A Quick Update

Sorry I haven't been sharing updates-- with the work it's taken to get the family out here and settled I've been kept hopping, and then since they've arrived we've been hitting the sights pretty hard the past couple of weeks. In the past week alone we've toured the Newport RI Mansions (Breakers and Elms), Boston's Fenway Park, the New England Aquarium, whale watching on the Atlantic Ocean, Boston's Old State House, hiked to a quiet beach at the end of a forested trail and collected shells, the Jack o Lantern Spectacular at the Roger Williams Zoo in RI, the famous Boston Duck Tour (on an amphibious vehicle that all of our kids got to practice driving while on the Charles River portion of the trip,) Eden's birthday picnic dinner at the Quincy Market "Hall of Feasts" (our own name we've dubbed the huge food court hallway), Plimouth Plantation (an authentically researched and recreated 17th century village as close as possible to the original Plymouth colony site, filled with live actors who were quite impressive in their roles as townspeople in the interactive village), Boston's Science Museum, cranberry bogs during harvest, and the Westport Family Farm Harvest Festival.  So grateful for free passes and discounts at many of these places thanks to various tips, research and (in the case of the Science Museum) gifts from the hospital family center.  2-year-old Gideon's headcold also passed to Audrey last weekend. She is still receiving weekly dilation procedures under general anesthesia; last week's went fine, she had constricted some and he gave her her third round of steroid injections and took her back to a 12mm opening, still shy of the 15mm goal. She came down with the bug last weekend and has been steadily recovering, she is her perky self again, so this morning I got up at 3:45 am, showered and drove her in to Boston in order to be at the pre op waiting room at 6:15, but the anesthesiologist listened to her lungs and heard some wheezing with mild chest retractions, so her procedure was canceled and we were sent upstairs to pulmonology. She had a giant wet sneeze in the pulmonologist's office (it was really funny, actually) and after that there was no more sign of wheezing or retracting, but the doctor said that any wheezing whatsoever was treated proactively in these kids with the same asthma medications we were so used to in Eden as a baby. Many frustrating hours of logistics and pharmacies later--including a trip to the compounding pharmacy in New Bedford, thanks again Wendy B who gave me the tip to go there for our difficult-to-fill compound prescription!-- I finally got to rejoin my cute kids who had been enjoying a warm day at the green and lovely rental house in Westport. Justin has had a lot on his plate for work still and continues to juggle those responsibilities between and sometimes in the midst of our playtime, much the way I'm still managing the logistics and sundry details of Audrey's appointments, meds and much of her care. But between his conference calls this evening we cooked a nice dinner on the barbeque, had lots of discussions with the kids about important decisions and prayers and thoughts for our 11-year-old EA/TEF friend Aliyah who had major surgery today, and took some gorgeous photos of the sunset over the water. Heading to an early bedtime. Love to you all! Thank you for your prayers and help!!

Reunited!

Whirlwind weekend-- Audrey's dilation on Friday showed she had re-constricted from a 15 millimeter opening in her throat back down to an 8 in ten days, so Dr Manfredi injected steroids and dilated her back to a twelve. He did not try to take her all the way to 15 because during the dilation he also removed the old sutures from her August surgery, in hopes that that might also reduce the swelling (since the body's natural process of expelling something stuck in the tissue is to swell while working to "push" it out), and didn't want to risk a perforation by going too wide without the sutures to hold the newly healed section together. Her recovery was again perfect and we were out very quickly. Then Saturday was a huge day, I picked up the rental van and got my feet wet driving in Boston, headed back to my host's home and got all our stuff and took it down to Westport where the family and I will be for the next four weeks, set things up cute for the kids and unpacked a little then headed back to the city (1.5 hours) in the DARK and after little sleep the night before, and made it back to my host's house to get one part of a crib that had been left there, then to the airport where the fam and I reunited. We got to Westport around 1:30 am and have been resting most of today, with many fun plans for the week ahead. (And there was much rejoicing.) If this post sounds drier than the news deserves, it's only because I'z jess too tiiiiiiired to move.

Isabella Stewart Gardner

Audrey had another great dilation today-- she had constricted a little, back to approx 9mm from 12 on Friday he said. He took her up to 15mm but did not do any injections. We were out of there so quickly and she was feeling so well that we went to check out a beautiful museum I've been dying to visit, the Isabella Stewart Gardner "Palace" (I need some really fancy curly font for that word. Preferably gilded.) No photography was allowed, so please permit me a few words for this experience. This woman had amassed an unreal art collection in her lifetime and constantly encouraged contemporary art as well, shipping giant architectural elements from Europe as well as setting up her place as a haven for artists to come and work, holding parties and music concerts in celebration of the arts. John Singer Sargent was a close friend of hers and he worked there a lot. In the end, she set up the place exactly how she wanted it and designated that nothing in the palace collection was to be moved or changed after she died, as part of her stipulation for the trust funding. The foundation has built a new adjacent building to further her dream of encouraging contemporary art and provides an artist in residence program in which anyone can apply for a one month stay in their artist apartment. Looking around at all of the art, it was easy for me to think how empty a life that might be, if so much of a person's life's energy was spent in the acquisition of so many things and the near-worship of the works of human hands. But then looking deeper you learn that she started the museum project after her only child died as a two year old, as a way to heal, and was further propelled into obsession with completing it when her husband unexpectedly passed away. What would I do, in a similar situation?  She was a stubborn perfectionist. The focal point of the palace is a glassed in courtyard surrounded by stuccoed Venetian walls, for which she mixed the paint color herself and instructed the painters to finish in a particular way, and when they did not do it right, she had them do it over. She supported new artists she liked by buying contemporary art from them. She also used the art by enjoying these spaces with hosting concerts and parties, and encouraging artists to come any time and work there. Despite all the masterpieces on every corner, the museum encourages children to visit.  It was so moving to take in all of this incredible lavish beauty and unspared expense everywhere, from a mother's perspective, seeing all the things a child would not be allowed to touch, and knowing instinctively from her words and life photos that hint at her powerful soul, that she would have given it all if she could have had her small son in her arms again. It's also ironic and a bit sad to see the rooms that she lovingly prepared with plenty of seating intended for patrons of the museum, but the chairs and couches themselves are now considered artworks and guests are not permitted to use them. The lovely fireplaces and servingware go unused, evidence of parties full of laughter long past. It is a perfect place for ghosts and humanities majors. She said, "Years ago I decided that the greatest need in our Country was Art… We were a very young country and had very few opportunities of seeing beautiful things, works of art… So, I determined to make it my life's work if I could." Needless to say, I found a new friend in this stubborn amazing woman. Hats off to you, Mrs. Gardner.