Friday, May 1, 2009

Introduction to WellSphere

As Mostly Medical Misadventures & Mishaps was just added to WellSphere (a health community full of doctors, yoga masters, and caregivers), I thought it would be appropriate to introduce myself a bit to the new readers.

I'm Round Peg Inna Square Hole, or Round Peg for short. I'm 25 years old, married to my high-school sweetheart Tuffy, and we have two children. Rorysaurus is three and a half years old, and Little Monkey is nearly one and a half. We live together in the SF Bay with my younger brother, Needlenoggin, and I'm a full-time graduate student working toward my M. A. in teaching. I plan to be ready to teach middle school when Little Monkey is ready to head off to kindergarten.

Mostly, however, I am a full-time caregiver. It is not what I had planned to be, and not what anyone whose ever met me would assume I'd become, but it is what I do twenty-four hours a day, none-the-less. No one is more shocked by it than me.

My first care-giving job was when my grandfather died. My grandmother was legally blind and unable to take care of herself, and so I moved into her home in 2000 during my senior year of high school in order to cook meals for her and keep her company. I was happy to spend the time with her, and got to know her wonderfully well, listening to her stories of the Depression, World War II and my mothers' childhood. I'd have stayed there, but I needed to go off to college, so my grandmother moved in with my parents and I headed off to school.

I married, earned a scholarship to UC Berkeley and moved to the Bay. My daughter was born in 2005, and she was a colicky screamer. She had acid reflux and screamed twelve hours a day, which wasn't what I'd expected, and she required a lot of care.

We did a semester with no sleep, she came to class with me, and we got through it.

On Mothers' Day in 2007, I graduated with my degree in English.

I was 3 months pregnant with Little Monkey, and was ready to take a semester off. We moved into a nice apartment near Lake Merritt in Oakland, and settled in for what was supposed to be the easiest year of my life.

When Little Monkey was born in December, he was diagnosed with Craniosynostois and a heart defect.

His story is here if you want to read about it. He required a craniectomy, and had a five-hour surgery at seven weeks of age.

My life sort of revolved around the little guy until his incision healed up and the swelling went down, and then I enrolled in my graduate program. He'd recovered wonderfully, and our only worry was that he'd need another surgery somewhere down the line, and he was such a happy baby that caring for him in his injured state wasn't very different than caring for a healthy infant, except the emotional drain that I felt due to the constant worry about him.

In July, two weeks after he'd been given a second surgery date, the exterior stairs of our apartment collapsed, dropping Rorysaurus and Needlenoggin three stories to the pavement below. He broke his back in several places and requires a 24 hour caretaker. Because of state budget problems, there was no funding for anything except a nursing home for him, and it took 6 months to get him to a physical therapy appointment. He came home with Tuffy, Rorysaurus, Little Monkey and I, and I started doing his stretches, exercises, medication regimen and the never-ending battle with the State to get him a wheelchair (none yet).

Read our original posts about this here. When he came home from the hospital, he needed help with everything, from bathing and weight shifts for his skin, to other medical procedures. Getting him through the day and getting all his medications into him every day became my full-time job, and it is round the clock. His mental and emotional state was fractured when he fell, and his memory has disintegrated, so he'd wake at odd hours, disoriented, and what sleep I was getting with a PTSD toddler and an infant disappeared.

And then, in September, Little Monkey had his second surgery. It was shorter, and he came out of it fine.

I'm still my brother's care-giver, and I take care of my two little kids. Rorysaur is nearly four and goes to Preschool during the week, but Little Monkey is my constant companion, coming to doctors' appointments and to the Social Services office multiple times a week. Tuffy deserves credit, and a lot of it, for being the one level head in our home, as Needlenoggin is still recovering and I'm constantly frazzled, exhausted and short-tempered. He's been my rock throughout this.

So, there's an introduction. Please, use the comments section to leave advice, tips, questions or whatever. Fell free to catch up on the previous posts, as well. God bless.