The Adventurous Life of Maggie Shae!: Hey, Hey, I'm 5 Months Old!

Wednesday, September 12, 2012

Hey, Hey, I'm 5 Months Old!

I can't believe it's already been 5 months! Things are really changing in my life everyday! I am learning all kinds of new things, exploring and discovering so much each day.

Here are some things that are new this month:
I love to hum and "talk", even at 3:45 in the morning (like last night!)
I roll back and forth to look at things or reach for things and I can go from my back to my tummy with some work, but I haven't tried to go all the way over from my tummy to my back without help just yet.
I love peek-a-boo (usually it's just "BOO!", and I laugh and laugh!)
I love to look at myself in the mirror
I can sit up with help
I love to touch people's faces and I'll grab it with both hands and open my mouth (my mommy swears I am trying to give kisses)
I love being 'dipped'
I am starting to experiment with my exersaucer ~ eventhough I can't reach the bottom with my feet I like to dangle!
I love to grunt to get attention, then when I get it I smile so cute
I sleep until about 9:30 each morning and I (usually) go to bed by about 9:30
The other morning I flipped 180 degrees in my crib. I was facing the complete opposite direction, and sometimes I end up sideways too!
I love to eat sweet potatoes and I like bananas and apples. Rice cereal is a little boring for me now! My mommy tells me I will be trying green beens, parsnips, and carrots soon.
I LOVE to be read to and sung to.
I LOVE dancing to music.
I LOVE going for walks and I turn my head to see everything that is around me.
I'm not sure how long I am or how much I weigh, but when my Papa measures me he says I'm about 24.5" long, and I must weigh about 14 pounds by now (but mommy and daddy swear it's more)!

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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

Wednesday, September 12, 2012

Hey, Hey, I'm 5 Months Old!

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