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Friday, December 2, 2011

Friday.

Just wanted to share, Oakes had a great night, and great day today. I went up in the morning to see him, he was sleeping peacefully and his numbers were all great. After picking Isla up from school we grabbed lunch did some power Christmas shopping, then went back to the hospital together. Oakes was still looking great, he was peaceful and calm. Isla climbed up in his crib and covered him with stickers while watching Charlie Brown Christmas. Oakes slept through most of the excitement, but when he was awake he was alert and smiley, which was thrilling for Isla and myself.

Dr. Oren did catch me before I left today and said that he has been pleased with Oakes since his OR trip. The Pulmonology team had a conference yesterday and discussed Oakes. Everyone is now on board with the biodegradable stents. The stents are not FDA approved so this will take some time to actually get the stents. The FDA will be involved, Children's will have all kinds of hoops to jump through, we will have to figure out the insurance piece, and then we will coordinate to have this British surgeon visit St. Louis Children's Hospital. Pretty amazing. Dr. Oren wasn't sure how long this would take, possibly months he suggested. So while we wait, Oakes will continue to have balloon dilations as needed.

I just called Oakes' room to get an status report and his nurse was so excited to share that he had just been belly laughing at her. What a week!!

No big plans for any of the Ortyls this weekend. Looking to keep things boring.
Lots of love to all of our friends!
XOXO

PS: I don't know how I almost forgot this. An article was published about our family in a local St. Louis paper today. Large color photo and all. Pretty amazing....tells Oakes story, touches on the Mighty Oakes Heart Foundation as well as the thoughts and wishes of our family.
Enjoy!


3 comments:

  1. Becky, thank you so much for keeping us informed about Oakes. Please know that ALL of the Laws are closely following the Ortyl's story. Thank you for sharing all the news. We realize it has to be tough to share the news when it's bad, but we really do care and we're there with you. We love you guys very much!

    -- Mickey

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  2. So glad to hear things are looking up and up! Amazing, Mighty Oakes, affecting medical procedure on a national level. Sending my deep breaths your way and tugging on those heartstrings.
    Love, always, from your MI family
    Kim

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  3. Amazing. He is in deed mighty!

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