Author: ajtesler

I tucked my daughter in for the first time in over a year today. She likes to rock, so tucking her in has been impossible. See: But I used a king sized sheet and tucked her in so tight she Continue Reading

We’re grateful that she can do this.  Not all girls with Rett can.  It just goes to show that their only real limitations are our own self-doubt.

We’re having a tough time deciding between school options right now.  The IEP we got, which is an evaluation from state funded therapists, recommends literally no services for a girl who needs intensive therapy in order to continue to progress.  Continue Reading

I’m going to keep a running tab of the things you can do to help cure this disease.  It’s honestly in our power to cure this.  We just need to refuse to concede.  And come up with more than four Continue Reading

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 Continue Reading

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 Continue Reading

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 Continue Reading

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 Continue Reading

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 Continue Reading

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 Continue Reading