I have a few blog posts rattling around in my head. Hopefully I'll find a few spare minutes to put finger tip to keyboard. In the meantime, this recap of the past week will have to do.
First a HUGE (so big that was a silent "H" as in "UGE") thank you to everyone who has read the blog, left a comment, offered a meal, planned a day with our kids or made a financial gift. We are overwhelmed and humbled by the generosity.
At about Noon last Friday we got a call from the transplant team at Barnes asking if we could come out to St. Louis for a series of appointments beginning Monday at Noon. With the blessing of our bosses and the help of our parents and a few dear friends to stay with the kids, Eileen and I sojourned out west on Sunday night. (If nothing else, the short notice and haphazard circumstances of the trip confirmed that we will do much better to plan our move in advance rather than listing and waiting for lungs from Cincinnati).
On the medical front I did another set of pulmonary function tests (FEV1 of 15-17% - about the same as June) and saw an asthma specialist Monday. Dr. Castro is a pretty big deal in asthma circles so when he said that transplant is our best treatment option it was oddly affirming coming from a physician of his repute. The week also consisted of a bone density scan, some blood work and a pre-transplant education session with our nurse coordinator, Kelly. Our doctors appointments wrapped up with allergy. I still have a milk allergy that is "off the charts," but no reactions to anything else they tested (other foods). The allergists were also a bit concerned about my lowered immune function (this was the reason Cleveland Clinic attempted an IVIG infusion in the fall) heading towards the winter with two little kids. They ordered a few more labs and have some treatment ideas, though there is a cynicism that this would change my lung function any more than serving as a preventative role during cold, flu and pneumonia season.
In between those appointments Monday through Wednesday we toured apartments and placed a deposit at Aventura at Forest Park. It is a brand-new complex two blocks from our old apartment on Gibson, three blocks from Forest Park and only four blocks from Barnes. We also visited St. Margaret of Scotland School to register and pick up a uniform for Adah. She is super excited to start school and already shopped for her school supplies.
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Thanks for reading. I'll try to post a little more depth this weekend.