The Adventurous Life of Maggie Shae!: Road Trip! and, A New Taste

Saturday, August 25, 2012

Road Trip! and, A New Taste

Road Trip!
Yesterday we all went on a road trip, and I'm not talking 4 hours to Michigan, I mean 8 HOURS to visit The Swanson's in Kansas City!! On the way we stopped in this place called Iowa City and I think my daddy actually started drooling like me! He was pointing out all the places he loves so much because this is where he went to college. He had the goofiest grin on his face and he was just so excited to be there! He and I took a picture in front "Old Capital" and he said that I would be back in about 18 years. He was telling my mommy how The University of Iowa was voted the #4 party school and my mommy said that she's not so sure Iowa is the place for me...
The drive wasn't so bad. We saw lots of corn fields and grass fields and wheat fields and any kind of other field you could ever imagine. My mommy said, "This is the place for me!", and my daddy said, "NO WAY!". I guess opposites do attract!
After about 7 hours of fields I started to get boooored! No one was listening to me complain, so I knew I needed to turn on the waterworks to get any kind of break from this madness. I screamed for a good 15 minutes, and then I puked, and then they took me out! So my plan worked...kind of.
I was so excited to see my aunt and uncle and cousins, and they were so excited to see me too!! I was so glad to be here. I hope I don't have to get back in that car seat for a long ride anytime soon, but they tell me that they are nervous for Monday morning. I'm not so sure why though....

A New Taste
Sweet potatoes, blueberries and carrots, oh my!
This morning another new adventure happened. I ate real food! My mommy and daddy put me in this big seat thingy and put this giant bib on me and they stuck this smooshy stuff in my mouth. At first I made funny faces and everyone laughed at me because it was a new taste for me. It was a wonderful taste! I can't wait to have more of that stuff!!
Here's a video. I hope you can see it:

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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

Saturday, August 25, 2012

Road Trip! and, A New Taste

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