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Saturday, September 10, 2011

Today & Tomorrow, both just amazing! (written Saturday)

A quick update from today, as I know many of you are wearing pink and thinking of the Butz family. The memorial service for Elizabeth was amazing. The church was full. Full of family and friends of Elizabeth's, full of love, full of support. Elizabeth's parents both spoke, and were both so poised, so thoughtful, so strong, it was something special to witness.

After the service butterflies were was perfect.

Isla with her Pappa!

And Oakesie all dressed up when I returned from the service. Thank you Shannon & Anna!

Other positive news about today: Oakes is 6 months old today. 6 MONTHS! Happy half year little Oakesies, we LOVE, love, love you!

An update for tomorrow: Oakes trach will be changed out. Completely standard and normal. He has been healing just as they had expected. The amazing news is that with the new trach, Oakes will now be more mobile than he has been in months. And the best part of that is that we can HOLD HIM WHENEVER WE WANT!!! I will be here in the morning for the trach change, and then I will have my arms extended just waiting to squeeze my little guy. We have some serious catching up to do. Oakes may never walk, because I may never put his adorable little body down!!

I know for certain that I will have to put Oakes down on Tuesday. He is scheduled to take another little trip to the OR with buddy, Dr. Huddelston. I had mentioned before that when they placed the trach this week they were able to see significant scarring at the point where his tissue meets the donor tissue. So Tuesday they will do another broch where they look into his airway and they will actually dilate that area, using a balloon.

Other than that, the plan for next week will include continuing to wean the vent, as well as his sedation and pain meds and also starting to look at his nutrition. In order to be discharged we have to know how to feed Oakes. He will likely have a swallow study completed and then we will start offering food orally. I even got wind that we might go straight to cereal if he has a good swallow. We shall see.

So, prayers of thanks tonight. Completely thankful that Oakes has made it this far, and that he is doing so well. Thankful that our lives have been touched by so many new friends lately. Thankful for our little Isla.

Love to all of you!

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