Looking for answers

Thank you to everyone who has reached out or left a comment or sent a note.  We appreciate hearing the words of encouragement.  These last few weeks have been difficult watching Maggie struggle as she has.  But we’re fighters and so is she.

In the middle of watching Maggie lose her balance, we also had to find answers,.  In the last 10 weeks we’ve consulted with 2 ER doctors,  2 pediatricians, 2 neurologists, 1 cardiologist, 2 Physical Therapists, a nurse practitioner & 1 occupational therapist.  We put her on lexapro, we put her on amoxicyllin, we took her off those things.  We checked her heart, her ears and her Phrenic nerve.  Nothing helped.

It’s not a tragedy yet.  We’ve seen her regain her strength for short periods of time.  We’ve seen her run and skip on occasion.  We know Maggie is in there.  We just have to give her time and encouragement to do the things we already know she can do.

I wondered last week if “It was starting to go”  I think Rett Syndrome does that to you.  You’re never sure what’s around the corner.  Is it going to be worse tomorrow or better?  Is she going to do something you didn’t think she’d be able to, or is she going to stop doing the things you know she knows how to?  We’ve heard stroeis of families who put their daughter to sleep only to have her wake up the next morning not knowing how to walk.  But, we’ve heard just as many stories of triumph as daughters who forgot how to walk have regained the ability.  From what I can gather, it’s not the parents.  It’s not the girl either.  It’s each individual person’s version of Rett.  Some respond to therapy, some don’t.  Some will grow, some will not.  Just one more thing about Rett Syndrome that keeps you in a constant state of readiness and discomfort.

But as long as Maggie has fight in her, we will fight right alongside her.   And honestly, even if she doesn’t have fight, we’ll still fight.  She deserves nothing less.

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