AVERY'S JOURNEY

    

 Avery was born with a rare condition called arthrogryposis multiplex congenita  which affects the joints and muscles in her lower extremities.   This is the amazing, inspiring journey of our beautiful little girl....  

       

 

 Avery was born with bilateral clubfeet,  dislocated left hip and her right knee was hyper-extended 30 degrees. Avery's left knee is also hyper extensible and her spine is also affected by arthrogryposis.   She has decreased muscle mass and tone in both of her legs.   She has had her tibia (foot) broken twice and femur (leg) broken once.  She suffered the broken bones due to disuse osteopenia, which basically means osteoporosis that was brought on because she did not bear weight for the first 17 months of her life. She was also born with a VSD (hole in her heart) which closed on its own when she was two months old.  At that time another congenital heart defect was found, a PDA (basically an extra vessel in her heart).  Thankfully, this heart defect also corrected itself. Here she is in her first set of casts to help treat her club feet.  Avery spent the majority of the first 17 months of her life in these long leg casts.

 

 

                                

  

             

                                        

                       Here is Avery at 17 months standing for the very first time.           

   

                                                          

 

                      

Frequent traveler

Avery initially began to receive treatment locally here in Michigan.  Unfortunately, after 15 months, we saw very little progress.  With some help from the amazing amcsupport website (http://www.amcsupport.org/) we were able to connect with the wonderful Dr. Harold van Bosse, who at that time was practicing in New York at the NYU Hospital for Joint Disease.  In February 2008, Avery began to make weekly trips to New York in order to receive treatment for her club feet.  During our time in New York we stayed at the wonderful Ronald McDonald House http://www.rmdh.org/ 

In June 2008, Dr. van Bosse transferred his practice to the Shriner's hospital in Philadelphia.  Avery continues to receive treatment from him in Philly.  Avery also continues to travel to New York to see a wonderful geneticist, Dr. Pappas along with his genetic counselor Ellen Moran.  Avery also recently began seeing a neurologist, Dr. Chu at the NYU Hospital for Joint Disease.

                         Back In Casts

Avery's had two regressions of her feet. One in beginning the first week of December 2008 and more recently June 2009. She was back in long leg casts for several weeks. This required weekly trips to Philly for several weeks each time.  While we traveled to and from Philadelphia we stayed at the amazing Ronald McDonald House in Camden, New Jersey http://www.ronaldhouse-snj.org/index.php                      

                                   

Beginning October 2009 Avery also began to see two doctors at Cincinnati Children's Hospital for some GI/ possible urology issues.  While we stayed in Ohio we were blessed to stay at the Fabulous Ronald McDonald House in Cincinnati http://www.rmhcincinnati.org/index.aspx which is located directly across the street from  the hospital.  Here are some pictures from our first trip.

        

The RMDH                         During testing @ the hospital        Outside @ the RMDH

(The Hospital is behind it)  

 

 

And some doctors told us she would never walk....

Well at age 2 1/2 Avery proved those initial doctors wrong by taking her first unasissted steps..

 

 

                                                  

Here is Avery and Dr. Harold van Bosse.  http://www.shrinershq.org/Hospitals/Philadelphia/about_us/Team/Harold_van_Bosse_bio.aspx

 

 

 

Avery usually gets around using her  reverse walker and she began using it at the age of 2.

 

 

 

 

 

Our Family:

Greg, Jill, Dexter, Tatum and Avery

 

                 

                             This is Avery in her pre-wheelchair at 2 years old.