Day 1105

Ava has been free from illness now since October - Praise God! We feel exceptionally blessed. It took me a while to get rid of my little cold that lingered for about 3 weeks, but Ava never got any sickness from any of us. We went to the Pediatrician 3 weeks ago and he made a few changes with hopes of not needing to see so many doctors in the future. She is now off of Albuterol puffs 2x a day unless it's needed. Ava is also chewing her vitamins as well now. We tried to seek a nutritionist that would help us with her food intake and her Pediasure feeds but we still haven't found one that specializes in kids. She did suggest giving Ava 1/2 cup of ice cream instead of the feed. Ava hasn't lost any weight and she isn't currently receiving any supplemental Pediasure unless she spits up. She still has a hard time chewing and swallowing certain textures. We have gone over a month now without a Speech therapist and not one in sight as we speak. Ava does choose to say quite a bit. Sometimes she is hard to understand, but most of the time she says something that we can. Tonight she wanted to sing her ABC's multiple times. It's amazing that she is trying to sing. I wish I knew what I could teach her but we keep asking her to "use her words" and help her to mimic sounds. She is really great at watching you correctly pronounce a letter and tries to do the same. She truly is God's amazing blessing. I can't wait for spring and to take her on many new adventures.

Thanking God for Ava's amazing life and praying for her to eat and speak well...

Day 1090 - Remembering...

Tonight after I was looking through my drawers in my bathroom cabinet, I came upon the Litmus Paper tests that I purchased three years ago. I remember that time like it was yesterday. The emotions I was feeling, the unknown, the fear, but also the grace of God. God gave both Anthony and I such peace that I can barely describe. No medications would have ever given us that. I wondered if I would still feel that way and if I am still in that frame of mind with my walk with God. 3 years have passed and we are still unable to attend a church due to keeping Ava safe and healthy. What I do have is the memory that God is in control. We lived that and let God control what was going to happen to Ava. Nothing will ever take that away.

My friend wrote the following on her Facebook page:
"Sometimes things get rough...sickness, death, life's drastic changes and ya get left...empty, numb, overwhelmed by every little thing. Then someone or something comes along and reminds you of the God that created the universe is in your life and nothing is to big for Him...Yesterday's miracles flood in and remind you....remind you...He holds your every breath...just breathe, keep walking fwd and let Him do the rest. I was reminded of this last night and this morning....it brings so much peace. Nothing like the breath of a little one that just breathes and lets God do the rest....thank you for this reminder Ava...you are so loved!!!"

That's what I have to do, as well as every believer. Take hold of these miracles that you have seen, especially this miracle that most of you have been part of. Always remember that God is in control and has the best intentions for you. Jeremiah 29:11 - For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. It may not go according to YOUR plan, but God's plans are so much greater and filled with the greatest of love for you.

Someday we hope to travel and tell Ava's story. It seems her story is a story of letting God control your circumstances. I think that time is coming soon but we are not sure how to get started.

Thanking God for the miracles we have seen and praying for peace for all...

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...