Day 1089

This weekend we were able to attend two terrific events: Meet the Buffalo Bandits with Stone's Buddies from Children's Hospital and the Harlem Globetrotters with the Starlight Foundation. It's amazing to take Ava to these events and be a family. We used to take just Alexandra and Ariana when Ava was in the hospital.

Most of the people we used to see at Stone's Buddies haven't seen Ava in a year or so. One family hasn't seen Ava since she was on the vent round the clock. There is a certain sadness too. While Ava has gone through an incredibly recovery, most of these families have not. I am sure it was hard to see Ava thriving while their children are in the same place with special needs. We almost feel unworthy to be called "special needs" now. I have seen that term thrown around loosely with other children and it has bothered me. I'm sure it must bother them as well. We are very grateful that probably by the time Ava is 5, that term will no longer describe Ava. But I so wish that we could somehow help these families or they too could experience the joy of healing.

So many friends that we have met with Ava have recently gotten RSV. Even a 5 year old that came off of the ventilator the same time Ava did this past year. Please keep that little girl in your prayers, she's back on her ventilator (she does still have her trach thankfully). Also keep us in your prayers that we are protected from illness. It's unbelievable how that virus can affect kiddos that are that old. Heaven forbid Ava would have to be on the ventilator again; this year or the next few.

Thanking God for family fun and praying for protection...