Saturday, June 9, 2012

NIH Study

We are spending the weekend in Bethesda, Maryland so that Lily can participate in a study at the National Institute of Health (NIH).  It involves around 35 other children who also have Congenital Muscular Dystrophy.  It is an outcome measures study that will help determine ways to chart progress of future drug therapies to treat/cure CMD.
After the first full day, we are so thankful to be here...even if we are missing Reece and Mary Ashtyn terribly!  Lily spent the day testing and spending time with other AMAZING children like her.  We have been blessed to spend hours talking to parents who are on a very similar journey to us.  They understand what we're going through and it has been a relief to be able to talk with them about, equipment, power chairs, feelings.  We've cried, laughed, made fun of each others' accents, and watched our sweet blessings play. 
There is no way that I can describe how it's felt to meet these other children who also have CMD.  They are all beautiful children and most of them seem to be just as sassy and determined as our Lily.  It's the same spirited determination...the never give up, I can do anything mentality.  At breakfast this morning, I noticed a beautiful little girl waving to Lily.  Her father brought her over so that we could talk.  Sophie and Lily started a discussion about their shoes.  When Lily told her that she loved flip flops, Sophie asked if she tripped a lot.  Lily quickly said, "I can't walk".  Sophie sweet face lit up and she joyfully said, "I don't walk either!".  My heart just melted, it was the sweetest thing.  As Lily played in the indoor playground, a  little boy using the same crouch walk came over to see what she was doing.  She shouted, "Look Mama, he walks like me!".  What a blessing this has been.
Trent has pulled Lily in a wagon and raced with our new friend, Bean, who has a power chair.  Lily has gone from refusing to discuss riding in a wheelchair to wanting a power chair to race her Daddy.  She was able to use a KidWalk mobility trainer to "walk".  In just one day, her world has opened up even more with so many new opportunities for independence.

Lily's first test of the day

Physical Therapy Assessment

Pulmonary Function Test


The results will have to be read by a Dr...but the test administrator said the results looked average for a child her age!!!

Testing Done, Time for FUN!!  Wanna Race??

Not sure who had the most fun :) 

Victory!!  Only took 10 tries to win!  LOL  

"Beiber", "Mr. Crazy Guy" and Lily

Lily in the KidWalk

My Hero!!

Turning around to "walk" the other way

Painting with her new friend, Ella

Inside the playhouse with her new friend, who walks like her :)

This trip has once again reminded us that we are so blessed to be Lily's parents.  God has been so good to us and we are excited to see what tomorrow holds!

1 comment:

  1. What a sweet blessing to connect with other families walking through the same diagnosis, and for Lily to meet children like herself. I pray they come up with a cure quickly or better yet that God would touch Lily with his healing power!

    I love this post, seeing the new equipment and technology was most interesting! See Lily's smile is priceless!