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Peace

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This is my new shirt and it has never been more true.  The last few days have been filled with phone calls, paper work, scanning documents, and faxes.  We have prayed about our decision, talked to Abby's pulmonologist, weighed the options, and cried.  There's no great answer, and our pulmonologist recognized that.  She was quick to acknowledge that we have had to make hard decisions for Abby before and we have always made the right one.  She did echo a lot of our concerns and validated our feelings on the options, which helped us to make a decision.

1.  We are going to meet with Dr. Lenke at Columbia University Hospital in New York City.  There was a 14 page application (yes, I said application) and I had to request all of Abby's medical history related to her spine, as well as her most recent CTs, MRIs, and Xrays be sent to them.  Once all of that is received and reviewed by Dr. Lenke's team, they will decide whether or not they will accept Abby.  If we are able to get an appointment, we will discuss the possibility of a VCR in the future and what he feels will be the best long-term approach for Abby.

2.  In the meantime, we are going to have Dr. Anari put the rib to rib VEPTR back in.  We are hoping for sooner, rather than later, because our pulm is not thrilled about her being in the hospital during flu season but feels we shouldn't wait until after flu season is over.  CHOP has told us that they won't schedule her for surgery until after they meet with the Center for Thoracic Insufficiency Syndrome team (CTIS) at the end of November.  I'm not sure why that really matters, but they assured me that they can get her in sooner than the next available if it is needed. 

We have talked to Abby about the 3 options and she actually said that waiting hasn't worked for us so far and she's not ready for the VCR, so there's really only one option.  Let's get that VEPTR back in!!  I love that girl.  She knows she needs it.

For now, we are waiting on a surgery date and looking forward to our upcoming trip to Disney World!!  There was never a better time for a vacation. 
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