Finally! An Update!

Wow. Almost a month since my last post!  I think that might be a record.  And not a good one, either.  I need to blog.  It really helps organize things in my head.  And it just makes me feel better overall.  So, when I go this long without blogging, it's just not good.  It also means that I'm too busy.  And that's never good.  Because odds are I'm not busy doing fun things.

I'll start by just trying to get you caught up on some stuff...

On March 23rd the cleaning people came to clean my house thanks to our wonderful friends - the Gasperini family, David and Wendy Miller, Carla Mentry, Kathleen Allen, Jill Wheelin, Holly Cowan, John and Allison Schmitt, Chris and Carol Cousins, Brad and Michelle Onofrio, Sally Young, Stephanie Madden and Harlie's incredibly supportive Daisy troop!  Seriously!!  Can you believe how much we are loved?  Because sometimes I can't!  How did we get so lucky to have such wonderful people in our lives?  I think about that more often than you know.  They all helped to get us TWO house cleanings and a Target gift card!

This was the first cleaning and I can't tell you how WONDERFUL it was to come home to a sparkling clean and fresh home!  It took two people, four hours to clean it from top to bottom (even my ceiling fans!).  So, if I had done it, it would have taken me eight hours and trust me when I say I can't ever imagine a day where I could spend eight hours cleaning!  NEVER!  As it is, I do a bathroom here and there, vacuum one day, do bedrooms another day, etc.  So, it never feels clean.  Oh, how wonderful and luxurious it felt!  And to think we'll get to feel that again soon!  Wow!  Since it's been so darn long since I last blogged - they got this for us during my kidney stone/family flu dark days.  I think we are all better off with a good cleaning to get rid of those winter germs!

Cooper also had his very first soccer game that day.  You might remember that I was a little nervous he would cry.  But, he didn't.  And it appeared that he never even wanted to cry.  So, that was awesome.  And as I think about me being worried about him crying, I am ashamed of myself!  Really?  Of all things to worry about - that just seems super silly.  He loved running around.  But, his shorts were way too big and he had to keep pulling them up.  My Mom has since fixed them.  Thanks, Mom!

Cooper's the player closest to the coach (Thanks Geoff Gasperini!)

He's the one on the right.

On Sunday morning (the 24th), I ran for the first time in weeks.  While it felt "good" to get out there and be running again, my lungs actually hurt a little.  We ran a little over three miles.  Eventually I'll get my running groove back.  I'm just going to have work a little extra hard for a while.

That Sunday afternoon, Tom and I were interviewed by a reporter for Style Weekly.  He brought a photographer with him, too.  The reason for the interview was about the push for a full service, stand alone, children's hospital here in Richmond.  Remember that meeting that I spoke at and was pretty embarrassed?  Well, he was there and he came and got my contact info.  So, I guess I didn't sound so silly after all.  More on this later.

On Monday, the 25th, we had a snow day - no school.  Ugh.  I'm really over Richmond's fear of the snow.  I get it to some point, but the roads were perfectly fine.  And surprisingly, I think the kids are over snow days, too.  They didn't ask to go outside at all!  Which was fine by me!

What a mean Mom I am.  I made Murphy walk the dog in it.

On Tuesday, the 26th, we sent Harlie back to school for the first time in a couple of weeks.  She wasn't too happy about it, either, which was kinda weird.  Usually she argues a bit, but then seems happy to get on the bus.  I, of course, second guessed myself all day.  She was still on oxygen 24/7, and logistically that's difficult to manage.  She was going through two large tanks in a school day.  Which means I have to take her more tanks since Terri can't carry extra tanks with her.

I am so tired of seeing Harlie sitting on the couch, watching TV.  But, I also don't want to prolong her recovery by sending her to school.  Ugh.  No decision is easy when it comes to her.  And it weighs on me constantly.  I go back and forth in my feelings throughout the day.

On Wednesday (the 27th), Terri couldn't work.  So, I took Harlie to school.  She had a hearing test at another school that day.  So, at around 10am, we got on a bus and went to the other school.  It was when we were getting off the bus that I noticed the gauge on her oxygen tank.  OMG.  I am not a good school nurse!  I totally forgot to switch the tanks out before we left!  And this tank was almost empty!  There was no way it was going to last her till we got back to her school (where a new tank was).  Ugh!  So, I called a neighbor and asked him if he was working from home.  Thankfully he was!  So, I gave him the code to get in our garage and get a new tank.  Then he brought it to me at the school (which thankfully is close to our house).  What a life saver!!!  Thank you so much, Bill!!

I am SO over the stress of this oxygen requirement.  I can't tell you how much energy it takes out of me.  And the logistics of the tanks is a nightmare.  So, I emailed her pulmonologist (again) and asked for a portable oxygen concentrator.  He promptly wrote an order for one and got it to my supply company.  They said that our insurance denied it because it was a "convenience item."  For real???  Wow.  Crazy me!  Wanting oxygen to be convenient!!!  I honestly didn't realize that you should have to work really hard for oxygen.  Seems to me that something you need in order to LIVE should be somewhat convenient.  Especially considering the circumstances - it's for a six year old girl with heart and lung disease so she can attend school.  I guess that's asking too much.  Luckily, she has Medicaid.  Thank you Virginia tax payers!  We are so grateful for VA Medicaid!

Our supply company worked really hard to get it to us as soon as possible.  We were about to go out of town for our first vacation in FIVE years!  Woo Hoo!!  And they got it to us that Friday!  Awesome!  The only negative is that this concentrator only came with one battery.  And on the high flow she was on, it would only last four hours.  The only difference then, was that if we had access to plug it in, it could run off power instead of battery.  I'll take it.  But, that clearly wouldn't work if we needed to fly to Boston.  It's not ours anyway - we are only renting it (standard, I hear).

Murphy got sick again and missed the last two days of school before Spring Break.  He missed more school this year than ever.  Between all three of the kids - this house has practically had a sick kid in it most of the time since Christmas!  Needless to say, I'm more than ready for Spring.

On Saturday, March 30th, we left for Isle of Palms, South Carolina!  It took me all week to pack and get ready.  But it was worth it!  Here are just a few pics...till later.  I'll post more about the week in a dedicated post.  I hope.

Cooper, Harlie and Murphy.

Harlie, Cooper, Murphy, Vivian and Chelsea

Our friends, Mike and Laura (who live in Pittsburgh) rent this house on Isle of Palms and they graciously invited our family to join them!  Vivian and Chelsea are their girls.  We had such a great time!  I really can't wait to write more about it.

And you might just notice that Harlie's not on oxygen in any of those pictures.  She was on it through Saturday.  But after that, she was much better and only required it at night while sleeping.  We were so thankful.  And I think she was, too.

We left on Friday and Mike and Laura followed us home.  They stayed with us for the night and then continued on to Pittsburgh the next day.  Tom's mom came into town on Friday, too.  We had a great weekend.  She got to go to Cooper's second soccer game on Saturday.  And on Sunday we all went to see the movie The Croods.  It was so funny!  We all loved it.

Oh!  I forgot to write that on the Wednesday we were on vacation, the Style Weekly publication came out with the children's hospital debate as the cover story.  I will post pictures of the actual publication soon.  I have more to write about that subject, too (surprise) so I will have to save that for a dedicated post, as well.  I have no idea how I'm going to find the time.  But, I will.

Today is Monday, April 15th and Harlie missed another three days of school last week.  And went back on oxygen full-time.  Luckily over the weekend she perked up again.  So, I got to send her to school today - without oxygen.  That's always a good feeling.

I still have more to write about... but the kids are all home from school now and I have many unfinished projects that need my attention (laundry, the kitchen, the bills, etc.) AND I am cooking dinner tonight.  Yes, you read that right.  I am making dinner tonight.  Murphy and Harlie both have scouts tonight (this will be Harlie's first Daisy meeting in .... months?).  So, tonight will be pushed for time.  So I decided to help by making the easiest thing I could think of - tacos.  And I almost came home without the ground beef.  And that's why I don't cook dinner often.  Or ever, really.

Throughout the last six years, a certain episode of Married, with Children has come to my mind (basically, whenever I do something dumb).  Do you remember that show?  In it, Kelly (the dumb blonde) has to pass 11th grade.  So Bud (her little brother) tutors her.  After working with Kelly for a while, they show Al Bundy (the dad) what Kelly has learned.  He was impressed, and Bud sits next to him and says,

"One slight problem... if you take a gallon of knowledge and pour it into a shot glass size of a brain, you're going to spill some.  In other words, certain basic information had to be sacrificed."

Then the doorbell rings. And Kelly says, "What's that?"  Bud answers, "The doorbell." And Kelly points to Al Bundy and says, "Who's the old guy?" and Bud answers, "That's Dad."

I fully recognize that it's CRAZY that I remember that episode.  Clearly, it spoke to me then and I guess I thought, I'm going to need this later.  I think of it because I often feel like Kelly.  I've had to learn so much medical stuff that I had to get rid of basic information to make room in my brain.

It's silly, I know.  But it makes me chuckle, and sometimes that's what I need to get me through the moment when I feel stupid or inadequate.  Here's the clip.  The part I'm talking about is at the 5 minute mark, if you want to jump to that part.  You know, because you don't have anything better to do.

And as I was finishing this post, the news about the explosions at the finish line of the Boston Marathon broke.  Ugh.  Just awful.  As a runner, this hits a little too close to home.  So sad for everyone.  Thank goodness Boston is such an amazing place.  They were more than ready to handle whatever came their way medically.

Needless to say, dinner was not ready and on the table when Tom got home.  And I almost burned the ground beef.  Twice.

Sorry for such a long delay in posts.  Thank you to those of you still continue to check for new updates.  Love you all!

xoxo,
Christy