An Update from RMH & Aubree in the News

We are settling into our home away from home.  It is honestly so much better than being at the hospital.  I am genuinely so much happier outside of those teal colored walls, and I think Aubree and dad are, too.  While we are so thankful for Aubree to be seen and treated at CHOP by such a phenomenal group of medical professionals, we are cherishing the time we have to spend together as a family before Aubree has to be back in the hospital for quite a while for surgery.  Please continue to pray for peace for us in the days before surgery and after.  Also, please pray for Aubree to stay as well as possible throughout this process and for her to have a hedge of protection around her at all times.  We just want our sweet girl to be okay! 

Also, Aubree and her story have been in the news recently.  Last week, Larry Stroud from Derrick's hometown newspaper, the Batesville Daily Guard, interviewed us to write an article about Aubree.  He did a wonderful job relaying her journey and our hopes for Aubree.  There is not a free link to see the article (you must be a paid subscriber to see the article).  However, highlights from the article are attached to Aubree's picture on the Batesville Daily Gaurd facebook page.  Here is what it says:

Seven-month-old Aubree Elise Shaw will have her first Christmas far, far from home and facing a serious operation that hopefully will allow her to celebrate man...y more Christmas Days.

Aubree is the daughter of Derrick and Audra Shaw of Springdale and has an extremely rare genetic condition called Juenes Syndrome which affects the way a child's cartilage and bones develop.

“With this disorder, the main issue is that the rest of the body will grow at a relatively normal pace, but the rib cage grows very minimally if at all,” Audra said.

Simply put, the baby’s rib cage is much too small to allow her lungs to expand properly.

“She’s already requiring oxygen,” having been on oxygen since October, and also uses a continuous air pressure (C-pap) machine to force air into her lungs while sleeping, her mother said.

Aubree’s lungs function normally — they just do not have space to grow. Doctors say most babies with Juenes do not live past two years.

But things are looking up for Aubree since she arrived at Children’s Hospital of Philadelphia, known as CHOP for short, and the Shaws met the surgeon who invented a device called VEPTR — a vertical expandable prosthetic titanium rib.

“They’ll attach the VEPTR to the topmost rib and the bottommost rib. They’ll essentially break all the ribs in between,” said Audra. That will allow that side of the rib cage to expand to give Aubree more lung capacity.

An Aubree Shaw account has been set up at First Community Bank locations in the Batesville area in case any individuals, churchs or organizations wish to donate to help with the family’s expenses.

When she can, Audra puts new posts on raisingaubree.blogspot.com to try to keep blog watchers informed.

And she has a request for readers: “Please pray for Aubree and our family.”

 

Larry Stroud also submitted this article to the Associated Press, which formed another brief of the original article.  Once it was picked up by the Associated Press, other news organizations picked up the story.  KATV in Little Rock aired the story twice, and Today's THV in Little Rock also aired the story.  While I appreciate Today's THV wanting to be considerate of our family, we would have had no problem with them sharing her name.  I can't seem to get the videos to upload here on the blog.  All I get is an error message.  Maybe I can figure something out on that later!

 Here is the link to the article on KATV's website.  The article is the same on the different news sites that have picked it up.  After googling Aubree Elise Shaw, we have found that many other news stations have also picked up the story.  While it is neat to see Aubree's adorable picture in a news article, we are more excited about her story being shared and recruiting the prayers of as many people as possible.  Also, with these articles comes awareness about Jeunes syndrome and all that it entails.  And, from my experience in teaching, I know that with awareness comes acceptance.  Our desire is for Aubree to be accepted for who she is, and part of who she is her having Jeunes syndrome.  Do not get me wrong; Aubree is sooo much more than Jeunes syndrome.  It is just something that we deal with that is more invasive and involved that other challenges some families might face. 

Again, we are overwhelmed by all of the love, prayers, and generousity that has been bestowed upon us during this journey.  Thank you all for loving us and our sweet girl and praying for us all along the way.  We love you all and cannot tell you how much your support means to us. 

Below are pictures of the article as it appeared in the newspaper, Aubree in her pink fluffy body suit, and Aubree tasting corn on the cob.  She loved sucking the juice out of the corn on the cob!