Monday, November 20, 2017

Life Lately

Over the past two months, all the fifth graders in the girls' school read the book Wonder and now they're all going to see the movie.  Emily and Allie (I believe) had already read the book but they read it again with their class.  On their own, they've also read two of the spin-off books - The Julian Chapter and Shingaling.  Five of the classrooms, including all three of my girls, went to see Wonder on Friday and I tagged along as Anna's nurse.  I have to tell you that I cried the entire movie and when I texted Rich this, he wrote back "Seriously?"  Ha ha.  I'm totally not a cry-through-a-movie person.  Maybe I was just being a hormonal mess, but I cried.  Anna kept giving me the side eye too.

I do wish that I had read the book before seeing the movie, but I can't do anything about that now.  I have to say that I really liked how the book/movie told the viewpoint of Auggie's sister.  As a parent, you see this happen and it's tough. You have to try to balance all of it and make it "fair" for everyone.

The fifth grade has also read A Long Walk to Water this year and it's left a huge impression on the kids.  My girls have talked about it so much, I feel like I've read it because, at this point, I know everything that's happened.  So far, it's been a great year on the reading front.  I'm glad they've enjoyed the books they've been required to read.

We're starting to get into the holiday spirit around here.  Over the weekend, we drove by two lots where local Boy Scouts were already setting up to sell Christmas trees.  I know some schools have a holiday break this week.  Ours is fairly short - half a day of school on Wednesday and no school on Friday.  Yesterday, we attended a holiday group outing with the other dance company members.  We saw Cirque Dreams Holidaze at the PPAC and ate at Providence Coal Fired Pizza.  The show was entertaining and the pizza was delicious.  Rich and I added prosciutto to a cheese pizza and it was perfection.  (Good call, hon.)  It was pouring rain when we left to drive to Providence so I couldn't grab any photos of the girls.  Their dresses were so cute - all from Target.

I'm finding myself in an odd space this time of the year.  In the past, I was coming off of a busy season, looking forward to the holidays.  Perhaps it's because we've been in our school/dance routine for almost three months but I find myself thinking of what I want to do.  I did the same thing last year too.  I know some people love to clean and cook.  I don't.  And then I sometimes find myself defending what I do "all day" which sometimes doesn't amount to much because sometimes "all day" is really only a few hours.  That's another post for another day though.  (Hey, maybe tomorrow.)

From a photography standpoint, this time of year is tough.  The sun sets at 4:20, it's chilly outside and the girls are in school "all day."  I've been in portrait-mode lately.      














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Friday, November 17, 2017

Shopping for a dancer? Here's a gift guide!

Dance is discussed and performed daily in our home, so it's no surprise to find many dance related gifts on the girls' wish lists this year.  Gift shopping for a dancer this holiday season?  Here are some ideas straight from dancers and a dance mom.

1. Everything Misty Copeland!  We are a house of Misty fans.  Her story is inspiring and she's a positive person and role model.

2.  Equipment that doesn't take up much space . . .

3.  If you're buying for a girl (or boy) who loves to dance but for whatever reason doesn't/can't attend a dance class, consider a pair of real ballet shoes.

4.  Books, books and books!

5.  Gift cards - Local dance stores, online stores, Amazon.  Dance wear and gear can be expensive and costs add up quickly.

6.  Prepay for dance classes.  I picked up this idea from other dance moms and I have to say, I love it.

Disclosure:  This post contains affiliate links.  TGUH is a participant in the Amazon Services Associates Program LLC, an affiliate advertising program designed to provide a means for sites to earn fees by linking to and affiliated sites.

Monday, November 13, 2017

The Holiday Weekend

This past weekend was the perfect example as to why we purchased a seasonal second home.  We knew that once school started back up, completely free weekends would be rare. While the Cape is beautiful and can be enjoyed year round, the additional cost in purchasing and maintaining a non-seasonal residence didn't seem worthwhile to us right now.


The girls did not have school on Friday because of the Veterans Day holiday, but Rich had to work.  I had delayed calling the pediatrician to set up flu shots, partly because it had been so warm here and hadn't felt like the beginning of flu season, and partly because I was having difficulty in figuring out a convenient time.  (And maybe partly because I'm not a fan of vaccinations.  I weigh the pros and cons with each one over and over.)  It looked like my best bet was either first thing in the morning and bring them to school late, or release them from school early one day.  Emily freaked out over this because it would mess up her perfect attendance, which really is her own thing.  There aren't any awards, etc. for it.  Then they complained because someone has dance every day, so there was grumbling over having a sore arm for dance.

The best I could do was Friday morning.  This way, there was no impact on school.  There was complaining over the fact that they had to dance Saturday morning in the local Veterans Day parade and their arms would be sore.  Right after they had their shots, which thankfully no one flipped out over this year, they were told to move their arms around.  Their arms would hurt less if they kept using/moving them.  Anna had a play date that afternoon and she complained the least about her arm.  (I'm seriously considering play dates for all next year.)  Allie had dance later in the day, and while she experienced some discomfort, she was able to get through class.  Emily, on the other hand, refused to move her arm all day and could barely get dressed Saturday morning.

Our local Veterans Day Parade is a small but meaningful affair.  Originally, all of the dance teams were set to march in the parade, like they do for the Memorial Day Parade, but it was changed to dancing a few weeks ago.  So I have Emily with a sore arm, who can barely get dressed, and she's making herself nervous over having to dance.  Boston went from record warmth to record cold here and the real feel temperature Saturday morning was 22 degrees.  I think that 90% of the parade spectators had someone in the parade.  Really, no one noticed that her arm was barely mobile.


I, of course, had grand plans for photographs galore but it was just too freaking cold. Because the parade route was fairly empty and we weren't sure exactly where they were going to dance, Grammy and I decided to walk alongside the girls.  I ended up helping to hold the banner when they were dancing and was able to see them dance both times.  The dance teams are lined up with the senior dance company in front, which means that my kids were in the back (out of 5) rows.  After they danced, as were we walking past a group of older folks, I heard an elderly gentleman say, "Oh look, they've got those little ones there in the back."

Saturday afternoon, Anna went home with Grammy for a sleepover, Allie had two friends over and I brought Emily, aka Crystal Gayle, to my stylist for a hair cut.  Her hair was well beyond her waist and after the removal of several inches, now sits at about her waist.




What happens when your sister's friend asks what you're doing.

I had dinner with friends Saturday night and then Sunday was all about errands.  Today, we're back to business as usual.  School, homework, dinner, dance.


This next photo pretty much sums up this past week in New England.

Pansies covered in frost.  We went from late summer to winter in a matter of days.

Sunday, November 12, 2017

Life with a shunt

I sometimes feel that in discussing spina bifida, especially as in how it affects Anna, hydrocephalus and the resulting shunt are almost forgotten.  An invisible side effect, if you will.  If you're interested in why Anna has a shunt, I've written about that in some detail here.  Recently, as I mention us worrying over signs of a shunt malfunction, I've been asked what those signs are and why we fear a malfunction.  So let's talk shunts.

Keeping in mind that signs of a shunt malfunction can differ between individuals, here's a partial list of symptoms of a malfunction in children:

  • Headache
  • Vomiting
  • Irritability
  • Lethargy
  • Confusion
  • Decreased performance at school
  • Personality change
  • Swelling along the shunt tract
  • Fever

This isn't a checklist; not every symptom needs to be present in order to suspect a shunt malfunction.  As you can see, several of these signs mimic common childhood illnesses.  If you have children, no doubt one of them as been sick with vomiting, lethargy, fever.  My favorite is personality change.  Um, have you met any ten year old girls? 

Over the past few months, Anna has had two incidents of a sudden headache with nausea.  Both times, the headache cleared within a few hours and she was back to normal.  Because this is Anna, a shunt malfunction is the first thought that comes to mind.  

A shunt malfunction is serious.  A sudden malfunction can result in a coma or even death.

Rich and I have heard "you'll know it's a malfunction when it happens" from others who have gone through a malfunction.  There have probably been three times when I really thought we were at the beginning of a malfunction.  Isn't hindsight 20/20?

Shunt surgery would result in an absence from school and activities.  Yes, her health and brain are far beyond important but try to explain that to a ten year old.  You have to see it from her viewpoint.  

An infection in the shunt and/or tract is also a fear, one of which scares the bleep out of me.  Think about it.  There's a tube that runs from her brain down to her abdominal cavity.  Infections can easily travel up that tube.  

So here's a story for you.  We know another family with a little boy, Anna's age, with spina bifida.  He was having problems with his shunt and underwent surgery, here in Boston, for a revision.  He was in the hospital for months.  This was many years ago and I cannot recall if it was three or four or five months but it was a ridiculous amount of time to spend in the hospital.  Basically, they couldn't get the shunt to work properly and he suffered from infections.  It was a nightmare for the family and goes to show that you really don't know what can happen.  At the end of the day, you say a quick prayer of thanks that you made it through the day.  

Anna has had the same shunt for more than ten years now.  Her neurosurgeon has told us that maybe we never have to revise it - why mess with something that's working? - or maybe he revises it before it has a chance to fail, considering that shunt was placed when she was a newborn.  I say it all the time but that shunt feels like living with a time bomb.  Last December, Anna had an updated baseline MRI on her brain/shunt.  If her neurologist suspects the shunt isn't working properly, a new MRI will be compared to the baseline MRI.  

(I'm obviously not a medical professional and I write of our experiences.  Spina bifida, hydrocephalus and shunts can vary person to person.)  

Friday, November 10, 2017

Drama - The Fifth Grade Play

This year marks the first time the girls have an opportunity to participate in a production through the school system.  The Fifth Grade Play.  The girls have known about the play for years because, in addition to evening and weekend shows, the play is performed on a school day - partly for rehearsal, partly to allow understudies the chance to be on stage.  Of course, the girls decided long ago that they wanted to be in the play when the time came.

(I have to throw in here how I like that there's a focus on the arts in school.  If I had an art class in elementary school, I certainly don't remember it.  My first real art class wasn't until seventh grade.  Music as well.  I participated in chorale for a few years in high school but there really was only a small group of kids who were into drama.  That interest was not spread across different groups of students.)

Last year, I came to know more parents in town through dance.  Several have older kids and as I learned more about the play, especially last spring, I became doubtful that the girls would be able to be a part of it due to dance.  The woman who runs the play is extremely strict when it comes to commitment.  And I get it.  Personally, I feel like there's too much of "the rules don't apply to me" nowadays and she's learned what she needs to do to avoid that.

In order to audition for the play, an adult needs to attend a meeting on your behalf.  At that meeting,  commitment is discussed and the adult receives a contract.  The student must present a signed contract in order to audition.  Play practice is two days a week right after school - 2:30 to 4:30 - from the end of November to the end of March.  During the two weeks leading up to the play, you may be in rehearsal every day after school, and it could go beyond 4:30.  Students are only allowed two unexcused absences.  A commitment to another activity or sport is not an excused absence.  A family vacation is not an excused absence.  Really an absence would only be excused with a doctor's note, which is the same with school.  If you have more than two unexcused absences, you may be cut from certain parts of the play.  More than three, and you may be cut from performances.

I have no problem with commitment.  The issue is that the girls have already made a similar commitment to dance.  And they love dance.  There's never been any mention of dropping dance in order to be in the play.  Really, they just want to be able to do both.  Unfortunately, they have earlier dance classes on both rehearsal days.  On one day, Emily and Allie have tap almost right after school.  They would have to drop tap in order to do the play and they can't do that for several reasons.  Tap is a moot point anyway.  Ballet is on the second rehearsal day and, at best, they could possibly catch the last half of ballet.  That wouldn't be considered acceptable to the dance studio as ballet is a requirement of the competition team.

Here's some of the commitment the girls made when they joined the competition dance team:

  • They need to enroll in ballet class and either tap or jazz.
  • If they miss more than two competition team classes, the studio can decide that the team member is not allowed to participate in a competition.  
  • They need to have good attendance in their other classes.

I have one kid who pretty much got over not being able to participate in the play.  Another kid was unhappy and a bit angry but eventually recovered.  Kid #3 is still upset and heartbroken.  I think it's mostly because two of her close friends, who are also in her class, will be in the play and she's super bummed that she can't do it with them.

The good news is that there will be other opportunities in middle school.  A fact I remind them of every time the play is mentioned.