Monday, September 16, 2013

Harlie's first day of school...

My posts are going to be out of order.  But, it's the only way I can post right now.

Over the weekend, Harlie's Vest arrived.  A nurse called me to make sure everything was in order and to schedule our training time.  On Sunday, she came over to train us.  It took over an hour.

We have to do it for twenty minutes, two times a day.  Harlie isn't a fan.  The vest inflates and then air pulses through the tubes into the vest.  It's purpose is to help move mucus from her lungs.  Hers is ordered for use all the time - not just when she's sick.  I guess if she doesn't get sick much this winter, then that means it's working.

Last night was our first time doing it on our own.  We put it on Murphy and Cooper first, just so Harlie would think it was "fun."  But, she's smarter than that.  She knows it's not fun.  I was a little nervous about this morning's routine, with the Vest added into it, since it was going to be Harlie's first day of school!  The problem is that the Vest can't be done near a tube feeding time - which was 6am. So, I had Tom give her the first half of the can at 5:30 when he left for the gym.  Then I got up at 6am to give her the rest of the can and her meds.  Then I let her rest a little while longer before I got her up and dressed.  We started the Vest treatment a little ahead of schedule, before 7am.  She gets her breathing treatment at the same time.
Not a fan of the 20-minute treatment.
Bribed her with the iPad.

This bad boy is NOT cheap. (like $16,000!)
It's also not light.  And we will have to take it with us
when we travel to Boston, or anywhere else.  

Of course my healthy kid asks if he can have a turn next.
And then she kicked him. Sibling love...

Despite her initial reaction when told it was a school day,
I think she was probably a little happy to be going.

We travel light.
She's going to have to use her chair for a while.  Her classroom is SO far from the parking lot!  There is no way she can walk that far in a reasonable amount of time.  Especially with her oxygen requirement.  And her questionable spinal pain.  I'm rationalizing that it will mean for more energy for her work.  But, secretly, deep down inside, it kills me that she needs it.  I never thought we'd be here when she was this age (almost 7!).

Since I didn't get to go to open house at her school, I wanted to go in the class and meet her teacher.  As we got to her classroom, the class across the hall saw her and they all said excitedly, "Harlie's here!"  I had to really choke back the tears.  Just thinking about it now makes me cry.  They all seemed genuinely happy to see her.  Her teacher said that every day they would ask her about Harlie.  I love how kids are so concerned about her and how she's doing.

In class and somewhat cooperative.
Terri said she did all her work.  She just did it at her own pace.  Which is slooooow.

Last week her teacher sent home this banner the kids made.  The kids signed their names on a heart and glued it to the banner (and her teachers, too).  It is very big and takes up most of my main wall in my office.  I love it!

And I've been meaning to show you this puzzle a group of girls made for Harlie.  It is one of those really big floor puzzles.  A friend of mine has a summer camp for girls and they did this puzzle and made some other cute stuff for Harlie.  I love all the sayings on it - Never give up, Be yourself, Just keep swimming, She leaves a little sparkle everywhere she goes, Don't worry be happy, Be unique, Spread love, etc.  So cute!

In preparation of Harlie going to school today, I made a few checklists to make sure we had everything we needed.  I got a little chuckle out of her backpack checklist.  Notice the last item... oh, yeah, that school book.

We're going to need a bigger backpack.
Seriously, when I picked her up today (half days until she builds up a little endurance) I had to carry her school stuff in my hands.  We really do need a bigger backpack.  The one she has is a kid backpack (large, but designed for a kid to wear).  But, considering we are the ones carrying it, we need to get an adult backpack this time.

I have more to write and more pictures to share, but will have to do it tomorrow.  Thank you for all the love!

~Christy xo


Betsy said...

So glad to hear that she is back at school!

Donna said...

LOVE the banner! And I love the look on her face in the first picture, looks like "what woman, its iPad time!!"

Susan said...

Look at that cutie! I'm so glad she got to go to school. I LOVE that the kids like her so much. I know how much that must mean to you. Though it is hard right now all the emotions that the return to school brings with it. Hugs my friend.