it's been a year? Already!

Wow..it is so hard to believe that we started infusions on May 26, 2011! It has been a year! Avery has improved so much in that time! She now walks, talks, runs a little and is just like most normal 2 year olds! This drug, Myozyme and now Lumizyme has saved her life! Her heart is no longer enlarged and she talks back and has attitude like her big sister Mya! We couldn't be happier! There were times in the past year that we had no clue where we would be or what we would be doing or how she would be doing...and look now! AMAZING! A MIRACLE for sure!

Just a swingin!

Avery on the big girl swing! (video)

Avery wanted to swing "all by myself" we were a little nervous because she is still a little floppy! Wade seemed really nervous...and then Mya wanted to help...yikes! It all worked out :)

Happy Girl!

Tippy Toes

Unbelievable!: Avery walked several steps on her tip toes! How exciting! She just did it the other day and Wade and I both said...look she is walking on her toes! I'm glad we both got to see it! That means...she is getting stronger than ever! Amazing! Love my little monkey!

Infusion 27 5-25-12

Yet another Lumizyme infusion under our belts and Avery is doing great! We did a lot of walking this time and Avery was really good. She had pizza for lunch from Subway and had green(sour cream and onion) chips for a snack along with strawberries, raspberries and yogurt! Yup all that before 1pm! HAHA! 1 more infusion then we might get switched to home infusions..which would be LIFE CHANGING for us! Fingers crossed that Genzyme gets the ball rolling ASAP!

Infusion 26 5-11-12

2nd Lumizyme infusion and it went great! Same as always! Avery was really good! Just patiently waiting for home infusions! At least 2 more Lumizyme infusions (and that will put us past our year at the hospital for infusions) before we can even consider home infusions!