October Fun

Audrey had a wonderful late October with her grandparents visiting from Oregon for her big sister's birthday. We visited a fun place called Cornbelly's where we solved a giant corn maze and played for hours! She was miserably sick on Wednesday with a nasty cold, but she bounced back in time to enjoy a very happy Halloween! The weather was beautiful here, 70 degrees still at 9pm when we were trick or treating. Feeling very blessed.

Sick Miss

Little princess is miserable with a cold and watching movies this morning. I hope she gets feeling better quickly to enjoy the holiday fun! I'm grateful she hasn't been sick yet this season before now. She always seems to come down with everything so much worse than the rest of the family, and for some reason her digestion slows way down and we have to turn her feeding pump rate down to a crawl or she sputters and cries and refluxes terribly. Trying a new med prescribed by her new GI for times like these, (Dr H said we should always have this on our shelf for her--Cyproheptadine), and hoping she can handle a higher rate than last night.

Dancing Dreams

3-year-old Audrey has grown a new connection between her esophagus and lungs, and we are flying to Boston to have it fixed in mid January. This will be her second resection, and her fourth major surgery. Feeding by mouth is still going pretty badly--she regurgitates a lot of what she swallows. So, we're back to about 85% G tube dependence right now. But she's growing and happy and makes us laugh every day. Here is a photo we caught when we went in to hook up her feeding tube last night. I think she looks like she's dreaming of dancing, like a ballerina who fell asleep mid-leap! I hope someday she does run and dance for pure joy. Right now she gets tired easily and has a kind of funny gait, so I am worried we need to get an MRI to check her for a tethered spinal cord. We plan to add that to the list of tests they'll do in Boston before the big surgery on her esophagus in January. It's a beautiful autumn day in Utah today!

Turbulence of Heart

Waxing emotional tonight, please excuse the dramatic voice of my weariness. This thought has been churning beneath the surface all week. How do I find the courage inside to make the call to schedule this next major surgery? I've managed to busy myself out of dwelling on it most of the time, but the sinking dread and the relentless ticking of the changing season have made me feel at times an early chill of winter, and I know that the time to decide has come. Strange that nature seems to have once again echoed my heart. The fresh snow dusting the nearby mountaintops, this morning's unexpected frost on the windshield, my huddling against the warmth of my husband's back at night...can it be only October second? I reveled in the golden sunshine this evening that seemed a merciful wing protecting us from the black clouds to the South. Sometimes it feels so selfish to ask this again and again when there are so many pressing needs out there, but please pray for us. I look at my children and a part of me weeps with the impending mountains of pain that Audrey must still climb, and the impending loss of those days together with the other fantastic and fragile, fragile and fantastic four, the unknown length of time we'll be apart and the ways they'll need that particular touch of their mother in their lives, the way mom knows just the details to watch for to correct, comfort and counsel. I look at my amazing husband who works so hard for very long stressful days to provide, then comes home and comforts children, cooks better than I do, repairs our old cars and even older house, is everyone's favorite, gets little sleep and almost never complains. My hurt is full to bursting with love for them all, with the desire to protect and to heal and to fix things that cannot be easily fixed, and my soul cries out with all of my strength, Dear God, please protect this family.

Parenchymal leak, say THAT 3 times fast

Hurtling toward Oregon with all five kids in tow after a week chock full of commitments and preparations (one of the crazier of which included extending the height of our chicken enclosure to keep them from flying over)! Looking forward to my 20th class reunion this weekend, visiting Justin's parents for several days in NoCal and hopefully helping them out more than hindering as Dad R recovers from knee surgery, and then back to Portland where we will shoot the photographs for my cousin's beautiful Indian wedding. I drove most of the 14 hour trip while Justin managed the busy backseat crew (I had the easier job). Munching on dried apricots and listening to my choir part for the Bach Magnificat on repeat for hours on end--far from boring as that might sound, I'm super stoked--this might be the most melodically complex piece I've ever performed. (Seems kind of fitting given the current complexities of life.) It makes me think of that classic 80s toy that I loved, with four colors of buttons that played tones in a complex sequence that you had to remember and repeat back in order to win. I'm determined to win! (So if you see smoke coming out my ears don't worry, it's just my inner computer crunching though the choir homework.)

Learned more from Audrey's doctors this week about the specific type of complication she has in her esophagus repair site and the unusual surgery they plan to do to fix it. Dr J says it's a parenchymal leak, and he wants to cut out and reform half of the esophagus rather than a full re do, curling the new set of sutures away from the trachea to discourage this from occurring in the future. Because Audrey is keeping her lungs fairly healthy so far, we have their blessing to plan the surgery around our family's needs, which is a huge relief. Right now we're leaning toward January, but still discussing and praying about it the next couple of weeks before putting that in stone. Thank you for your continued love and support!

Make Mine A Super

Audrey was a super champ at the dentist; for the first time she let them do an entire exam on her teeth! Then she amazed me again when I took her to the store afterward to choose some underwear--you guys understand what a big deal it is for little kids to choose which character is on the underpants, right? Total rite of passage. Anyway, more than all the cute little girl characters available, she wanted the superhero ones! My girly girl, Princess of all Things Pink is definitely embracing her mighty side! So instead of Elsa or Dora or Disney Princesses, she's feeling very proud about Wonder Woman and Supergirl. It made me laugh and cry a little because it seemed so perfect that my little superhero knows how she rolls.

Adventures Before Departing

Yesterday, on our last day in Boston for this trip, Audrey was recovering very well from the anesthesia and after a good 12 hours of sleep she was ready for a relaxed adventure in her stroller. We bought blueberries for her lunch at the Haymarket, sushi on the North End for mine, visited the rose garden at the waterfront and caught a ferry to Boston Harbor Islands National Park. On Georges Island we explored an old fort and attended a free classical string quartet concert by the Berklee School of Music (which I'd heard about from a guy wearing a Powells Books t shirt while waiting in line for the ferry). On Spectacle Island, she fell asleep and napped peacefully while I explored the visitor center and then hiked the long spiral around the island to the highest point in Boston Harbor. She woke up in time to enjoy the view with me. The boat ride itself was exhilarating--the perfect weather, the thrilling wind that broke up the heat, and the smell of the briny sea air all combined to give us such a feeling of freedom from worry. On our way home she saw the horse drawn carriages and asked me so sweetly that we decided to gift her that special experience. We wrapped up the night with a fun dinner out with our wonderful host family, and Audrey has been a traveling champ again today. She was a total nut on the plane, playing very cute games with her infamous "Pink Blankie". Our 3 hour layover in Chicago is nearly at a close and she has been napping peacefully for most of it. One more plane, one more train, then looking forward to resting in the arms of my family tonight and celebrating Aaron's 10th birthday tonight with his special request-- homemade pumpkin pie (made with our own chicken eggs). Feeling more thankful than I can say!

Climbing the spiral path to the beautiful vista at the top of Spectacle Island, the highest point in Boston Harbor, and historic town-dump-turned-gorgeous-nature-preserve.