Lily Update

Our little ladybug is doing so well!!  She continues to amaze us daily with her determination and over the top personality.  Wow!  She keeps us smiling...

Every night before she goes to sleep, Lily likes to look at her Bible.  She flipped through the entire Bible and told us that Mickey Mouse was not anywhere in her Bible!  I told her that the Bible was a special book that teaches us about God's love and Jesus.  Silly Lily was quick to tell me that she knew all about Jesus..."he flies all around up there (pointing up) and looks at me with binoculars"!!    We were quietly laughing too hard to ask if he wore a cape or had a big J on his chest!

She was sitting on the floor clapping her hands and saw a bug fly by.  She called out in a sing song voice, "where are you, bug?  Come here, I've got two hands for you" as she clapped even faster.

Mei Mei loves Mash and Reece.  She has started calling Reece "my boy".  When I asked her if Reece was her boy, then what was Mary Ashtyn.  She quickly answered, "mean to my boy"!!!   She has now started calling Mary Ashtyn, girlfriend :)  So funny to hear, "hey, girlfriend"!

Lily had a neurology appointment on 5/14.  Trent and I were so excited to hear that she has FINALLY gained weight!!  3 pounds may not seem huge, but it was to us.  One of the major issues with MDC1A (Lily's Muscular Dystrophy) is eating/swallowing difficulties.  Dr. Pierre was very pleased with Lily's weight gain and let us know that he wasn't worried about her swallowing.  HUGE praise!!  We will have some evaluations completed later,but what a relief for now.

Dr. Pierre agreed that Lily is very high functioning based on her diagnosis of Merosin Deficient Congenital Muscular Dystrophy.   He would like to see her using a forearm walker...which would be fantastic!!  It will take a lot of physical therapy, training, and PRAYER.

Lily is such a blessing.  Although we sometimes worry about what the future holds for her, it is impossible to dwell on the negative.  She is so full of life and joy!  She has taught us so much in the last 6 months, mostly how to enjoy the little things each and every day.  Lots of things have changed and our lives will never be the same...thank goodness!!