Looking to the future
Ava in her Pack n Play at Ronald McDonald House in Philly
July 8th. That's the day Ava gets VEPTR. It will probably be the most intense surgery out of a series of surgeries over the next 14 years of her life. Dr. Campbell called last week to let us know that a day opened up that he could do this surgery. It was a miracle because they have been booked for quite some time and there was no assurance that we could get it any time soon. He said he was concerned about her based on the last time he saw her and wanted to move more quickly. They are going to attach vertical titanium ribs to both sides of her rib cage in hopes that it will straighten out the spine and give her more lung capacity. These ribs will be expanded every 4-6 months until her spine is done growing, so we are committed. Let me just say, Ava is a real trooper. She goes along with everything and still continues to smile. We on the other hand, are the ones that can barely stand it. We had no idea at the beginning that what we thought was just "scoliosis", could be so life threatening. It is wonderful to us that there is something that can be done. We are going to update our blog regularly during her stay at CHOP, so stay tuned until then.
We wanted to show pictures of her back pre-surgery
Cute Pixie
A more extreme view of her back and chest
4 comments:
I love Ava Handley. I am praying every night and fasting for this little girl. She is so sweet and adds so much to all of our lives.
She looks so comfy, home at Grandma and Grandpa's. I'm sure they are happy to have you with them.
Thanks for the update. She is such a cutie. I love seeing her cute little face and smile. That is great she is standing! Well I think about you guys a lot, and I hope everything goes smoothly with this up coming procedure.
I LOVE her hair! Zoey is jealous! :)
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