The Adventurous Life of Maggie Shae!: November 2013

Friday, November 22, 2013

Everybody's Got Something To Hide Except Me and My Monkey

Ok, so I've been hearing some complaints about my pacifier use, so I'm here to clear some things up:

1. I love my Monkey and my Hootie (my pacifier and owl puppet)
2. They've been with me through thick & thin since I was just a little peanut. Lets be real here, Hootie has been my rock, my shoulder to cry on (literally), and Monkey, well, he's there when life just plain sucks (pun intended).
But most important of all..
3. If I give them up then that means the parents have won the battle!! And I'm not ready for that to happen just yet..

There was an intervention, and I can tell that Mama and Daddy are really working hard to stick to their guns on this one. I've been bribed, I've been reasoned with, I've been threatened (I can hear them plotting to cut off the paci part! Don't think I haven't!) - oh yeah, they're pulling out all the stops! But it ain't workin'. I've perfected the art of getting my way (especially with Dad)!

Here's the thing, I'm 19 months old and I still have a 'paci', 'bink', 'wubby' or whatever you want to call it (and chances are you did too at some point in your life!). It's not like I have a problem or anything. There's no monkey on my back here. I mean, I could stop anytime I wanted to..
What? No, I'm not sweating just thinking about it...I can..get by without them...You know..I, uh...I just don't feel like it right now...yeah..yeah, that's it..

Oh jeez! Who am I kidding?! I CANT SURVIVE WITHOUT THEM!!!!!
Whoo, okay..breath...uh, hold on a minute..I gotta go find Hootie and Monkey...

Here are a few shots of us just hanging, looking at the trucks and hugging

Okay, so I guess you'll just have to stay tuned on my progress with this situation..

In Other News:

I had my first real big cold and it was the pits, except for the night that Mama and I watched Ratatouille at 3 in the morning (she didn't think that was so much fun)
I started walking up a storm last month and I haven't looked back! I walk everywhere, including trying to walk down our cement front 2 steps. I made it past the 1st one, but that 2nd one got me. I got a big scrape by my eye and a bump on my head - again, not so much fun!
I love to say, "1,2,3 - GO!" and run across the kitchen
I love to count and the number 8 is my very favorite (I even find it in books and on signs!)
I am very polite and have been saying 'thank you' for a while, but now I say, "thank you, welcome!"
On the flip side, I've also learned to say, "stop!" when someone is doing something I don't like (such as wiping off my face or doing anything that interferes with my playing)
I am learning to go potty and I like to sit on my Elmo potty - fully clothed..I guess I am not really ready yet..
I am now such a busy girl that I don't have time to use people's full names. Mama and Daddy are now just Mom and Dad. Papa and Nana are Pop (sometimes Pops) and Nan.
It was Daddy's birthday recently and I was in charge of decorations. So, naturally, I got Minnie Mouse and Daisy Duck! I mean, you really can't go wrong with those two. Let me just say, it was the best decorated birthday for a grown man ever!
My MI cousins came to visit me at my new house earlier this month and we had so much fun! I can't wait to see them again soon.
Next week I will see my Kansas City cousins and then we get to go on a trip to OH to spend Thanksgiving there with family. It's going to be so much fun!
My Grammy is going to come visit me in December!
I love the holidays! I can't wait for Christmas music and decorating and snow and the Thanksgiving Day parade. Oh, it's all going to be so magical! Mom and Dad have been telling me about this guy Santa who brings me presents - I just can't wait for that dude to show up!

Also, I'm happy to say that I've been helping The OIF with their 50,000 Lives, One Unbreakable Spirit Campaign. The goal is to raise $10M in 4 years to help 50,000 people living with OI and fund 40,000 hours of research to one day find a cure. If you're looking to give a charitable donation to a very worthy cause please consider this one.
Have you checked out The OIF's website lately? If you would like to be added to their eNews listserv just go to www.oif.org and click subscribe on the left. They have tons of great information and OI news each month.

You can also subscribe to my blog by entering your email in the upper right hand corner, that way you'll never miss a post. And feel free to forward on to anyone who would be interested in hearing from a witty little gal who seems to always greet life with a smile.

Well, another month behind us and so much fun stuff to come! I'm wishing you a very happy Thanksgiving and many new adventures to you!

xoxo,
Maggie Shae

Adventures in Blogging...

At 6 weeks old, after a very low-risk pregnancy, our first-born child was diagnosed (very unexpectedly) with Osteogenesis Imperfecta (OI), or Brittle Bone Disease. OI is a rare disease with no current cure.

Understanding OI can be confusing. It is not black and white. Each case of OI is unique and each patient is affected differently. Although each person affected has one thing in common: weak bones that can often break easily - one person can have hundreds of breaks in a lifetime, while another only suffers a few.

There are still many questions to be answered about OI.

This disease is unlike any other and we, along with the medical community, are learning more and more about it everyday.

What we know for sure is that many people are confused by it, including many doctors and medical professionals. Through no fault of their own, many do not study it thoroughly (if at all) in medical school. We've had to explain it several times to medical professionals we've encountered at hospitals, including ER staff at well-known Children's hospitals. Many times we hear from these professionals, "oh, yes, I've heard of that," but many have never seen or treated a patient with it. This can be scary since even just handling a child with OI can cause breaks. These are the very significant issues with OI: awareness, education, training of medical staff and research.

We originally started this blog to communicate Maggie's daily progress and doctors visits more effectively with all of our family and friends. Most of the time we put a fun spin on it by having it written in her voice. We also wanted to help others who may be confused and going through this same initial shock, as we were. We searched for others like us and for any information we could find. Sadly, a lot of it was even more confusing and scary. Lastly, we wanted to give Maggie 'a voice' before she even had one.

However, now that we've been living with the effects of OI we've come to realize that raising awareness about this rare and underfunded disease is what really matters most. By spreading awareness, as is the case with many other "popular" diseases, the general public and medical community can become more aware of how to effectively treat patients, and, most importantly, development for much needed new treatments and a cure can be funded.

Our lives have been forever changed from what we thought our expectations of it were. We've had to rearrange our lives and our daily activities because something as simple as getting bumped into at a splash park can result in a traumatic public display and a visit to the ER with a compression fracture of the spine. Sadly, these events are not uncommon for most families living with OI.

But we are on a new path now and determined to always make the best of the situation. Knowing silly, sweet, smart, sassy, strong Maggie, anyone can understand this. We feel fortunate that Maggie's case has been labeled 'mild'.

It wouldn't be right to say all of this without acknowledging all of our caring family members, friends, medical professionals and perfect strangers who have come into our lives and shown us love, understanding and support each and every day.

We hope that others can find humor and solace in the everyday adventures that our little family stumbles through, find hope in our journey and, ultimately, spread awareness about Osteogenesis Imperfecta along the way. Thanks for helping us achieve this goal!

To find out more please visit: www.oif.org

Friday, November 22, 2013

Everybody's Got Something To Hide Except Me and My Monkey

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