Monday, June 30, 2014

200


Hello, people of the internet! We wanted to let you all know how happy we are that our Facebook has received it's first 200 LIKES! I know that may not seem like much, but to us it is. I wish that we could put into words how important Awareness is to our Family. Thanks you all, again, for the love and support! Without you guys we wouldn't get too far, now would we? 


Thursday, June 26, 2014

Tara!

Hello, Everyone! Meet Tara, my new Occupational Therapist! She is awesome and we all Love her dearly. Say "Hi!" to Tara.
She's so excited to help out with our new Awareness Group and lets my Mom and Aunt Nana take her pictures and even videos. Which makes things so much fun for all of us. 

Today we did a lot of cool things. I got to play with a slime ball that had been filled with a bunch of little beads and toys. I also played with puzzles and a few different toys. I love to sit with Tara on her lap and give her hugs. She is definitely my favorite to date! 

This is Me and Tara playing today at my therapy session.

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I hope you enjoyed watching me play with my new friend Tara. I sure did enjoy our play time together, like I said, she's my favorite!





Monday, June 23, 2014

Brochures

Hello, Everyone! How goes it? I wanted to let you in on one of the things my family is doing to make a change in Rett Syndrome Awareness.

My family has been going crazy trying to come up with ideas to help spread Awareness about my disorder. You would be surprised how often my Mom and other get dirty looks from passer-by's in public because of the way that I am. For some reason, they seem to think that I am a product of disciplinary problems. You and I both know that is not the case. If more people understood that there are disorders out there that are as severe as they are then maybe they wouldn't be so quick to judge. It makes my Mommy very sad when people say things under their breath and give rude stares. I am special.. a beautiful being.. not a crazy child.

My family worked very hard on creating some brochures to take to doctors offices around our area. You might also be surprised to hear that when my Mom takes me to the doctor they have to "Google" my disorder. And often argue with my Mom about what it is. (Makes sense, right?). Now, they will have a little more information on my disorder and hopefully some of their patients will as well.

Take a look at our cool brochures! And let us know what you think!


What do you think? Cool, right? Do you see my awesome new logo? They worked so hard to make these. Now, it's just a matter of getting to Staples and making a ton of prints! 

What are some things you have done to make a change in this world? Let us know! We would LOVE to hear about it! 


Sunday, June 22, 2014

The Simplest of Things

Hi, Everyone! First, Thank you for all of the support we are receiving here and on Facebook and Twitter. We're trying so hard to spread Awareness and help raise funds to find a cure. All of this Love is much appreciated and wanted.. so... Keep it coming! ;)

Having a child with any disability can be a challenge, trust me, we know. So, we wanted to show you all a lighter but more difficult side of raising a girl with Retts.

Now, normally it takes Emma's Mom's entire body to get Emma to brush her teeth, even when she lets her try on her own. She literally has to pin her between her legs to hold her down, which you will hear our Nephew/Camera man state in the Video. However, that's where the "Lighter" comes in today. Emma did not need to be pinned down, lucky for us. But, you still get a glimpse of how difficult it can be. I hope you enjoy this Sweet but Education video.

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Thank you all again. We truly do appreciate all of this Love.



Friday, June 20, 2014

Smile.Amazon.com

Hey, Guys! Did you know that when you shop on Amazon you can donate to a charity? We just found this out and wish we would have known sooner! I know I love to shop on Amazon.com, because I can find everything I need at a great price. Now, I'll shop there even more so because they donate 0.5% of your order to a charity. Instead of typing in "Amazon.com" put "Smile.Amazon.com" and there you go! You can either choose from a slide of different charities or type in your own. Here at Forever Emma Lou and You, we have to ask for your support (of course), so please put in International Rett Syndrome Foundation. If you do, drop us a message and we'll be sure to let everyone here know what a great thing you did! It doesn't matter if it is for Rett Syndrome or not, charity is charity.. so let us know! Okay? Thanks, Guys!

P.S
Here is a link to Smile!

http://smile.amazon.com/


Wednesday, June 18, 2014

Uncle Jesse did WHAT?

Hi, Guys! I wanted to let you all know the awesome news! My Uncle Jesse, he lives in North Dakota, called their local News Station and asked if they would be interested in doing a story on my disorder, to help spread Awareness. Guess what they said? They said YES! They were extremely interested in spreading the word, which made my Mom and Family Super Duper Happy. Now, my Mom is waiting for the phone call from them for her interview, which should be any day now. Then, the word will have been spread a little farther! Isn't this exciting? Even though my whole family has been working on raising Awareness for such a short time, they've accomplished so much. It really means a lot to have so many supporters! Thank you all!



In with the New!

Hi, Guys! I wanted to share my exciting news with everyone. Now that my Mom is getting us settled here in North Carolina, I've been meeting a lot of new people. Such as, Hailey, my new Occupational Therapist. She's really nice, I let her hold my hand.

 She helped me color a pretty picture and even do some puzzles, which I enjoyed very much.
 Also, I got to go down a slide and play with whatever caught my eye.




She liked me so much that I not only get to go see her THREE times every week, but she gave me an awesome bracelet! I'm so lucky! If I continue to meet people like this then I'm going to have so many friends I won't know what to do with them. Which, is fine by me!

What are some Adventures that You and Your Family have been having? We would LOVE to hear about it!

I hope everyone is enjoying my Blog. Don't forget to go like us on Facebook at Forever Emma Lou. (There's a link at the top of this page.) And, keep coming back! We Love having you!


Tuesday, June 17, 2014

About Me

Hi! My name is Emma. I am almost 7 years old and have a pretty awesome life (I mean, seriously, look at how happy I am ^). However, I am forced to live with Rett Syndrome. I'm sure you're all wondering what Rett Syndrome is, so please, allow me to fill you in on the facts.

Rett Syndrome is a X-Chromosome mutation that affects little girls almost exclusively. Boys lack an extra X-Chromosome, resulting in miscarriage, still birth or early childhood death. Rett's causes regression where children should be progressing. Such as, mobility and language development. This is where I am different. All the other little girls my age that suffer from Rett's are already in wheelchairs or close to being so. I am still running and playing. I still regress, just not as quickly. It's a very complicated situation, I'm sure you can understand why. Not only is Rett's currently incurable, but I have the most unique strain of it currently to date.

So, my Family is trying to raise not only Awareness but Funds to help find a cure for all of the Rock stars out there that live with Rett Syndrome. They are confident that, eventually, we can get there and save thousands of children for generations to come. Please feel free to Follow us on our journey to Rett Syndrome Awareness (with crossed fingers) and it's Cure.


Making a difference

Hello again world! Emma here, asking a huge favor. I know we've only just met and all. And that my blog is still super simple. But, could I ask a favor? When you stop by please Click on our "Follow" links and "Join this site" bar on the right of the screen. If I know people are coming to see me I'll feel a lot better, even though we haven't really gotten too far with our Twitter and Facebook. But, I promise we will. It means so much to see my page views growing, so, Thank you!

Enough of that, though. I thought I would let you in on something that I think is pretty cool. There is this website and you can go there and donate a little bit of jingle towards Rett research. Isn't that awesome? I love it! My family is trying to find a way to add a donation button here on my Blog, so that you all don't have to go through all the trouble of searching for the link. Remember, sometimes the only thing standing between you and a cure is.. money. Isn't that sad?

So, go over and donate! Are you still here? Oh, well it might help if I gave you the address, right? Here you go!

https://www.rettsyndrome.org/get-involved/donate

Don't forget to Like, Follow and Support my blogs. Right now, getting the word out about Rett's is our top priority. So, help out! 

Oh and one more thing! If you do go and donate, let us know! We'll be sure to let everyone know what a generous and caring person you are, right here on Forever Emma Lou. I mean, you are helping to change the world. Why should something so important go unnoticed? 


Sunday, June 15, 2014

Buns (hotdog buns, that is) and the Sun

Happy Father's Day, World! Did everyone have an awesome weekend or what? I did, and I cannot wait to tell you all about it!
Can you guess what I did? I went SWIMMING for my favorite cousin's High School Graduation party! It was so much fun. We got to swim in my Aunt Shannon's huge in the ground swimming pool, eat yummy food and have chocolate cake! 
Do you see the hand print where it is supposed to say "You Did it, Meow"? Guess who did that? You got it! It was most definitely, Your's Truly! Was I sorry? No. No, I wasn't. It was hilarious. I have no regrets. 
Here I am interacting with my Aunt, who is obviously the most entertaining person on the planet.

Here I am with my Great Aunt Shannon a.k.a Aunt Nana. She had recently asked me to have a seat for a few minutes before this picture was taken and I got mad at her. Well, when I was aloud to get up she asked for a kiss. Remember how I mentioned something about being mad? Yeah, no kisses for her. This is what she got instead. As you can see by the image above, she loved it just as much. The beautiful lady sitting behind us is my Great Grandma.

This is my Aunt Tif. She is obviously holding me hostage. No, seriously, look at me. I look miserable. She's always trying to hug me and kiss me and love me. Ugh! Don't you just hate Aunts? Yeah, me neither.

In this image, I am doing one of my most favorite activities... SWIMMING! I could swim all day long. I almost did. I spent hours in the pool and it was awesome. Within minutes of exiting the pool and going inside (about 2 hours after this photograph was taken) I fell asleep. I sure was pooped.

The party was a blast. There was great food for me to steal, water for me to paddle in and other children for me to play with. I also got to meet a few new people, which is always exciting for me. So, all-in-all, it was a great weekend. I truly had a great time.

What did YOU do this weekend?






Wednesday, June 11, 2014

ASL Colors Song

Hi again! I wanted to tell you something that I think is really cool. At the school I attended this year they were teaching me sign language. My family is currently trying to learn, because, well, lets face it, we kind of have a communication error. So, this is a pretty exciting time in my whole families life, where everyone is trying to work together to accomplish the pile of tasks they have at hand. Which shouldn't be a problem for them, they're pretty tough.

My favorite way to learn sign language is through song. Now, my new school introduced my Mom to this Channel on Youtube, and let me tell you, I LOVE IT! My absolute favorite is the Colors Song. I can sign almost all of the colors and even pronounce some of the words. To my family this is a huge event.

Do you want to see how awesome I am at singing the Colors Song? My Mom is a little embarrassed so please leave her some love at the bottom or she might kill my Aunt (Not really, well, lets hope not).

For your viewing pleasure, The Colors Song.

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Am I not the most adorable thing you have ever seen? I love the Colors Song! It is definitely my favorite. When I am really upset or bored I can watch it and feel all better. My entire family can sing it with me now, considering how many times they have heard it, they have no excuse. Even the little kids in my family can sing and sign with me a little. It's really something that has bonded us as a family. It has definitely given me a sense of security. So, I'll slap a link on here somewhere for you to find the origional Colors Song so that you and yours can enjoy it as much as we have. 

https://www.youtube.com/watch?v=W5jdJ2CsFuM