Just over a year ago..........

A year has gone by....wow! It has been a crazy year.  In this past year we have been through more than we could ever imagine. I believe we have been able to get through this difficult year because of each other, our amazing families, wonderful friends and Avery of course.  She just amazes us daily! In the last year Avery has changed 100%. Just over a year ago Avery didn't crawl, walk, talk, or barely move and her heart was enlarged. She could roll and then slowly learned to scoot on her butt.  Now her heart is no longer enlarged and she can do all of the above and then some!  In the past year we've been to Children's Hospital and numerous other doctors offices probably over 40 times. And to therapy over 100 times. Avery now has 2 physical therapists, Mary and Becky, 2 occupational therapists, Brian and Pat and 2 speech therapists, Alisha and Suzanne one each at Kids in Motion and one at Holly Schools. Also a physical therapist who is now in medical school..Shawn. Dr. Jiang http://www.childrensdmc.org/HuiyuanJiang  is the Dr. who diagnosed Avery. She has a Genetics doctor, Dr. Stockton, http://www.childrensdmc.org/davidwstockton a genetics Nurse, Linda and a genetics counselor, Suj. Avery also has a physiatrist, Dr. Dabrowski http://www.childrensdmc.org/?id=815&sid=1 , a cardiologist, Dr. Mahadin http://www.childrensdmc.org/DeemahMahadin, an ophthalmologist, Dr. Roarty  http://www.childrenseyecaremich.com/dr_roarty.php, a pulmonologist, Dr. Abdulhamid http://www.childrensdmc.org/?id=1540&sid=1, and an ENT doctor, Dr. Haupert http://www.childrensdmc.org/?id=1354&sid=1.  Avery also has a child psychologist, Dr. Chase. The Research coordinator Debbie has been putting in countless hours for Avery to switch from Myozyme to Lumizyme for this clinical trial. Avery's Infusion nurses are the best, Karen was the first we met, Tenae and Jessica along with several others throughout the year. We've made countless phone calls to our insurance company and Children's Health Services. We have a Genzyme rep Stephanie, we call her with any drug questions we have. This has been a crazy year and I can't even imagine what the years to come will bring! I'm sure I will be adding more to the amazing list of people soon!