Emily's Anticlimactic Follow-up with the Neurologist

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 we met with the neurologist. Parking was a breeze, fees were waved.  There were no other patients in the waiting room. We had very little interaction with anyone, though we did have to check in and get a 'visitor' sticker before heading to the appointment*.

This was Emily's initial visit with a neurologist, and William is the only other child of mine who has seen a neurologist, for fear of seizures.

After interviewing me, and her, and asking a ton of questions, and reviewing her EEG, his current opinion is that she is having anxiety, not seizures.  Seizures in HPP patients tends to be very apparent in their alp and B6 levels, and she has normal range in both of these.  I'm not completely ready to accept that it is not HPP related, especially with Billy's symptoms.  But either way we have to wait.

He has recommended some literature (that I've now ordered) so that we can treat the anxiety, but we are to follow up as needed.

This is good news, I guess.  The EEG is a test that can be 'interpreted' and therefore can be misconstrued or misread depending on the doctor.  I'll be keeping a log (something I'm actually pretty good at) every time she has an episode, and we'll work through the literature just in case.

She is scheduled for an appointment with the endocrinologist in early June, so we will revisit this then, unless something major happens to merit a visit.

So, today, I'm left with the impression that we travelled close to three hours and exposed ourselves to the nasty coronavirus, for an appointment that could have taken place virtually.  And we know nothing new. = (

later days

<what happened previously
what happened next>

*Sarah gave us some masks that Emily sported during our trip!

March 31st, 18th day of "Safer-at-Home", Day 12 of School at Home

The expected high today was 42F, which is awesome because it matches the day of March it is.  (not really, but man does this month feel like it's dragging along!)

Since Emily's appointment wasn't until after noon, we had plenty of time to knock out some homework this morning.  I waived all piano practice, because we did not have time for that.

Today was pretty tame, with the exception of Emily's appointment and subsequent zoom.

The kids are apparently not hungry unless I'm home... so they ate the strawberries, grapes and apples I left on the table and ? for lunch.

They all were excited about the freezer meals I picked up at Carl's today (since we were desperate for bread I made a second grocery run.) Billy had the mac and cheese I picked up for him too = )  So, that was a very late lunch morphed into dinner while they watched Barbie ninja?

The kids' group at church had a 'challenge' video with a cool science experiment in which most of mine partook!

A stink bug invaded, making some screaming and crying prevalent enough that Emily had to end her call with Cali.  We managed to extract him, but not without screams and tears. = 0

It was an early bedtime for the "I'm not tired" twins.  I think they panicked with Emily and me out of the house earlier in the day, and were extra tired.

Our governor has still not made an official decree on school closures. We are expecting an announcement Thursday. Right now Texas is officially out until May 5th.  In the history books "2 years" never seemed that long for resolutions, but let me tell you, living it 2 years might be an eternity.

later days

March 30th, Essential Trips Only: Day 17; Day 11 of School at Home

The expected high today was only 43F.  It was cloudy and cold all day, with a decent wind, so it felt much colder.

My day started poorly with standing water in my dishwasher.  I called the warranty company, and they were able to send the tech out between one and five, today. what?what?

The kids got quite a bit of their work done before 10am, when I set William up on his Zoom call with his class.

I headed out the door to run the recycling by Sarah's and grab the groceries. Kroger was not nearly as busy as it's been, and I was there at the pick up with only one other car.

After that, I dropped some elastic from my stash in a bin at the high school. (They requested donations for the 3D masks they are printing for doctors and nurses.)  I also dropped a small load at the food bank.

I made it back to get the twins logged in with their friends at noon.  Juliet kept trying to chat with her BFF and was so sad that the call ended before they had time to chat.

For lunch the kids made some sandwiches and I fried up some yellow squash. yum!

Not long after the groceries were put away, the repair man came.  The pump was broken. = (  He had a spare one on him, and by the time he left it was up and running!  Yay repair guy!

I messaged back and forth with Kennedy's mom, so she and Juliet were able to zoom until my phone was about dead! = )  It was so cute, they were showing one another all of their special 'treasures.'  Next time I will try to set her up on the gypsy again.

Emily wanted to go on a bike ride, so the two of us made a path around town.  It was a chilly day, but we have enough hills that we were plenty warmed up by the time we made it home.

For dinner we had tacos, since they had tortillas this week (but no bread for us.)

Billy's Anniversary gift arrived.  It was so apropos for this year, I couldn't resist!

Tonight we got word that it is very likely that the kids will not return to school (it is still not official, but everything is pointing that way.)  They will all "move up" next fall with no conclusion to this year. = (

I am struggling with so many emotions.  Right now, I'm just feeling robbed.  I'm so sad that my 'golden' year ended so abruptly, and that Alice will never be in elementary again.  Alice didn't get her send off, or fourth grade trip to the wildlife center.  Emily missed out on a week long field trip to the capital to learn all about Michigan history, and she will never be able to make that up.  William will not get to finish his year with the.best.teacher.  And my twins, well, once again they will not get to finish a school year with their sweet, wonderful teacher. I will never have a kindergartner again.  There was no move up day or chance to say goodbye.

I'm sad about missed opportunity, but still applaud the leadership doing what's best for the majority of the population.

Tomorrow is Emily's Grand Rapids appointment, but it's not until the afternoon, so we should have a normal morning.

later days

March 29th, Day 16 of Isolation

The expected high today was 49F.

The day started out wet and chilly, but with no need to dress and hurry out the door, we 'attended' early service this morning.  It was communion Sunday, so we ate the sacrament in our home for the first time ever!  It is a very weird time.

But right after church service, the sun showed up with it's rays of warmth, Emily asked to go on a bike ride.  This was Billy's inaugural ride on the bike I procured for him last fall, so he aired up all the tires that were in need.

It was very windy last night, so while Billy filled up tires, my helpers and I picked up some fallen branches and sticks. = )

Emily rode up to the school with her training wheels, but had me take them off as soon as we got there.  She's now comfortable enough to keep them off!

It was a windy trip! We saw a tiny bit of sun, while we rode around the empty elementary school parking lot. But, by the time we were heading home, the clouds blew in and it started to sprinkle and get us all just a little wet!

There were lots of people out walking and biking and running. Also, a surprising number of people driving?! On a weekday I would expect more traffic, but everything is closed, and even places that are open somedays, tend to be closed on Sunday. Where was everyone going?

For lunch I raided the fridge to heat up leftovers from the week.  Now we have plenty of space for my grocery run tomorrow.

I reviewed lesson plans for the week and update our schedule.  Emily, William, Grace and Juliet all have Zoom meetings this week at one point or another.  This is our last week of school at home, next week it is time for Spring Break II and then back to school*?!

At 7 I chatted with some local moms via Zoom and it is so comforting!  And tonight the president issued an order that the country should continue distancing until April 30th**. 

It's shaping up to be an interesting year.

later days

*In an interview, the governor made some remarks that school would likely not resume this year, in a brick and mortar capacity, anyhow.  But as of right now the official word is that the will resume school on April 14th.  

**but as of the time of this post, nothing official has come from the governor or school district.

Home Wine "Tour" #2

This week it was Billy's turn to pick the wine.  The porch furniture at the venue looked exceptionally familiar, they must have ordered the same online kit as our last tour. ; )

A picture from a generic vineyard (not this particular California vineyard) made for a pretty vista while we still had some natural light coming in.

It was late in the evening, so eventually the electric candles filled our tiny little laundry room with flickering light.

Augment was on the menu, and a few pretzels to enjoy as well.

Both of us enjoyed this wine, would definitely buy it again.  Next week is my turn again, depending on the weather, the venue might look familiar, again. = )

later days

Check out last week here!

March 28th, Living the Quarantine Dream, Day 15

The expected high today is 56F.  Alice woke us in the night when a thunderstorm blew in.  It was a rainy and cold start to the day.

The kids received some packages from my moms church, which included some cards they could send to a member missing out on social time.  Emily made a fancy pop up insert, William had his sealed before I could see it, and the twins were excited to let them know it was almost their birthday. = )

William helped me wrap up and decorate some birthday gifts for the twins.

My phone reminded me, again, of the anniversary trip that we are not on. = (

And Emily set up a game of "Not Parent Approved" that we could play virtually with Cali.

We only played to five winning rounds, and Emily won!  Next time Elizabeth wants in too. = )

For dinner Billy grilled out some hamburgers, since the rain had mostly passed.

After dinner Emily, Grace and I went out to wave to our neighbors.  There were more people out tonight, and we did a little sidewalk art.  I forgot my phone, and by the time I made it back out, the clouds were sprinkling again.

And, Billy set up our second wine tour, in our favorite new date spot.  = )

later days

March 27th, 14th Day of Being "Safely Tucked Away," 10th day of School at Home

The expected high today is 51F, but it is really chilly outside.  It was grey and overcast all morning, the sun only started to peek out after lunch.

We were hard at work on school work before the normal school day would have even started!

The weather cooperated, and the kids were able to play outside for both recesses.

Fender is offering 3 months of online lessons for free, thanks to the coronavirus, so Emily pulled back out her ukulele to practice (at least for now.)

I got a call confirming Emily's appointment next week.

For our art project today, we made a cardboard band!  The kids had fun pretending to jam (Alice was the least enthusiastic participant.)

Everyone else wanted a picture with their instrument after the session!

Juliet was on keyboard:

William loved being the drummer. = )

Our left-handed bass player is very serious about her music.

And our lead singer had already 'upgraded' to a wireless mic by the time her picture was taken. ; )

A while later, the twins dug back out their instruments (from the recycling pile) and gave an after party concert. ; )

For dinner we had some of Billy's gumbo!  Alice is the one who likes it the best with all the shrimp.  Emily requested plain rice and sausage before I tossed it in the pot. = )  The other three had just made themselves some sandwiches around 4, so they were not the hungriest.

At 7, I went to wave to our neighbors from the driveway, but only one of our neighbors came out.  Hopefully there will be some more tomorrow!  Emily came out with me and waved from the other driveway so that my trip out was not without cause. ; )

The rest of the evening was pretty unremarkable.  Just another nice slow friday night.

later days

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 

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March 26th, 13th Day of "COVID Bonus Time!", Day 9 of Work at Home

The expected high today is 53F.  Rain is in the forecast, but we managed both recess outside.  Their bikes are now officially out for the season, apparently! = )

We had Grand Rapids doctor trip scheduled for next Tuesday, Emily in the morning and the other 3 in the afternoon.  I called today to see if any of those were still on, and as it stands now, Emily's might be a virtual appointment and the other was mistakenly moved to June????????

I called in last month to reschedule their neurology appointment that was in late June since, I'd inadvertently scheduled it during our Great Wolf Lodge trip (that may or may not happen.) And instead of moving the neurology (which is just a yearly check-up) they moved the ophthalmology appointment which is one the kids have been needing for an update to their glasses prescription.  oh, bother.

So, as of now, we only have one appointment (maybe?) scheduled virtually for next week, and will have to worry about rescheduling the others once life gets back in gear.

But, in happier news, we had our first MOPS virtual meeting!  It was supposed to be spa day, but, well, you know, corona virus and mandatory social distancing kind of interrupted that.  So, we had some lovely ladies who donated giveaways and showed us how to work them too!

William's class met up at 10am via Zoom, he was all smiles as he met up with his classmates, but I couldn't take a picture since he was on my phone. = )

After that my table had a 'zoom' meeting that was only interrupted several dozen times by several dozen kids. ; )

Today's art project was to draw Skippyjon Jones to mail to William's teacher.

It rained a little when Alice took the trashbin to the curb.

For dinner we had chicken skewers al a penne alfredo.

Then we had a dance party. And tonight I learned that my children prefer hard rock (AC/DC) and 80s pop (tommy tutone) to 90s grunge (soundgarden) during a dance party.

later days

March 25th, 12th Day of "Into Hiding We Must Go," Day 8 of School at Home

The expected high today is 56F.  Alice said she heard a bird twittering outside the window this morning.

Everyone worked hard today and we were handily finished by 3pm (even with tons of breaks and my leaving to run an errand!)

I tested out Zoom for our virtual MOPS meeting in the morning, and went to grab our 'spa pack' via a long dirt road detour.

I finally got around to making a rum cake, for which I've had the supplies since before Christmas!  It came out above my expectations.

Emily helped me make a dinner tonight, a recipe I saw a "15 second" video for this morning.  Most of us really liked it.  Billy and Alice were the only two who didn't go back for more.

I installed the bear in our window for 'bear sightings.'

But it looked too sad, so I squished his face up. = )

This should be okay until the tree blooms.  = )

It was a warm-ish day filled with some digital social time and long-term completed activities.  This day would not rate low at all. = )

later days

Bonus: A Juliet story!

Juliet (after finding a makeshift key to open the bathroom door while I'm in the shower): "mutti, why do you always lock the door while you shower?"
Me: "Because, it's the universal sign that you shouldn't come in."
J: "Well, I didn't see a sign."

March 24th, 11th day of Quarantine (now mandatory), Day 7 of School at Home

The anticipated high today is 47F, and in this moment it is sunny out.

Today was about as uneventful as you can get while being productive.  Everyone finished their work before 3pm.  The weather cooperated for two outside recesses.

For lunch we had bacon, carrots & oranges. And some made their own corndogs in the microwave! <3

The kids were quiet for Billy's business calls.  The big girls posted videos to their online classrooms, and William sent a picture of his Lego battlefield to his teacher before I blew it up with a grenade! ; )

I managed to knock out my follow up task of adding the missing disks from my tub to my digital library.

Grace watched the first doodle with Mo Willems video.  I thought it was cool, and it was highly recommended.  She didn't even finish it though.

For dinner we had Aldi teriyaki noodles that were quite good once I tossed in some chicken.  The kids ate them with some chop sticks left over from our Chinese New Year party.

all in all a good day.

later days

March 23rd, Day 10 of Flattening the Curve, School at home day 6

The expected high today 44F, but there was snow on the ground when we awoke. = (  I had planned a trip to sam's and place and order with Kroger to supplement missing items, so I was extra disappointed about the added obstacle of slippery roads.

I was out the door before 8 though, so I had time to run the recycling to Sarah's (and drop mail in the post box.)  Thankfully the snow was only on the grass and was already starting to melt.

I paid the big girls $5 each to help Grace (Alice) and Juliet (Emily) finish their school work, and an extra dollar to help William if he needed it.

I was the 5th person in line, at 8:30.  Once they opened at 9, they only allowed 30 shoppers in at a time.  Items were limited to one* per person, which is tough for me, since there are so many of us to feed, but I managed what I could.  They had almost everything on my list, except for chocolate syrup, tortillas, our favorite chicken bites and milk.  (It probably helped that I had shopped online first to see what they already had marked as "out."  They were really low on potatoes, frozen meat, deli meat, rice, peanut butter and soap.

As I was leaving the lady asked if I were "stocking up," and I actually responded, out loud: "no, I have five kids, this is a typical week."

Way back when, when the twins and I would shop, they would have to hold things in their laps because I didn't have a spot for everything in the cart.  Then, once they started the 'shop online' option, I was all about it and my life became so much easier!  It is tiring to do it old school! ; ) Thankfully I was still able to log in and use the 'scan and go' feature of their app, so I did not have to stand in line to check out (or touch any of the registers/card machines.)

The snow was quickly melting as I dropped off a few things with Jessica, and headed to pick up my Kroger order.  There were lots of people in the pick up slots again (4-5 this time) and the poor guy was bringing out loads alone.

My final stop was to take a few items to the food bank at the Presbyterian church in Holt, then it was home to unpack all the groceries.  I wore gloves for the majority of my expenditure, and it just feels so weird.

The kids were mostly finished with their school work (except for William) and they had done an excellent job of keeping the counters cleared for groceries.

Billy called for take out at Charlie's, and went to get it while I finished tucking away all the groceries. I was happy to not have to stress about feeding everyone while all surfaces were covered in groceries.

After lunch it was time for outside recess (again) and the kids were building snow structures.

And now, (just after 3pm) the snow is mostly melted, except where the kids compacted it.

William took a short nap, and Emily and Alice made chocolate milkshakes for everyone. = )

I pulled out our DVD/CD tub to catalog.  I cleaned out a (very) few titles that I no longer feel the need to keep.  Going through the videos is a little like going through a time capsule though.  I kept listing of titles to get rid of that are "Billy's movies" until he caught on and took exception to it. = )

For dinner we had corndogs, carrots and leftovers (for me.)  William did finally finish his list around 6.  Hopefully tomorrow he will get back into the grove we found at the end of last week!

later days

P.S.  I was able to buy 5 of the Easter Egg sets to gift the kids from Enisi and Edudi, which made me happy. = )