Special Miracles

Special Miracles is dedicated to promoting the support, love and respect for all individuals with Down syndrome.
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Posted 2015-02-25 17:06:59 | Views: 1

Little Lauryn’s Princess crown

Posted 2015-02-25 15:07:49 | Views: 1
Everyone who knows Lauryn, knows she is a little princess, but did she REALLY need a crown???  

YEP! Lauryn had PLAGIOCEPHALY

What is Plagiocephaly?

Plagiocephaly is a condition that causes a baby's head to have a flat spot (flat head syndrome) or be misshapen.  
The most common form is positional plagiocephaly, which is what Lauryn had. It occurs when a baby's head develops a flat spot due to pressure on that area. Babies are vulnerable because their skull is soft and pliable when they're born.  Positional Plagiocephaly is caused by prolonged pressure being applied to one side or area of the baby's skull. 

A baby's skull and bones are still soft and malleable during the first few months after birth. This making them prone to deformation if uneven pressure is applied over time. This includes the time a baby spends sleeping, reclined in a baby seat, bouncer, cradle or swing, strollers and car seats.  
Plagiocephaly shows up most often in babies who are reported to be "good sleepers," babies with unusually large heads, and babies who are born prematurely and have weak muscle tone, which was the case for Lauryn.  
 
Recent research and studies have shown that the incidence of deformational Plagiocephaly has increased rapidly since 1992 when the American Academy of Pediatrics (AAP) first recommended back sleeping and 1994 when it introduced its "Back to Sleep" campaign, recommending that parents place infants on their backs or sides to sleep in order to prevent Sudden Infant Death Syndrome (SIDS). This highly effective program has reduced the SIDS rate by almost 50% in the United States and across the world, but has resulted in the unintended consequence of a rise in positional Plagiocephaly.


What does this crown do?

The more “formal” name for what was Lauryn's “Princess Crown” is a cranial remolding helmet, a device that helps reshape the head. It creates or facilitates improved symmetry by guiding the growth of the child's head. For Lauryn, this device was used to make contact with the higher spots of her head and leave relief in the lower areas so that her head could fill in these areas. This technique , along with growth, guided the shape of her head into improved symmetry.

How often did Lauryn have to wear her “Princess Crown” and was it uncomfortable?

To get the best results, Lauryn needed to have her crown on as much as possible - Up to 23 hours a day! She did however get some "breaks" when needed, such as when watching a baseball game in 90 degrees weather. The helmet itself did not seem uncomfortable as it was very lightweight. The fit was snug, but not snug enough to cause headaches, pain or any other discomfort. The only downside was her getting sweaty or hot especially during the heat of the summer , so it was always essential to keep an eye on her body temperature and give her breaks when needed.

How long did Lauryn have to wear her “Princess Crown”?

As with so many things, each child is different. The most success is seen in the first year after birth/up until the fontanel closes (which is typically around 1 year, although it is common for this to take a little longer in infants with Down syndrome). The average time spent in a cranial remolding helmet is 3 to 6 months. Lauryn started wearing her helmet a little later than the ideal "start" time (around 6 months).
Doctors felt she still had time to benefit from it, so we forged ahead. Lauryn got her helmet when she was 8 months old and wore it until just before her first birthday (close to four months). She got to the point where she couldn't stand to put the helmet on, it got to be hot, sweaty and tight. We saw a significant improvement. 

She still has a very slight "flat" spot, but it is not noticeable at all. Her princess crown is "displayed" in her bedroom. 

Making A Difference

Posted 2015-02-25 14:04:35 | Views: 1
Inspired by Lauryn (the daughter of Jen Buechler - co-founder and current CEO), 21 DreamS was born out of a desire to "do something" for World Down Syndrome Day (on 3/21) - to create something that would raise awareness for Down syndrome, as well as to celebrate the beautiful lives of people who have Down syndrome.    

21 DreamS started as a fairly simple concept; to create an inspiring book featuring pictures of and stories about individuals with Down syndrome.  
The first volume was published, and several more have followed. In addition, 21 DreamS has evolved into a community platform where:  
AWARENESS... 
ACCEPTANCE... 
INCLUSION... 
and INSPIRATION...
is created. 

About The Books  

At the heart of 21 DreamS is a series of books entitled 21 DreamS - stories that will open your eyes to life.   

Each volume gives a voice to 21 (plus Lauryn) beautiful and extraordinary individuals and 
families. 

Hopefully after studying the photographs and reading the stories featured in the books, readers will perceive the world in a new way - with eyes opened to a life of awareness, acceptance, inclusion and inspiration.  

10-15% of the total cost of each book (a large portion of the proceeds) goes to Down Syndrome Indiana (our local Down syndrome organization), which is dedicated to enhancing the lives of individuals with Down syndrome through education, support and advocacy.   

Visit www.21dreamsproject.com to purchase your copy of 21 DreamS: stories that will open your eyes to life! 

Get Involved  

There are many ways to get involved in the 21 DreamS project! Join us in spreading the message of awareness, acceptance, inclusion and inspiration!   
Be In the Book!  

I am continually looking for families who are interested in a loved one being featured in one of the 21 DreamS books.  

All photo sessions, etc. are currently done in Indianapolis, Indiana. If you are interested in being a part of 21 DreamS, please contact me at [email protected].  
Help 21 DreamS Go Global!  

I am looking at ways to expand 21 DreamS nationally/globally (such as connecting with photographers around the nation who would be willing to donate their time and talent in photographing families to be featured in future volumes).  

Contact me at [email protected] if you are interested!   
Click HERE to "Like" 21 DreamS  on Facebook