Musical Performance

A month before the little ones were due to perform their musical performance at the High School auditorium a note came around asking for volunteers to help set up.  Seeing that the big girls were due to end their day at 11am, I thought sure, I can help set up, no problem, I just might have to leave early.

As the day approached, we learned that the grades would be ascending during the duration of the concert.  This meant, that if they ran too far behind, I would be missing William's to leave and gather the big girls. = (

All the same, I did help set up, and took a picture of an Alto Xylophone (since Emily is an E flat Alto Saxophone player. lol.)  Our job was putting signs up on the seats so that the classes would know where to sit!

The ukuleles also made an impressive arc!

Kindergarten and first grade both took a long time to switch from their seats in the audience to their places on stage.  I was very concerned that I wouldn't be able to stay for William.  Luckily, by the tiem they made it to third grade, the kids transitioned much faster! 

Grace and Juliet's grade sang a song and then played a song!   Grace and Juliet were hidden from my view by the ukulele players, so I only successfully got pictures of their singing.

William's class played instruments and then did a dance.  The dance was very quick, and full of movement, so I wasn't able to capture him in dance, just playing the xylophone with Weston.  = )

They finished the performance with plenty of time to spare, I even had time for the auditorium to empty and help clean up the signs!  Then, off to pick up my big girls on their last day of school!

later days

edit: written 6-16-23 and backdated for continuity. 

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>

March 5th

The high today was 49F.  It was sunny with no precipitation, and a light breeze.

I visited a Mops group that meets the opposite Thursdays from the one I've been enjoying since moving to Michigan. I was hoping to find some more moms that live in my village.  I didn't succeed in finding any, but I did find some Supernatural fans! In real life!

It was an early release day, so the kids doubled up on homework so that tomorrow we can go to McDonald's immediately following school.

For dinner we had oven baked hamburgers.

later days