March 6th, Results from the EEG

This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia. And now adding Emily to the list.

The high today was cold windy, cold rainy, cold snowy, cold 35F.

Today we woke up slightly early, so that I could go help out at the book fair. For the first 15 minutes, mine shopped. So, they were ready to go once breakfast started. = )

Once school started only a few students trickled through. At 10 I left the fair in the capable hands of the librarian (who had worked the register most of the morning anyhow.)

I left for the Hold UMC church sale straight away, and met my mother in the parking lot. We collected lots of treasures in our $5 fill a bag. = ) Surprisingly, I only spent about an hour shopping, so I had time to come home and sort before going to collect my children from their second half day.

My mom invited Juliet to spend tonight with her, so I packed her an overnight bag before I even had a chance to ask if she wanted to go. Thankfully she did!

As my crew loaded up they were very excited about our planned McDonalds lunch. And, I had a surprise up my sleeve. Juliet's BFF's mom messaged me back about joining us, so we were able to surprise our Kindergartners with a playdate!

It was a pleasant way to spend a couple of hours. The kids played (and kind of ate) and I got to chat with a new mom friend!

While we were there the call to set up the next medicine order came in, and then the call I'd been waiting on, that met my worst expectation came in.

It was the kids' primary care doctor (never ever good) on the phone.  I knew she wasn't calling to tell me that Grace had strep, so the dread set in fast.  She looked at the results of Emily's EEG from January*.  Their were indications of misfiring** in Emily's frontal lobe while she slept.  She's referring us to a Neurologist in Grand Rapids.

I don't know how long it will take to get Emily established as a new patient.  Googling misfiring of the frontal lobe did little to calm me during this next wait.  Emily is handling it exceptionally well.  In fact, she hasn't even brought it up again since I told her.

Emily has hypophosphatasia. Seizures can be a symptom of hypophosphatasia. Please let it be caused by hypophosphatasia and not something new or worse.

later days

*I started trying to get the results about 2.5 weeks after her test, but I was calling the Endocrinologist, and since she didn't order it the results weren't send to her.  Their PCP is on a different network, so the results weren't automatically sent to her either.  Their office had to call and request the results, which took extra time.  So, it has been a very long wait for bad news.

**I'm 90% certain this is what she said, but I was not in a position to write anything down, so if her terminology varied from this, this was what my mind extrapolated.

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