Busy day

First stop today was the cardiologist which we’ve all been pretty anxious about.  Girls with Rett have an increased incidence of prolonged qt interval (a doctor’s words, not mine (though I have been repeating it like I have any idea what I’m talking about)) and we had to get an EKG to see how she[…]

Remaining Optimistic

The key to any real optimism you can sink your teeth into is a healthy dose of denial.  The more you believe one, the more you can latch on to the other.  I believe she can get better. I believe she won’t suffer. I believe we can fix this. Who’s with me?

Great Friends

This is the letter we sent out to our families letting them know about Maggie.  Some of this references a website that hasn’t been set up.  In truth, I’ve been keeping this blog going without telling my wife since she hasn’t been ready to share the story yet. {{UPDATE}}Most of this we wrote well before[…]

Formulating a plan

I’ve always been a fixer.  I’m not handy.  But I’m a creative problem solver.  That’s really the only thing I’ve ever been really good at.  This thing that our little one is dealing with is the world’s worst problem.  At least it’s my world’s worst problem.  It’s the type of thing that may or may[…]

New world

Now that we’re back we’ve started talking to people about it and that’s allowed me to loosen up a bit.  Though people apologize as if it’s the end of the world.  I guess it’s a testament to my current state of mind that I don’t think if it as the end if the world anymore.[…]

Balance

We’re also painfully aware of the importance of balance in our lives. Forcing therapy all the time is not a life we want her to live or we would want for ourselves.  But at the same time if she doesn’t use it she loses it.  So there’s urgency to make her do hard work all[…]

Amazing every day

I keep repeating the just a label mantra to the point where I’m actually believing it now.  Today she was swinging on a band swing-the same swing typical kids have been swinging on forever.  She held on tight and stayed on for 10 minutes easy.  They told me she’d never be able to do things[…]

Heading home

With a bit of a heavy heart we leave our family in Texas today and head back home to California. We’ll be her only caretakers now and there will be little to no break. We’ll miss granny and pops and her aunt and uncle. She’ll miss her cousins a lot. At least we will be[…]

Meeting with Dr. Motil

Tomorrow’s the day.  Wish us luck. I know we’ve both been anxiously awaiting the opportunity to meet with the Blue Bird doctors since we found out and I’m not quite sure they’ll be able to meet expectations.  We have our appointment with Dr. Motil -GI/nutritionist – tomorrow and then we have an appointment with Dr.[…]