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!

Chocolat

If you love chocolate as much as I do...this is a must!! I randomly found this article in believe it or not, consumer reports! I thought it was weird that there would be an article on ice cream! Anyway it rated the best ice cream flavors...of course one of them being chocolate. I was amazed to see that this Archer Farms (target brand) Belgian Chocolate competed with the much more expensive brands like, Haagen Daz & Ben and Jerry! I figured I would give it a try and it didn't disappoint! Yummy...creamy...chocolate...goodness! Go buy some :)

PS. Tony tested and approved (he even asked for seconds)

15 month check up

Being a typical boy!

Well I can't believe my little baby is turning into a little boy so quickly! River went in this morning for his 15 month check up and these were his stats:

Length: 32 1/4 in. (75%)
Weight: 21 lbs. 14 oz. (25%)
Head Cir: 48 1/4 cm. (75%)

So River has stayed pretty consistent of being tall, skinny and with a big head. :)

There were a few concerns I had about River's eating habits lately. He has gotten to be such a picky eater and sometimes will go a whole day with barely eating anything at all. I was getting a little worried, but the Ped. told me this can be very normal and that River is probably more of a grazer when it comes to food. Eating a few bites here and there throughout the day rather then at meal times. That just makes it a little hard to prepare something and then just have him take a few bites and be done...but I guess we will figure it out.
The Dr. asked if River was saying any words yet and seemed slightly concerned to hear he wasn't talking at all yet. He said he should at least be saying one word. He was very impressed with how personable River was and said he was socially functioning very high for his age. He said he isn't to concerned especially with how high functioning he is socially, but that at his 18 month app. he would probably run some preliminary autistic test on him. He quickly said, I can tell you right now River is not autistic because he is interacting so well with children and adults, but it would just be for the language issue. So, I hope River starts to talk soon so we don't have to do any of the testing. I feel confident that River is not "slow" just taking language at his own pace.
So that is what is up with us as of late...we are going to Farm country tomorrow so I will post the pics from that soon. :)

I know!

With no apologize I would like to share somethings I know to be true...

I know Christ lives and truly loves everyone of us.
I know that the atonement is real, and meant for all of us to benefit from.
I know there are living prophets today that are lead by our Heavenly Father.
I also know that there are strong opposing forces at work to make us forget what we know.
I know I am imperfect and fall short most of the time.
I know I am the dust of the earth and the only thing that makes me special is that Christ loves me.
I know that I don't want to forget what I know!

I believe that now more then ever we have to know and act on what we believe and what we stand for. I pray that I will be able to stand for what I know to be true, even when it means I may feel alone. Knowing my judge is God not man. I have many shortcomings and want to be better then I am. I felt a perfect way to get started is to state what I believe and know to be true.

What do you know?

DC

Washington Mon.

Lincoln Mon.

Mount Vernon

Temple! Felt like home here :)

WWII Mon.

Vietnam Mon.
We got caught in a crazy rain/wind storm!! We were SOAKED!!
We found out later this storm uprooted huge old trees and our hotel lot power for the whole night!!

Yummy Pizza from "We the pizza"
Sorry for the picture overload, but I use my blog as a memory keeper for our family :)

My Dad, River and I were able to go to DC for a jewelry show being held at the Gaylord @ National Harbor. It was such a fun place to stay right next to a shopping area and of course the beautiful harbor. We did have some work to be done, so we tried to get that out of the way first so we would have some time to go see the amazing sites DC has to offer. We were a little nervous about going in August with the humidity, but we really lucked out and had amazing weather with just a day or two of humidity. My Dad and I had been to a show at DC years back, but really didn't have a chance to see much because it was Winter and FREEZING!! We went to the National Mall of course where most of the sites are. We visited the Lincoln, Washington, Korean War, Vietnam War, WWII monuments all there in the Mall. We were lucky enough to have a coworker who is interning on Capitol Hill for the Summer and he took us through a tour of the Capitol, which was really fun. We visited Mount Vernon (Washington's home) and got lost several times in DC :) On one of our lost detours we ended up in Georgetown and saw Georgetown Cupcakes (TLC reality show) the line was around the block so we didn't stop. It was so much fun just getting to see everything and realize how much this country was built on God and the belief in his power. It was a little sad to feel that now of days you can barely talk about God in public without being criticized. It makes me that much more thankful for what are founding Fathers did for us though.

My Saving Grace!

Watching one of his favs Ratatouille

Just chillin in his cute pj's

Our DVD player is currently not functioning, so luckily we DVR all the Disney movies we can :) We have a good little collection now that River loves to watch. Sometimes I feel like he shouldn't be just sitting in front of the TV, but man does it help me get things done. Is that really bad? I can take a shower without him screaming at the curtain, do a little laundry, vacuum, etc. It's not like that's all he does or anything, but what do you use as a guideline for how many movies/tv time is appropriate for your little one?