Our Afternoon in Cape Cod

The days my family are here with me are quickly evaporating and we are hastily fitting in everything we can from our bucket list! Today we drove the loop around the tip of Cape Cod to see what we could see! Lots of hours in the car, but learned a bit and enjoyed some gorgeous vistas during our three stops to get out and see things. I have to confess that although it was very lovely, Hwy 101 on the Oregon/North California Coast has them beat. Most of the Cape Cod scenic highway is too far inland to see the ocean! And there are no town roads that connect along the coast, so you have to choose a spot to go to. Granted, we had never been there before and weren't sure what to expect, simply following a list of spots to hit from TripAdvisor. Still, we loved seeing the Nauset Light and the huge waves off Eastham beach, the glittering dunes of the seemingly endless Race Point Beach, Herring Cove Beach near the tip of the cape where you can see ocean in all directions and watch the sunset, and the Pilgrim's Monument. Justin even got a bit of work done in the car, making it easier for us to take advantage of the sunny (though bitter cold) weather today! Good day for a long scenic drive.

 

Biopsy Results

Some pretty important news on Audrey this morning. She had a biopsy of the tissue in her lower esophagus to check for signs of acid reflux, to check to see if acid was the reason for her stricturing. The biopsy came back normal, giving lots of weight to the doctor's opinion that it is not the cause, and that she might need another resection to stop the madness. (Yes, please stop the madness! Wait, no surgery. Give me an aaaaarrrh!!) 

Because of scheduling conflicts, they won't be doing another dilation until next week-- they told me January 8th, but I'll be driving the family to LaGuardia airport that day, so it will be even later. This will be the longest stretch between dilations, it's going to be interesting to see what happens. Thanks for caring. Love ya all!

In a twisted way maybe, it's sort of a relief. I mean, we needed to know, and I was scared to death to get a Nissen fundoplication, it just felt like it wasn't right, but not sure, you know?

Even if the team decides she needs a second resection, we are probably going to find a way to hobble our way through another year.  We're not ready for another major surgery.   We'll give her time to grow and stuff and schedule it when it feels right. It would take a compelling argument to change our minds on that. 

Christmas in Massachusetts

We visited "The Breakers" mansion in Newport, Rhode Island, on the afternoon of Christmas Eve to see their magical decorations. This was the summer cottage of Cornelius Vanderbilt II and their large family of many children; I point that out because I think it's very charming that they encourage children to come visit this incredible museum-like mansion, a palace really. In one of the historical narrations they explain that the Vanderbilt children and their friends were sometimes even permitted to slide down the banister on the staircase! Perhaps differently from what one might expect, visiting these mansions I got a strong sense that this was in large measure a wonderful, wholesome place where children and families were considered of paramount importance. 

Facebook post from December 25:

Merry Christmas everyone! We are SO, SO thankful for you, our friends and family far and near!!! We hope your day has been filled with love. Our sweet next door neighbor brought us an entire ham this morning, hot and ready with pineapple rings on top, and Nascar hats for the children. Audrey's new dolly realistically "drinks" from a bottle and sleeps and giggles; between the two babies they have not stopped playing with the doll all day. Gideon's fire engine is a "shake and go" Mater, adorable. They take turns wanting each other's toys, and the other children all loved their craft, toy, clothing item, and books.  I had simplified our gifts to just one of each of those items, and it turned out perfectly.  Everyone had just the right amount of everything today, and our cup is still overflowing with blessings!

Our homemade Christmas decorations turned out very sweet, with paper chains and snowflakes made from paper that Justin no longer needed from his work files.  Aaron John even made us a star for the top that he colored and cut out himself.

Audrey was so anxious to try one of those delicious smelling Christmas tangerines!  She loved chewing on the segments, even though she needed to spit them out after sucking out the juice because they couldn't quite get down her throat.  She still enjoyed them very much!

Opening their Christmas Eve pajamas

Christmas Eve Storytime

Santa Claus found us in Massachusetts!

The children made their own makeshift stockings out of paper lunch sacks

Audrey cooked us Christmas morning eggs to go with the beautiful ham our neighbor brought us!

 

Gideon was so excited to get his shirt with the Edgartown fire truck on it!

A special gift from her big brother, that he bought with his own chore money

 Audrey was immediately in love with her Christmas doll!

 

Gideon loved that baby just as much as she did!  He fed her and tucked her into bed with his own special blanket.

We also visited the ocean and the home of a man who had decorated his acre of land with an awe-inspiring light display.  These were all special and wonderful activities together, but I confess that the anchoring experience for me was the day this week when we visited our friends who are spending Christmas in the hospital or in the Yawkey Family Inn near the hospital because their children need to stay so near that they cannot leave.  I wanted so badly to bring them to the ocean to visit us at this beautiful home, and instead we brought them cookies and the warmth of our family's affection.  Of all the incredible families we have met and grown to love in this adventure, there are a couple of families in particular who have earned through their exceptional challenges an especially close place in our hearts and daily prayers, and spending time with these three that we managed to visit this week was the crown on my personal Christmas.

Another Dilation, and Breakfast with Santa

Sitting anxiously in the surgical family waiting room. Again. More anxious than usual today, fearful she will tear, packed an overnight bag just in case. Not even hoping anymore that she stayed open. Glad we slipped through the cracks last week with no procedure, needed that happy break. Had an incredible weekend, with one wonderful humbling adventure after another. Our neighbors here, a retired policeman and his sweet wife, invited us to attend the breakfast with Santa for the police department member families Saturday morning. Santa had a gift for each of our children, then the chiefs pulled us aside and presented us with a financial gift to help our family with Christmas. Tough to talk about, but I think everyone needs some happy news. We are so blessed with friends old and new. Please pass the kleenex.

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4pm

She's out, looks like we will get to go home tonight after all. Only constricted roughly 3mm in 2 weeks. He made some cuts in there to encourage a good kind of tear, and injected steroids into the stricture, will try again in two weeks.

In another one of our adventures from this weekend, we attended the "Dressing of the Trees" at Plimoth Plantation, a wonderful event for kids and adults alike where we learned about the historic mid-winter and Christmas traditions that would have been celebrated in the 1700s, both from the perspective of European settlers and Native Americans.  We participated in a beautiful Native American service where the four winds are individual called upon to help carry our prayers to the Great Spirit, during which we helped place colorful ribbons on a tree that were representative of the four directions and their individual qualities.  We then made beautiful little handmade lanterns and carried them to go wassailing at a 17th century home before hanging them on a tree in a beautiful European tradition that led to the Christmas trees we know today.  

  

PIZZA!!!!

This was such a quiet success story, crammed in the midst of so much other activity, but it brought me so much joy that I HAD to share with you.  These are some photos we took of Audrey's first successful bites of pizza, soon after a dilation so her throat was open enough to pass the bites she was still learning to chew.  As you can see on her face, it was a slam-dunk victory!  

Well in my opinion, that was one little finish line, FOH SHO!!!!!!