Emily's MRI

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

Today Emily had her MRI up in Grand Rapids.  The appointment wasn't until 11:30, so Emily had time to finish up her school work before we left.

The hospital was not as busy as it was before Corona, but busier than our previous trip.

We wore our masks, as required, but they had us swap for hospital masks upon entry?

In radiology we had a little bit of a wait.  Emily replied to her teacher (via snail mail,) then worked on some mind puzzles, then colored the back of some papers I had in my bag.  

Once it was finally time to head back, she had to change into hospital garb and pick a movie to watch during the procedure.  I recommended one that she had seen, since she would not have time to finish it.  She picked Frozen. = )

I did my best to prepare her for the procedure, telling her that she would lie on a board that would slide into a giant 'donut' and it would be really loud.  When she saw the machine she said "it does look like a donut!"

They put on a headset and optical set so that she could watch the movie during her procedure.  I had to wait in the changing room (they did offer for me to go back to the waiting room, but it was further away.)

Once she was all done, we were good to go!  This was the longest I had worn a mask at any point since this started, so it felt good to take it off in the "safety" of my car!

Sonic was our next destination, since I needed something to look forward to about this trip.  We managed it in a short time, but with the interstate closure, traffic was truly traffic!  I felt like I was merging back on to beltway 8!

While we were waiting in the drive thru, the hospital called to let me know that the next endocrinology appointment will be virtual.  They gave me some instructions on how to enroll the kids (all 5 of them!) ahead of time.

I got another call, also from the hospital, letting me know that the doctor had reviewed Emily's scan and that everything looked normal.

It was a really nice surprise, since I figured we wouldn't hear anything for a while!

So, good news, it's probably not seizures, bad news, we still don't know what is going on with our Emily.

later days

<what happened previously

what happened next>

Grand Rapids Appointment

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

Yesterday I said that when I chatted with the scheduler at the doctor's office, they hadn't yet finished the schedule for virtual appointments, and that I should be expecting a call.

So, today when the phone rang with a Grand Rapids number, I was not surprised.  However, the scheduler informed me that her neurologist had reviewed her chart and was anticipating us coming in to the office. = ( I'm so heartbroken.  

With the outbreak of the coronavirus, only essential travel is allowed statewide, and they have a strict one visitor per patient ratio in place at the hospital.  So, them expecting us to come in must mean that Emily's overall health is dire enough to take the risk.

So, next Tuesday Emily and I will leave the safety our house, and will hopefully know more when we come home.

later days 

<what happened previously
what happened next>

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.

<what happened previously
what happened next>