The Adventurous Life of Maggie Shae!: Hey, I'm 4-months-old!

Friday, August 17, 2012

Hey, I'm 4-months-old!

Happy 4-month birthday to me!

I'm laughing at mommy and daddy because they put this ridiculous flower in my hair, but boy do I look cute! Mr. Ellie is getting smaller and smaller because I'm getting so big! Do you like how I'm showing you my new dress?

Here are some things about me this month:
length: 23 1/2 inches
weight: 12 1/2 lbs
head: big!
I am wearing 3-6 month clothes and my mommy is worried that I will grow out of them too quick!
I can hold my head up on my own now!
I can sit while supported!
I "talk" a lot and I love to make raspberries, and I LOVE when people make sounds at me!
Oh man, my tooth still has not come in!
I've slept 10, 11, & 12 hours! (but sometimes I still wake up in the middle of the night...)
I LOVE to look at myself in the mirror!
I turn to see when someone comes into the room
I'm almost rolling over!

I'm a big girl now!

1 comment:

IvyAugust 17, 2012 at 2:22 PM
You're growing up way fast, little 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

Friday, August 17, 2012

Hey, I'm 4-months-old!

1 comment:

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