Strollathon for Retts

This girl was so cute! I had to get a pic of her getting her face painted!

River beating the balloons with a stick! Such a boy!

Our Angel and star for the day! We love you lanny bug!!

There were Rett Facts posted all over the park. This was the year Chelan was born. We finally found out that she had Retts when she turned 4, because it was so new and unknown.

Look at these beautiful girls!!

Chelan touching the Hedgehog

The girls got to feel animals like hedgehogs!

This is where River liked spending his time :)

Seeing all the animals the trainer brought.

Lining up for the Stroll!

Watching a video of all the girls with Retts in Utah. (There are about 33 in Utah)

Mom, Trevor, Me, River , Chelan, & Dad came later.

This girl has influenced all of our lives in such an amazing way!

This morning we attended the first annual Strollathon for Rett Syndrome in Utah. It was held at the Nielsen Grove Park in Orem. The weather and the park were beautiful! It was so amazing to feel of these girls sweet spirits. They were all so beautiful! Our own group for Chelan raised over one thousand dollars!! Wow! We feel so touched by the love that has been shared by our friends and family. You are all so amazing to help us with this amazing cause. As a whole group that attended we raised over eight thousand dollars that will be doubled by an organization! We are so happy that funding is going to find a cure. You can still donate on our fund raising site until December (www.firstgiving.com/chelanangel.com). These girls deserve a cure and they are so close to one!! They had really fun events going on as well, an animal trainer, a face painter, crafts and treats. It was all put together so well! It was a wonderful event to be apart of and I hope that I can be more involved next year.


PS. We so appreciate your continued support in voting at Pepsi Refresh, so that Retts can get 250 K in funding this month!! (Link to vote is at the top right of my blog)

I have tried to post a video of the stroll, but it isn't working right now so I will post it later.

Mountain Fun!

The last moments with the binks!

Tony relaxing and enjoying the view from the deck

We are really down to the countdown with the binks now!!

Binks was given to the Deer Valley Mountian. Lunch on top of the mountain.

Cutest boy alive :)

Hangin' with daddy

Heading up the Coaster! SO FUN! (video below)

He thinks he is really cool in his new kicks!

We went to Park City again this year with my family. It is always such a relaxing and fun time! The weather was really just perfect while we were there. Things we did included:
Celebrated my parent anniversary
Celebrated Trev's Bday
Watching movies
eating at wonderful restaurants
riding ski lifts
riding the alpine coaster
sleeping in
shopping
etc.
We were sort of forced to give up Riv's bink when he decided to chuck it off the ski lift! It was the only one I had brought so he had to go cold turkey with no binks. Every night was ROUGH trying to get him to bed without it, but I guess I just have to move forward now without it. I just hope it gets easier. He gets so enraged about not having it that he even head butted me right in the lip and gave a nice fat lip! Lovely :)
We are so glad my parents invite us to go every year and always have so much fun! I think Tony was especially grateful this year for a break from his rough work schedule :)


(This is a video of the Coaster! I was laughing so hard I was crying and couldn't breathe!)

Strollathon for Rett Syndrome!

My sweet Sister Chelan

Chelan & Mom

Chelan & Riv

Most of you know that my older sister (by only 11 month!), Chelan, has Rett Syndrome. Not a lot of people have heard of Rett Syndrome, some of that has to do with the misdiagnosis of the disease, as Autism. The truth is that every 5 hours a girl is born with Retts and it is the leading genetic cause of severe impairment in females. Girls that are born with Retts, are born as healthy beautiful babies! It is only at around the age of 18 months that something begins to change and the disease begins to take hold. I can only imagine how devastating that must have been for my parents to have this healthy girl and then to start seeing signs that something is wrong and not know why.
Chelan like any healthy child started talking and walking. It was around that 18 month mark that things started to back track. Rett Syndrome takes away the ability for the child to speak, move their limbs freely, control their bowls, control their breathing and often results in scoliosis and seizures. My parents didn't find out for years that Chelan had Rett Syndrome. She was misdiagnosed as Autistic as so many are. The painful thing about Retts is it slowly takes these abilities of the child away. I remember when we used to get Chelan to, with much effort on her part, say words and how she would light up in excitement that she was able to talk! Overtime that was slowly taken away from her. Chelan has so much light and energy in her that over time have been masked by her disease and medication she is on to control her seizures. I want everyone to know that that is NOT Chelan to be unresponsive and seem almost empty. Chelan is a girl more full of life then anyone I have met! She is a total prankster and loves a good joke. She touches people with her loving nature. She loves bumpy rides and roller coasters (yes she has been on several!) She is AMAZING in her patients and is one tough cookie!! She rarely cries (even after invasive scoliosis surgery putting a rod down her spine). My point is, Retts and her medications have taken my sister away and hidden her, sometimes I get a glimpse of her as her meds are starting to wear off and there she is again MY SISTER! It reminds me that at times it may be hard to see her through her exterior, but she is there and wants to be apart of things just like everyone else. I love her more then I know how to express and can't wait until she is freed from her lonely prison and we can talk and laugh again together as sisters. I don't mean to say these things to make you sad or feel bad. I just want people to know who my sister really is and that if you give her attention you will see her in there :)
The International Rett Syndrome Foundation has made AMAZING strides in their research of the disease. They have even completely reversed the disease in mice, even in the late stages!! That is so incredible to me! Now more then ever this foundation needs help so they can learn how to use the information they already have and use it for humans. It would be such a triumph to get a CURE, especially when they are right on the edge of one! Because of my Families love for are dear, sweet Chelan and hope that there will soon be a cure for future girls we are taking part in a fund raising Strollathon :) It is being held Sept. 11th and we are trying to raise some funds for this amazing cause. I don't like asking for money, but feel this is something people could really benefit from. The littlest donation will help :)

Please visit our Fund raising site here.

For more info on Rett Syndrome you can look here.
or just ask me :)

My Boy is BIG!

The binki is the next step...I'm just not quite ready yet!

The official big boy bed!

We even took down his changing table and replaced it with big boy books!

It seems to have happened overnight, but my boy is not a baby any more :( After a trip to IKEA with my Mom, we discovered that River loved the kids beds! So we decided it was time to convert his crib to a big boy bed. We are going to test it out for the first time tonight, so I will let you know how it goes. While I was downloading some pics I went back and looked at some older pics of River and I really almost cried...he really isn't a baby no matter how hard that is for me. Does it get easier or harder to see them grow up?
Tony was a champ and helped me turn the baby crib into a toddler bed. We even ditched the changing table! (We really don't use it anymore). I picked up a new duvet cover while at IKEA and I think it looks really cute, so maybe that will help me cope with my ever growing boy :)

Veggie Tales & Climbing

Thinks he loves these

But really just wants this!

He is just so stinkin cute!

Climbing into the pantry to help throw everything on the floor ;)

I'm so glad I have a child that loves his veggies!....Reality check...yeah right! So I think River thinks he loves his veggies, but really he just loves the ranch dressing he licks off of the veggies :) He made quite the mess with my cucumber snack! River has turned into the ultimate climber, if I take my eyes off him for two seconds he is on top of our computer desk...couches...or pantry! I have informed Tony that every door must remained completely shut otherwise we are going to have a trip to the ER for stitches, from a climb gone wrong, before we know it. He is the sweetest little guy even though he is starting to test my patience :)

Farm Country

Check out those lashes! I'm jealous!

His eyes are part open...he sleeps like that sometimes!

He looks like a big kid in this pic

Playing at farm country

learning things grow on trees

his favorite thing...buckles

but not to fast!

kinda interested in the goats.

My Mom was nice enough to take Riv and I to Farm Country about a week ago. A cow had just given birth to a calf that we got to see! River doesn't really like animals much at this point, but loves buckles and clips. So he found a horse rope with a metal clip on the end and loved it! They had a cute room that teaches kids where fruit and veggies come from, he seemed to like that more then the animals, but he got run over a few times by bigger kids and then he was done. I cant believe how big my little guy is getting!

Fun new lines @ Goldsmith Co.

is now carrying ...

Michael Kors

& Nixon!

I already got my Michael Kors! If you like these lines go on in and check them out in Goldsmith Co. Jewelers new watch boutique!