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.