Max is 20 months today!

As the title suggests, Max is 2o months old today, which means he's only 4 months away from being 2 years old. Where has the time gone? We went hiking through our park yesterday and Max had a great time playing in the forest. In general we've been playing and dancing and learning and just having such a great time that it's almost unbelievable that Max's engraftment came back this time at 16%. It took a little bit longer to get the results because I switched the ERT sessions to Louisville, which is much easier, but they have to send his blood to Cincy for testing.

This last week was a little bit frustrating because they didn't have the Aldurazyme on Wed morning when we came. They promised it would be ordered for Thursday, but it wasn't. Then, the scheduler in OMO told me there was no room for Max so he'd have to wait until Monday. What!? After arguing with everyone I could, we managed a room for Max in Inpatient Friday night so he could get his medicine. We finally left the hospital at 10:30 at night, but at least we got his meds. Hopefully it gets better.

Also, Max has been taking his dressing off recently. We are currently trying the double shirt + one shirt backwards technique; we'll see how long it lasts. We need a more permanent solution though so if anyone has any suggestions please let me know. God willing, Max's engraftment will go back up and we could get rid of this stupid line and go swimming.

Much Love, and thanks for keeping up with us.