The Adventurous Life of Maggie Shae!: Adventures in a New Perspective...literally!

Tuesday, July 31, 2012

Adventures in a New Perspective...literally!

I'm really used to taking adventures in my stroller. My mommy and I go for long walks by the big lake almost every week, and all three of us go for walks a couple of times a week. I really love those walks. I mostly snooze or look at my mommy making funny faces at me.
Today we went for a really long walk down to the lake and then we had a little picnic. It was so beautiful! Here are some pictures:

See how happy I am!

This was our picnic back-drop

Now, I love going for walks in my stroller, but sometimes it is hard to see all that is happening around me. Well, the other day something AMAZING happened!

Mommy and daddy decided to put me in this special thingamajig where I can just dangle and I get to look at everything around me. It's like a whole new world out there!

They decided to put me in it because they said I was getting pretty demanding about always needing to be held, and not only that (because they love to hold me), but I had to be able to look over their shoulder or else I would get really crabby. Hey, there's a lot to see out there!

They keep saying that my personality is really showing nowadays...

Anyway, my mommy and I took a big adventure to a wonderful place called Costco the other day and I got to ride in my special thingamajig. Boy, was there a lot to see there! I didn't know which way to look first! It was GREAT!! Plus, I got a lot of attention!

Check me out...

Here I am for my "test run"

Apparently, someone though it would be funny to take this picture of me

I can't wait for more adventures like this!

1 comment:

IvyAugust 1, 2012 at 4:30 PM
Glad you are enjoying your new perspective, Maggie!
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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

Tuesday, July 31, 2012

Adventures in a New Perspective...literally!

1 comment:

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