How can it have been six months since I last posted? Maybe this is the season of Caleigh's blog? Maybe this is the growth and privacy we all crave in an over saturated internet life.
The truth is that graduate school is more responsibility, time commitment and emotion than I had envisioned. After completing the first year of my MFA program, I left for 16 days in Italy. I wrote a proposal and it was accepted giving me the grant money to travel with. I've never been away from Caleigh that long. Cue the Mom guilt, but it turned out to be a magical trip with art history, gluten free food, architecture and cultural growth. I took more than 2000 photographs and I can't wait to edit them. With amazing supports here at home, Caleigh did great while I was gone. We are so lucky to have a team of people in place that care about her wellness and happiness the way that they do.
Now for the updates...
This April we traveled back up to Boston. The CAIR team loved how well Caleigh is growing, absorbing nutrition and thriving. The short bowel syndrome surgery of last summer continues to be a success. Our memories are fading and life is continuing to move on from that time. Caleigh still takes a one week round of antibiotics for bacterial overgrowth every month. They've cut her calories by 5% and have suggested trying to wean her off of the Nexium. We haven't started the wean, but summer looks like a nice place to start.
Endocrinology is still watching Caleigh's growth, bone health and puberty with no changes.
We saw orthopedics in Boston for the first time this April. We've known that Caleigh will need hip surgery for several years now, but we wanted a second opinion on the procedure. What we discussed varied from the options here in Texas. We have an appointment this June with our local orthopedic doctor to go over the differences and help us make a decision on the location of the surgery. Boston would look like a month stay and home, well, it would be at home. It was suggested that the surgery be complete within the next 6-9 months.
That's Boston. We went to a Red Sox/Cubs game while we were in town. The weather was perfect while we were there and Caleigh loves traveling to Bean Town. She loves talking about Boston and it truly is an adventure to see her doctors. She doesn't dread it and neither do we. It's a warm comforting feeling.
Fun highlights that have happened since December:
1) Caleigh received her second powerchair. This is the M5 Corpus. It's fancy, smooth and fast. It had been 7 years since Caleigh got her first chair. We had so many issues with joystick access and over the years tried many different solutions without much success. The new chair has its own challenges so far, but Caleigh loves to move on her own no matter what that may look like. We even have a large hole in our wall courtesy the new chair and its 9 year old driver.
2) Caleigh played Miracle League baseball again this Spring. I have a feeling that this will be a constant in our lives for a long time. She loves everything about it except the sun in her eyes.
3) This winter was illness free! We had such a mild winter here in North Texas and Caleigh stayed well the entire time.
4) Caleigh continues to go to horse riding once a week and Dad has really picked up the transportation and volunteering portion of that activity this year. Go Dad!
5) We wait, discuss and hold our breathe on legislation, current bills and our crazy healthcare system. Big changes started back in November with Texas contracting out children's Medicaid. It's been nerve racking to think about. Trump's proposed Healthcare bill that passed the House would be devastating to Caleigh's medical care, but I try not to think about it everyday. We will take it as it comes. We've experienced cuts to Caleigh's MDCP budget, and therapies so far. I'm hopeful that more doesn't come our way.
Things have moved fast and typical with no hiccups during the first part of the year. We're sticking around the house this summer working on projects, swimming and relaxing.
I'll say it again on here, but Instagram is my method of social media. A quick photo of our girl or anything art related seems to be what I can put out there right now. Two years and counting until my degree is complete.
An ongoing series of waste collections from medically fragile individuals over a 24 hour period.
Last Fall I started the One Day Project. I'm asking those of you with medically fragile children or family members to collect the waste from a 24 hour period and send it to me. With this shipment I then curate a photograph and installation. I will send you a print of your One Day and postcards that can be mailed to anyone you chose including your representatives. My goal with this ongoing project is to have hundreds if not thousands of these portraits. Please visit my portfolio for more information on collection and shipping details.