AMC Conference

In July, Mary and I attended the 6th Annual AMCSI Conference.  AMCSI stands for Arthrogryposis Multiplex Congenita Support, Inc. Arthrogryposis means joints that are crooked.  Multiplex means multiple.  Congenita means at birth.
This conference was so fun and we can't wait for next year!  This year, we traveled to Kansas City to meet Ani, Abby, Theresa, Lindsey, Luca, Gabby, Alayna, MinJee, Bonnie, Bev, Nathan, Jacob, Jen, Cheryl, Tracey, Dr. VB, Erica, Zak, Maggie, Jennifer, Deborah, Doris, Ward, Karen and so many more!
There were sessions for adults and for children.  I learned about blenderized diets for G-tubes.  Mary is now receiving a balanced diet of real foods instead of processed formula through her g-tube and she is much healthier because of this!  I also attended sessions on PT and orthopedics.  I learned different techniques for treating muscles and joints.  I was given the idea to do serial casting on Mary's legs to get her to bend at her knees.  She is going through this now and I am cautiously optimistic.
Some of the sessions Mary attended were the children's petting zoo.

She also participated in making something that all the kids participated in by painting with their feet.

Then Mary and all the attendees did Painting with Theresa.

Theresa is a professional artist who has AMC just like Mary!  Her website is http://www.theresalucas.com/
To see the group photo of the conference attendees and Mary is right in the front, go to www.amcsupport.org

Summer trip Part 1

Mary and I went on a long (16 days) road trip this summer.  It was a great trip overall.  Of course there were some ups and downs, but a great trip nonetheless!

UPS - Mary got to visit with her Nonnie!
Mary loved showing her the book she made that shows a lot of her work from Pre-K!  I can't believe in September, Mary will go to school full days and be in Kindergarten!

my brother - Jonathan, me, sister - Ellyde, cousin - Greg

DOWN - We had to attend the funeral of my grandmother.
UPS - Mary got to meet her Uncle Jonathan for the first time!  (FINALLY!)  And while we were in the area, we went to Navy Pier and the Children's Museum.  That was fun for her.  Mary enjoyed watching TV shows on her iPad in the car during all driving we did.

Mary lost a tooth in the hotel the first night of vacation.

Mary is a good traveler.  We drove from our home in New York State to a hotel in Ohio.  From there we went to Chicago area.  We spent about a week vising family there.  Then we drove to St. Louis and spent the night.  Our destination was Kansas City for the Arthrogryposis Multiplex Congenita Support, Inc. Conference.

More on that next time, but here is a picture of a friend that Mary met.  :)

AMC

AMC

Mary has AMC. Support awareness for this disability by wearing blue on Wednesday!