5-26-11 Infusion #1, post #2

We're home!  We got home at about 5:30! The end to a vey long day!  Grandpa Dick brought Mya home and we are all just hanging out now!  Avery was a trooper today!  She was really tired though and didn't even make it out of the parking lot before falling asleep!  She was also starving when we got home.  She didn't want to sleep there at all...which ...is understandable...it is loud at times and her IV kept beeping, they also are taking her temp etc. all the time it seems!  It wasn't as bad as Wade and I thought.  It completely SUCKS having her get that IV in...but after that it was fine.  We can do this!
We also met the only other child at the Detroit Childrens Hospital that is getting ERT infusions. His name is Cameron.  He is 15 months old and is really not in good health at all. He is on oxygen and also has a feeding tube. He also has a pic line so the infusions go a little smoother.  He sits up and that is about it.  It makes us feel VERY lucky that Avery is who she is and in the condition she is in...because it could be worse.  Cameron hasn't had a real bath since 4 months old as he has to be sponged bathed because of the pic line.  We are thankful.  Keeping sending positive thoughts!!
 Special thanks to Granpa Dick for keeping Mya overnight and Grandma Joan across the street for letting Charley Boy out!  WE APPRECIATE ALL OF OUR FAMILY AND FRIENDS!