just want to say how thankful I am for Reese to have friends and relationships! She loves her friends (and they love her), and this IS one of our newer activities that has brought us such happiness and laughter!

School is also still going fantastic! Writing is VERY difficult because of her dystonia, but SHE CAN form letters...though not pretty...SHE CAN FORM LETTERS!! SO PROUD! She is the super star this week at school - she REALLY is a super star!

XO to Reese, friends and family!

Reese's walker was taken from our driveway this past Saturday. UGH! So annoying, sickening and frustrating. Well, Tim and Mandy Moore saw this story on 9 news and donated their son, Brody's, old walker, to Reese, to use, until we get a new one for her. Thank you Tim, Mandy, Brody and Tatum! We are SO THANKFUL! There were many people that reached out, and offered to help - thank you for being so thoughtful.

Besides this, not too much new. OH, no thats not true! We did go to Pennsylvania to the Clinic for Special Children for Reese's annual appointment AND to go to their annual auction. Of course, the appointment was great! Dr. Strauss and the clinic is amazing! They said Reese looks great and we are trying to change up her formula/medicine. And the auction was facsinating. 8000 people - a lot amish - as ga1 is common in the amish community. There must have been 100 horses and carriages and Dr. Strauss was right - peanut butter whoopi pie - delicious!!

Kindergarten is still going great!

Next on our list - adapt this house, or get a ranch house. My arms are tired! Will that really help or change though? I will still be lifting a lot...I think I am just hoping that maybe it would be a little less...and therefore, arms a little less tired.

We are all good though. I feel like we are settled in to our life right now - minus our perfect walker. Of course, now that it is gone, I realize how perfect her walker was - and how much we used it! ugh.

SUMMER 2011 - 5 years old! New bike. Cousins. The beach. Kindergarten.

Summer 2011 -

What can I say? It's been a long 5 years and we have learned A LOT! Probably more than we have ever wished. Reese continues to be an amazing little girl, with a spirit about her that is truly unbelievable. One would think that her physical disability would dampen this - but, it may be the reason she has the spirit that she has and the amazing outlook that she does. She has had to make adaptations to the world that most of us (me included), would never know how or what to do with. She has done this with grace, courage and determination - all while constantly smiling, laughing and loving every minute of life.

This last year has been an incredible learning lesson. Balance. Acceptance. Slowing down and doing what we can. Not trying to keep up, or be frustrated with what we can't do. Taking a break from things we don't want to do. And remembering that we may have to do things differently and that we may have to do things that we may not want to do.

So, what have we done? Well, sort of not much, but maybe a lot bc of making emotional decisions about what to do / what not to do? We have taken a break from therapies. We take SLOW walks around the block pushing a way too expensive baby stroller. We have installed railings in our house. We have learned to create and enjoy activities that we wouldn't have thought of (summer sledding). We received an adaptive bike from 2 angels foundation. We have purchased a bike to allow the whole family (yes, Georgia too) to go on a fun ride. We have had more play dates - which is a joy! And, Reese turned 5 and started kindergarten. agh!

So, new milestones of sorts...but also just continued acceptance, adaptations and love and joy, no matter how hard it is. But, I have to say - it IS hard. I don't know if I can say it has gotten any easier. My cousin asked me this, and it was a hard question to answer. In some ways, yes. She has more words and can speak more clearly (I think). She can move around in her own way better than she has ever been able to. She can play more easily by herself. And she can play with friends! These things have certainly made it a bit easier. But, she is also getting heavier, and my arms are back get tired and strained.

But, thank goodness for family helping out! Reese loves everyone! But, especially her grandparents (and her aunties...of course)! We couldn't do it without everyone's love and support. So, thank you! xo

Will keep you updated to how Kindergarten is going. She is going to Bromwell. They have a program for kids with physical disabilities. So, I am thrilled about this. But, it is still hard to leave her knowing how much help she needs doing so many things. But, I love that I was most nervous about PE, and guess what her favorite class is? Yep - PE. So, what do I know?

TRANSLATION: "Thank you for coming to the benefit! Thank you for your love and care! We raised $12,000! Woo hoo! Bye. Love you. "

MAY 26th - 2ND ANNUAL GA1 FUNDRAISER @ Cervantes - the other side 7 to 12
Donate as you wish - All proceeds go to the clinic for special children. Also, silent auction!

Watch this video on the clinic for special children -

http://www.youtube.com/watch?v=4qAUy6oYH8M

I asked Dr. Strauss (Reese's doctor at the clinic) what their goals are for money raised through fund raising?
Here is his answer:

"The most important short and long range goal is to build a "Research and Endowment Fund." We do not rely on federal grants here because these do not generally flow to "rare" diseases, and they end up being quite restrictive in scope. Thus, we are trying to build a Fund that will be used to generate annual income from interest (about 4% annually) to support clinical research into rare disorders, especially GA1 and MSUD, the two most common problems we see here the Clinic. For this fund, we are driving to a goal of 5 million dollars over 5 years (1 million per year). The final goal (5 million) would generate about 200K in annual research income, which is about what we need at this time. The short range goal is for "exome sequencing", and new DNA analysis technology that will greatly improve our ability to diagnose genetic disorders and will also give us the ability to study things like "modifying genes" in GA1. We hope to purchase an Ion Torrent "Personal Genome Machine" for this purpose (you can check this out online). F&M College is funding 55K of the total cost, which is 100K, and we are seeking 45K of matching funds from other Clinic supporters".

Go HERE to donate to the Clinic for Special Children online.

Or, make check to: the clinic for special children

and send it to us - and we will send it on.
591 South University Blvd. Denver, CO 80209

THANK YOU! THANK YOU! THANK YOU!