Tuesday, October 7, 2014

6th surgery is set!

go WYO













Yesterday 10/6/14 we went to Salt Lake City for appointments at Shriners. Her first appointment was with her hand orthopedic surgeon. She was checking up on her hands from the surgery in May and thought they looked great. We have scheduled her 3rd and hopefully final finger release for November 10!! So our goal is to keep her healthy for the next 4 weeks..... easier said than done.
pretty girls

Her second appointment was with her feet orthopedic surgeon. This was just a routine check up but we have been a little concerned with her feet, since when she tries to run she acts like she is unbalanced. So they watched her walk around and ended up taking x-rays and discovered that her heel bone and the bone directly in front if it have actually fused together since her x-rays she had done a year and a half ago. ( a common thing with Apert Syndrome) This may or may not be the reason she isn't really running yet. There is nothing surgically that they can do to help this so she was custom fitted for some orthotics.  Hopefully this will help her out.  So not wonderful news but at least we got some answers.

She loves to do her chores
Off to get x-rays




Any how, she is a growing little girl! Today she weighed in at 27 lbs and was a whopping 3ft tall!!! She is talking so much and surprises us everyday with a new word or sound.












We got to go in and talk to part of the 5th grade class a couple of weeks ago.  They are reading the book "WONDER" and since B has a lot of similarities to the main character in that book we went to to talk to them about her and her syndrome, how to approach someone who is "different", and showed them that she is just like any other kid her age.  We got thank you cards from all the students and  they loved meeting  B and hearing her story and it seems like we made a lasting impression.  Huge success, I'm just so happy!!  It was great to spread awareness.  

What better way to entertain yourself than to play peek a boo!
oh the things we do to stay entertained
Her cpap is moving along.  She slept 11 hours with it the other night!!  That is a HUGE milestone and am just so very proud of her determination.  She impresses us everyday with everything that she accomplishes