Tuesday, June 17, 2014

Steps forward

Whoa.

It's been like three weeks since I've been around the blogosphere.

But what a whirlwind those weeks were.


Ironically, right after I posted this Maisie developed a minor cough. We started all her regular treatments and maintenance meds for breathing and she seemed fine enough. On June sixth she went into the craziest coughing fit I've ever seen. Nothing -- not the nebulizer, not the inhaler, not patting her on the back or holding her upside-down (yes, really) -- calmed her down. She was coughing so hard she threw up twice and gave herself a seizure. After the seizure I rushed her to ER where she was given a steroidal anti-inflammatory. Turns out she had a pretty sever case of bronchitis, the symptoms of which we had kept under wraps with her breathing treatments. So she spent a few days in the hospital recovering from bronchitis and then a few more days sprawled on the couch looking a bit like that.

Since we were just at the pediatrician for a follow-up to the hospitalization, I want to give you a quick description update. She weighed in at 26 pounds and 34 inches. So she's growing!! She's still the size of a small two year old, but she's growing! She's been back to herself for the past week or so, and otherwise she's doing really really well.

So well that she took three steps on Sunday.

As you may know, she's been in physical therapy focusing on two things: walking with a walker and sitting up. For months she could not sit or walk at all, and after we started working with Drill Sergeant June she still could not sit up unsupported for more than a few seconds at a time, both because her balance and muscle tone were very poor. She could walk for three to five minutes in the walker. The longest she ever went before going completely limp was seven minutes. Over the past month, since she started treatment for myasthenia gravis, Maisie has been able to sit up on her own, with no swaying or toppling over, for up to half an hour at a time. She has worked up to ten to fifteen minute walker-walks and finally, on Sunday, we challenged her to walk. She looked so strong standing by herself, holding the edge of the coffee table and nothing more for support, in huge baggy shorts and nothing else because it was darn hot out. My princess, my angel, my Maisie the Great walked on Sunday. June is going to be so proud.