Our Busy Week in New England, and the Plan Ahead

July 22

Safe in Boston!

July 23

Thanks to wonderful church members in Boston we reached our destination, spent a comfortable night and made it to our (bright and early) flurry of appointments. Finding my way back to our host's home later miiiight be another story, hahah! The streets here began hundreds of years ago as hunting paths following deer tracks, and make little sense, but hopefully I can figure things out enough to manage! Spending most of our time so far this morning waiting for busy doctors, but everyone has been very kind and Audrey is getting a great nap in her stroller! Passed the grand marble entrance for Harvard Medical School and looking forward to feasting my eyes on all this gorgeous architecture!

July 24

Today I spent the afternoon with my old pals, Renoir, Monet, Van Gogh and Fragonard at the Boston Museum of Fine Arts during an adventurous day in Boston ahead of tomorrow's surgery for baby Audrey, and tomorrow many of our unknowns will come to a head when the docs take their first real look at her situation from inside her esophagus and decide whether to try cutting out some of her scar from the inside. Loved Skyping with my funny precious kids tonight.  

July 25

We learned so much today that apparently my brain was too full to remember the name of one of my favorite composers when I heard a favorite piece in the middle of the night (played by the other patient's family in our shared hospital room). What kind of day is it when I actually needed to GOOGLE Claude Debussy.... I don't think I will ever live it down to myself, hahahah! I love learning new things but it's not supposed to push out the other good stuff! We finally know what we need to do for Audrey, and the relief is huge. She is doing fantastic. They cut out a small portion of her scar today from the inside, but the picture shows clearly that her esophagus is a perfect candidate for a resection--the surgery where they go in through the chest wall and cut out the bad part of her esophagus, and then sew it back together. This is of course both good and bad news, but I feel confident that we are doing the right thing.  Dr Manfredi showed me exactly what is happening in her esophagus from a gastroenterologist's standpoint, and it was sobering.  Her swallowing and pooling in her esophagus is forcing the top end of her esophagus to distend and damaging her one area of healthy esophagus muscles.  She needs the resection surgery as soon as possible in order to save the good stuff she has, and the best news is there is plenty of give to work with--she should not require anything unusual to make the two ends fit together.  At least we know what we have to do, and I am confident that he is the best gastroenterologist in the country for her situation. Dr Manfredi will take over about two weeks after surgery and begin training her surgical scar prevent it from trying to grow over.  He is a lot like Dr Downey in the way he approaches medicine, and really won my trust with his balanced and conservative approach.  I wish there was a way Dr Downey could be there to assist with the resection, but the Boston surgeon Dr Jennings will surely do a great job. 

Spending tonight in the hospital for observation. We will head back to Utah some time in the next few days and return to Boston as soon as they can get her in for the surgery, probably mid August, when we will spend approximately a month in the hospital and then two months here as outpatients for followup therapy to train her scar to grow in the right way so that it no longer tries to close off her throat. We will try to do some fundraising while I'm home in order to make it possible for the family to come out for the outpatient portion of the treatment, and continue to find ways to do the best and healthiest thing for the entire family. Thank you for all of your love, prayers and support!

July 28

We have a surgery date for August 24, the start of three months of things she'll need out here. Saw a ton of Boston the past two days by foot and have become much more comfortable with the layout and how to get around by public trans-- I've definitely gone from discomfort to a genuine affection for this city already. Met up with my friend Tamara in Connecticut and will spend the rest of my stay with her family until I catch a flight home from New York City thanks to the charity Miracle Flights. Today I saw a house my family could rent for a few weeks in Westport, MA, but I still have a ways to go on being able to afford spending two months there with the children, but that remains our hope and dream. SO much to think about. I need help planning fundraisers in the first half of August. We will tailor our plans to fit whatever we are able to put together. Thank you again, everyone, for all of your love and support.

July 29

COMING HOME WEDNESDAY!!!!!

August 1

Home safe and snuggling my children at last, after a major delay on the Tarmac at LaGuardia turned this day into a very long one, but all's well that ends well. Thank you Boston and New York, see you again soon.

 

 

August 2

Organizing photographs and trying to work my way back into the groove at home.  Highlights of the trip: making new friends, seeing old friends, and lots of help from friendly strangers (especially helping with my stroller up and down stairs in the NYC subways). Lobster and blueberry pie with my new friends Amy and Rosa (this special homemade dinner was a gift from a lobsterman and his wife whose daughter had recently had surgery, for the families of patients at Boston Children's). Being serenaded by a street performer on the subway in Harlem. The DUKW tour of Boston, the cat-sized rat I narrowly avoided in Harlem station, a friendly stranger looking at Audrey and asking me, "But is she pink enough?", the helpful LDS bishop and his family in Boston and my friend's family in Connecticut and New York who helped me immensely in getting where I needed to go at the critical moment, an amazing day in NYC with my friend Tamara filled with a kaleidescope of incredible moments, walking with our strollers through a flock of pigeons in Central Park, buying takeout at the oldest restaurant in the United States and them really truly calling it CHOWDAH, Audrey waving hello to Mme Roulin in Van Gogh's painting La Berceuse, an Italian woman at McDonald's handing me my "Cinnamon-ah Melt-ahs" and me realizing my treat had just jumped a couple notches on the yum scale, New Yorkers every bit as friendly as I remembered, if not more so. Tamara and I following street signs pointing us toward the Holy Ghost and winding up finding a dairy serving Bliss ice cream, visiting the 9/11 memorial and learning about the Survivor Tree, amazing architecture in Boston down every. single. alleyway. Fresh blueberries the size of grapes. Flying above a surreal sea of white fluffy clouds at sunset. Fireflies in the forest at twilight.

I have to be an optimist, it's how I'm wired. The Children's Hospital experience was in tandem to everything else we experienced. I'm saving up the good memories to help us through the hard times. Audrey and I will just take each day at a time, and do our best to seize every one of them as our energy allows. I like to believe she'll have sweeter dreams because of the things she's seen.