Monday, April 21, 2014

1267 steps forward...Couple steps back

Munchkin is on the move. She looks like she's had a few too many most of the time, but she is getting better and better at walking. Considering where we were a year ago with brittle bones, fractures, and zero weight bearing, this is a pretty amazing deal!

Developmentally the kiddo is bright. You ask her if she is silly and she says "no, chaia lippy, sassy, ham." Yes she refers to herself in the third person.

It's what divas do.

It appears that the pseudo tumor in her head has returned as an emergent issue. The pressure has apparently rebuilt since she had the spinal tap to alleviate the pressure last July.

We head to the Cleveland Clinic tomorrow for a check in with the neurologist to consider upping the dose of a med to try reduce swelling medicinally rather than with procedure.

We are hopeful that it will be fairly straight forward with how to address. The question mark is why she has it and why it keeps coming back/swelling.

If it's not addressed, blindness is a real possibility.

But we're not there yet.

This is the road we're on.

Much good. Some hard.

But resurrection reminds us that the worst things don't have to be the last things.

We are trusting that God is continuing to work in this story. And so we take the days just as they are designed to be taken.

One day at a time.

Chaia STILL wins when we kneel

1 comment:

Anonymous said...

We are all still kneeling for Chaia and her journey in life.Prayers for the family also.