Tuesday, October 7, 2014

Stretching out the words to see where they go....

In summer, we spend so many lazy days.  We have all the time in the world, and most days we don’t go anywhere.  I’m not complaining, at all.  It’s just funny juxtaposed with our lives in the fall.  I have no idea how things stack up to make us so busy, but we have our next 3 weekends packed full of activities, and our weeks are pretty busy too.

For example, this past weekend…  We were referred to a group called Horses for Hope, and had an amazing time in the farmlands west of Flint watching the girls ride horses, eat, and do crafts for a few hours.  The volunteers who have been putting it on (for 15 years now) were so patient, so kind, and so welcoming that it was beyond awesome and overwhelming.

Anya was her normal fearless self in those situations, and Amie was so fierce too.  After the experience with the dolphins this summer, we weren’t sure how it would work out with horses.  But she was the first to go out and ride, and showed no fear at all.  She remembered all the horses names, is still talking about it, and kept wanting to go again and again.

Sunday brought us to a free concert at Brighton High School of the Detroit Symphony Orchestra.  The director/conductor of the orchestra, Leonard Slotkin, recently turned 70, and there was a birthday celebration (and song) for him to start the concert.  They handed out kazoos to everyone going in, and Amelie loved loved loved her kazoo.  She played it for most of the concert, albeit quietly due to my urging.

At one point in the concert, a kid (around 6ish) came up to conduct Stars and Stripes Forever from John Phillip Souza.   Mr. Slotkin came and sat in Amelie’s seat (we were really close to the stage), and when he sat down, Amie was covering her ears.  He laughed a good laugh and said to her, “It’s not THAT loud”, and everyone around us giggled.

Watching the kids have so much fun, and enjoy themselves with the music that much, was really a huge boost to my mood.  When we were getting ready to go, I was all grumpy thinking that it was going to be a failure, and that Amie was going to demand to go, much like she did with my movie expedition earlier this summer.  Once we got there, it reminded me of how willing to try things that my kids are, and how I need to remember that at times.  I love it when I get kicked in the pants a bit by my kids.

Today, we’re in Mott for a single overnight chemo drop and hydration session.  This was the round 6 weeks ago that Shelley had to do all in one day, and do hydration outpatient at home…frustrating us to no end.  Apparently the outpatient part of things was a mistake/misunderstanding of new changes to insurance payments, of which they apologized.  So we’re inpatient for one night, and are scheduled to get bounced out in the morning.

Something that was really amazing tonight…  Dr. Yanik, who was our Pediatric Hematologist from Amie’s stem cell transfer 18 months ago stopped in to see her.  For those dutiful readers, you might remember that he was the Doctor whose son organized the Make-A-Wish fundraiser between U-M and MSU, where I got to meet Maddie for the first time. (I feel like I’m name-dropping, but man what great names to drop).  Anyway, he stopped in, and prior to tonight, she has never wanted anything to do with him.  It was a guy thing, and nothing personal. 

But she has changed so much in the last 6 months, in so many ways… he came in, and she was immediately engaged with him.  She talked with him for a few minutes, asked him his favorite color, and even exchanged funny rhyming greetings with him.  But more than anything else, she let him take her picture in these really über cute ways that she is utterly unwilling to let us do these days.  She posed for several minutes in all these different ways with him, and then even took his picture with Baby Jumping.

The reason I go through all this exhaustive detail is to say how much I am impressed with what a great kid she’s becoming.  Through the last year, she’s gone through all of the fussiness of being 3, and is growing into that magical 4-year old stage that I loved so much with Anya.

For another example, over the last few weeks, she’s discovered manners.  Now, we’ve been modeling manners for years now.  Please, this.  Thank you, that.  If you have a moment, could you get me…  But all of a sudden, all the manners clicked into place.  She’s got all these internal skills and behaviors that we’ve been building, and they’re all coming into their own.  But, all that internal stuff is still trapped into this gorgeous but apocalyptic little shell.  Ugh.

Yep.  That’s the problem, eh?

Moving past all of that, we’ve got our next MRI on Tuesday of next week, so you can expect a quick update on whatever that might bring to us.  As you can imagine, this is a big one, as it will tell us what the treatments are bringing to bear with the new diagnosis of Rhabdomyosarcoma.

To end the whole thing on a far more positive note than that last paragraph (as it is my wont to do), I give you the two sides of my family.  

The stately and poised side.

The off-kilter and wacky side.

Yin and Yang.

Pot and Lid.

Work and Rest.

Thanks for the support y'all.  More to come in the days ahead.

oooh, one more thing.  This video:

If you want to see more Amie videos, here is my YouTube channel.