Emma's Grace

Ok.  So I’m a bad blogger.  We all know this.  It takes me forever to get the posts out there.

But, if you look closely, you’ll see me gliding across the floor.  A huge weight has been lifted from my shoulders.  It was weighing me down so much, that now that it’s gone, I don’t know what to do.

As part of the long process of trying to figure out what is really wrong with Emma, we do lots of tests.

However, after our false diagnosis last Christmas, Dr McCormick had decided to do 1 test at a time.  No more taking chances of getting a false anything.

We’ve done a macroarray and a microarray of Emma’s chromosomes.  Both came back normal.

The next test was the Retts Syndrome test.

For those of you that don’t know what Retts is, let me tell you…

Loss of fine motor skills, gross motor skills, and speech, among other things.  There are various degrees of loss of course.  There is no loss of cognitive abilities.  But worse case would be confined to a wheelchair.

Add that to her extremely poor vision.

If you really think about it, which is all I could do, it meant Emma, growing up, walking and talking, only for it all to degenerate down to nothing.  No walking, talking, smiles, or vision.

I was positive that this was what Emma had.

Hand wringing or keeping hands in the midline excessively.  Emma kinda fits into that.

Head growth will plateau.  This has been happening.

Teeth grinding.  She is constantly clicking her front teeth together.

Sleep problems.  Not entirely a problem, but the girl just won’t nap some days.

And of course the seizures.

There are more, but those are the ones she fits in.

4 weeks is a long time to wait for results.  4 weeks of wondering, wishing, and crying.

Thankfully, the results are in and they are negative.

See, that’s me floating with that silly smile and happy tears running down my face.

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About a month and a half ago, I took Emma to see Dr. Baker again to look at her eyes.

After her exam, he told me that he once again thought she could not see more than light and movement.  And at that, it was inconsistant.  He had said at the previous visit that it was possible this was due to any seizures Emma may be having and also due to the medications she was on.

And now 6 months later, he was telling me that even though she was not having seizures and she was down to 1 medication, she still couldn’t see.

Ok, so I thought I could handle that.  Not a big deal.  We’ll wait until the next appointment and see if it gets any better.  Except he didn’t think there was anything else he could do for her.  Her globes looked fine, as did her nerves.  We were to come back in a year, unless something drastic happened.  He directed me to an organization called ROPARD.  They assisted families that have children with Low Vision.

So I went to ROPARD and spoke to one of the nice ladies there.  Since Emma did not have an official diagnosis about her vision, we spoke as if Emma had been diagnosised with Cortical Blindness.

And there it was.  The B word.

My baby girl was blind.  Not truly blind.  She had some sight.  But I hadn’t thought about that possibility.  I hadn’t let Blind enter into my mind.  And really, we hadn’t reached that point.  There had been no mention of Cortical Blindness.  But what if….  How our world was going to change.

We had spent 2 hours in there.  I spent it talking and learning.  She spent it looking at toys and falling asleep.  After I left that office, I walked out to the van.  I put Emma in her car seat.  She was still asleep.  I sat there for 5 minutes and sobbed.  Could I be strong enough for my girl?  I didn’t know, but I was going to try.

I had already taken a letter from Dr. Baker to Emma’s teacher at school that stated Emma’s vision problems.  We had already had the Vision Impairment (VI) consultant come out and see Emma for an evaluation.  She was already going to receive VI services.  We were moving in the right direction.

ROPARD had referred me to Dr. Ferrence at the Ferrence Low Vision Clinic.  I was told that Dr. Ferrence was an excellent doctor and was great with kids, especially non-verbal kids.  I called and made our appointment for November 4.

Sadly, November 4 came, and Emma wasn’t feeling well.  I had to call and reschedule her appointment.

We rescheduled to today, November 11.

We were told that there would be a lot of information and, if possible, to bring a tape recorder.

There was a lot of information.  We did bring a recorder.  And as soon as I collect my thoughts on what all happened, I’ll post a summary.

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I know this blog is about Emma, but I posted an extremely cute video of Matthew on my other blog.  It’s so cute, that I had to come over here and tell you about it.

Go check it out!

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