I think that Avery looks so big in this picture! Don't mind the "mom are you done yet" face!!

Last year at this time..Avery was a blob basically. She didn't crawl, walk, talk, and barely moved. I chose this picture from this Easter, 2012 becasue you can see the muscle definition in her legs. She is getting so strong!

Infusion 25, 4/27/12, First Lumizyme infusion

NOT what we were expecting. We thought it would get off to a slow start and just be an out of the ordinary long day. NOPE..not at all. We had the new meds going by 10a and were done by before 2 and home by 4ish.! Wade went with me this time and it was REALLY nice for him to go again. We had a really calm day, one poke, barely any tears and a really good girl. I continue to be a proud momma every single time she is so brave!
BIG thanks to Aunt Sarah who stayed with Mya and it sounds like they had a good day too. Caught a movie(Chimpanzee), a McDonalds trip and a trip to KMart..where she talked Sarah into gifts because Avery was so brave ;) SUCH sweet little girls! I am A VERY LUCKY MOM!

Clinical trial: Lumizyme

Avery is no longer going to be on Myozyme and will be switching to Lumizyme. Why? The way WE understand it...there was a manufacturing issue with Myozyme that created a shortage as well as Myozyme is made in smaller batches...so kids are using more Myozyme because they are getting bigger and living longer so it is getting used up faster. The dosage is based on weight so as kids get bigger they use more. Where does Lumizyme come into the picture? Lumizyme is used in Europe in Pompe patients currently. It is basically the same med just manufactured differently in bigger quantities. Genzyme(the company that makes both) is trying to get and FDA indication for Lumizyme in the USA for infantile Pompe. Since Avery in not involved in a study with Myozyme we really had no other choice but to do this trial.

Avery playing Angry Birds while waiting for tests

Getting her EKG and eating a sucker

With Debbie playing Angry Birds and getting ready to get vitals done

To get ready for this trial we had to make several trips to Children's in Detroit to sign consent forms and do baseline testing. One of the first trips we made was to sign consent forms. There were two basic consent forms and one autopsy consent form. The autopsy consent form kinda freaked me out. It was giving consent to perform an autopsy if something did happen to Avery. **Gulp**If that doesn't put things into perspective I don't know what does. At another time we went to Children's for a PT evaluation, an echo cardiogram and and EKG. Avery did so great during all these tests. She held perfectly still for the heart tests and didn't shed a tear...for a 2 year old I think that is pretty great. Next up...the first Lumizyme infusion on 4/27/12. Wade is going with me for this one.

Infusion 23, 3/30/12, Infusion 24, 4/13/12

Behind again, I need to update right away but then I get sidetracked and....here we are like 6 weeks later. So I have a foggy memory. Infusion 23 went good. Grandma Lorraine went with me. She got two pokes because she moved once but it went really pretty smooth. Infusion 24, the first infusion that I went without a helper...and IT WENT GREAT! I wanted to try one on my own for more than one reason: 1. to prove to myself that I could manage on my own and  2.  to practice without Grandma because they were gonna be in TX for several weeks. It would've went even better if we wouldn't have had to get a urine sample for the upcoming case study Avery is going to be involved in. All in all...Avery did AMAZING!