The Adventurous Life of Maggie Shae!: Here We Go!

Friday, June 8, 2012

Here We Go!

Well, well, well...here we are.

Over the past 8 weeks Maggie and I have had many a conversation. What else are a new mama and a new baby to do with their time everyday but get to know each other, right?

Well, to my delight I found out that she has a passion for blogging (it must have been all of those crafting blogs I read while she was in utero). I must admit, I've always wanted to start one as well, but wasn't really sure what to write about. But now that Super ShMags is here with her brilliant ideas I think we've found our niche. For those of you who know her you'll agree, she's just far too super not to write about!

Although Maggie is a super awesome baby with super awesome ideas, she hasn't yet mastered typing, so I will have to do that for her. Although most of these posts will be hers, I may throw my two cents in every now and then as well...

And so beginsThe Adventurous Life of Super Maggie...

Although she's only just begun her life, she has already experienced a lot. But more on that later. This blog serves as a chronicle of all of her adventures to come, good and bad (but mostly good!). It will be a bumpy ride, no doubt, but we invite you to strap in and come along with us. Just prepare to be enlightened by one special little girl's adventures.

It might just change your perspective on things....

~Jessica

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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

Friday, June 8, 2012

Here We Go!

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