Sunday, November 4, 2007

Brief Update

Hello to all.

A brief update here; Ava Grace has had a few more surgeries; the most major one recently has been for her eyes. One eye keeps wanting to "pop" out. If the doctors cannot get it to stabilize in place, she will be blind.

The next major surgery planned has had it's timetable changed once more. She will be going in for surgery to remove some bone to make her head and facial features appear so long. She was scheduled for this surgery in the spring after her first birthday but it is being scheduled for the very near future. I will post updates as I know them.

Your continued prayer and support for this little family is so deeply appreciated.


Rachel said...

God bless you and your daughter. My younger brother was born with a type of this condition and he is now 21 years old. My parents elected not to have any surgeries and just to let him grow as he was. He has grown into a wonderful young man who loves God, football and laughter! He graduated from High School in 2006 and currently works at our local grocery store. You can see some of his pictures from childhood and his graduation pictures at:
There is hope in putting your trust in God. We are a God-fearing, prayer-believing family...and we will remember Ava in our prayers! God has been good to us...always remember that no matter what happens keep your faith in him...he'll never fail you. Sometimes we don't understand things, but trust in the Lord always! I say this will all love and hope...knowing what it's like to face this in my family. I thank God that Nick didn't have to endure the surgeries...truly my heart goes out to Ava. Feel free to contact us anytime...we will always pray with you! (My father is the pastor...feel free to email or call if you need to.)

Becky said...

My name is Becky and I have a son named Wade who was born with Pfeiffer Syndrome like Ava. I'd love to talk to you... Looks like we have a lot in common. Wade's birthday is 2-13-2007. He has a trach/g-button/shunt as well as tarsorraphys, 1st Cranial Vault and some other minor surgeries... His website is and my email is

Hope to talk to you soon!

Becky, mom to Wade