Quick Update

I have so much to share with you.  Here's a snapshot of what's been going on.

We had Harlie's appointment with her pulmonologist on the 13th.  I will go into more detail very soon.

The Deep Run Marathon Dance was the 14th and 15th.  It was awesome.  What an amazing experience!  The whole thing was incredibly impressive.  I really want to tell you all about it (and show you pictures and videos) but all that stuff is on my other computer, so I will have to save that update for later.

I spent last week in bed, sick with some horrible flu-like virus.  It's pretty much gone now.  While I feel SO much better, I can tell that I am not fully back to 100%.  My lungs and exercise endurance is dragging a bit behind.  Which is perfect timing with the Ukrop's 10k coming up on Saturday.   I don't know why I signed up.  No more races after this one and my half at the end of April.  None.  At least for a long while.

Now that I am better, Tom is sick.  It's much worse when he is sick, since he is the one that provides dinner for the family.  I am going to try really hard to make dinner tomorrow night to give him a break.  I know that sentence makes me sound like a complete idiot.  But, as I've had to learn so much in certain areas (almost every major medical specialty) some basic brain function had to be sacrificed.  The cooking was the first to go.  Poor Tom.

Cooper started soccer again and is loving it.  Apparently the last few months of growth and maturity made a difference, because Tom said he could immediately see that Cooper was much more into it than in the fall.  I missed all the action because I was sick.  But, he scored two goals in his very first game!  What a turn around!  I also signed him up for basketball through his preschool.  I love that they offer programs like that.  He stays for two hours one day a week to play there.  Awesome.  He liked his first class earlier this week.  We'll see how it goes.  It is amazing how incredibly different each parenting experience is/has been for each of our kids.  Murphy has NO interest, Harlie is unable and Cooper is ALL in.  It's a good thing I'm so flexible...

I want to share a video I have of Harlie tubing herself her dinner.  But, it's on my other computer.  So, I will have to save that post for later, too.  If you're on Facebook, you might have already seen it.

My Mom had her lumpectomy and all went well, I think.  She has another appointment next week and we'll know more then about the next steps (radiation, etc.).  But she isn't in any pain and she is in good spirits.

My younger brother, Cabell and his fiance are expecting their first baby in August.  They just found out they are having a boy!  We are all excited about that.

Now that the Deep Run Marathon Dance is behind us, we are setting our sights on the We Heart Harlie and Friends event May 3rd.  It will be here before we know it!  Here is the flyer...

Registration for the 5k and Kid's Fun Run is open and new shirts are for sale.

We are going to have Women's shirts in Tahiti Blue, Purple, and Vintage Black, Men's in Vintage Black and Envy (green) and Kid's in Turquoise.  Pictures of the shirts will be up on the website soon.  If you have come in the past, please note the new location.  It is going to be at Deep Run High School this year (instead of Glen Allen Elementary).  We outgrew the space at Glen Allen, which is a great problem to have!

I can't remember what I've told you about We Heart Harlie, but it has grown into a foundation!  It is now We Heart Harlie and Friends and Lynda has been working with an attorney and CPA to get all the paperwork and applications done to make it be an official foundation with a 501(3)(c) status!  It is so exciting!  Here is the new website, which is in its beginning stages as Lynda is adding to it and adjusting it as necessary.

We are so excited to be able to help more families now.  Each year we will select different families to help.  We have a board, and it is almost full.  If you would be interested in being on the board, please contact us and let us know.  And let us know if you, or someone you know, would be interested in donating a product or service for the raffle.  We are so grateful for every donation!

We are hoping to do some more (and different) fundraisers for the foundation throughout the year.  We would like to do an adult only silent auction with food and drinks.  And last night Cheeburger Cheeburger had a fundraiser night where they donated a percentage of the proceeds to We Heart Harlie and Friends. How cool is that?! Tom and I ventured out and took the kids.  It was so much fun!  There were so many Glen Allen Elementary teachers there!  It is so sad that we don't get to see them since Harlie is still on home bound.  But it made seeming them out (and wearing their We Heart Harlie shirts) even better.

I have so much more to share!  But, I have to stop for now.  Harlie has a CT scan scheduled for Friday.  I want to share what I know about that so far.  So, I am hoping to update again tomorrow or Thursday.

Thanks for checking in!
Much love,
Christy xo

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

Quick Update

On Monday, Terri came in and I was still in bed.  She started her assessment of Harlie (who was also still in bed) and then she poked her head in my door.  She said, "Harlie is on four liters of oxygen - and she's only at 85%?"  I said, "Yes."  Four liters of oxygen is a lot.  She looked concerned.  And then she left.  A few minutes later she came back and said that her trach had some bloody secretions.  And that she thought maybe she should go to the doctor.

But, I was in no condition to take her to the doctor.  Or the ER, which is where I knew she'd end up.  Well, right at that time my friend Jennifer called.  And I told her what was going on.  And wouldn't you know that she offered to come over here and drive Terri and Harlie to the doc and ER for me, so I could stay here and rest?  Wow!  So, my Mom came over to hang out with Cooper downstairs.  And Jennifer and Terri took Harlie and I stayed upstairs and slept.  Crazy, huh?  And I crossed my fingers that there would be no reason to admit Harlie to the hospital.

They got back later on that afternoon, with Harlie, luckily.  Terri said that Harlie was a mess until they got to the ER.  She said that once they were there Harlie got herself together and smiled at everyone while playing on the iPad, looking all innocent like nothing was wrong.  I guess she realized where she was going to stay if she wasn't on her best behavior.  She didn't cough up any blood or anything.  She said the doctors were like, "So, what brings you here today?"  I had to laugh.  She has totally done that to me before.

Her x-rays were good (which is so bizarre considering her sats are so low!).  And they tested her for the flu and her test came back positive for Influenza B.  No surprise there.  See? I told you we all had the flu.  But, she's been on Tamiflu since Friday.  So, at this point, there's nothing we can do but treat her symptoms.

Today is Friday and I am definitely feeling better.  And I can't tell you how good it feels to be back in the land of the living again!  I might even try to run a little this weekend. I'm not back to 100%, but I'm getting there!

Harlie is still on four liters of oxygen.  And her sats still go to the mid 70s when she's off the oxygen.  But, she seems happy.  Of course she's pretty much confined to the couch since we've been leaving her on trach collar (humdified air with oxygen) to help keep the oxygen from causing more mucus plugging.

I have to tell you that I am really over her not being well.  She has been sick all but three weeks since Christmas.  And I miss a healthy Harlie.  It's been so long since she's been energetic and playful.  And I'm sure she misses being healthy, too.  With any luck, she will recover from this flu and this will be IT.  I just had to reschedule that darn sleep study.  Again.

On a good note, she is doing great with her BAHA.  I'll have to take a picture for you so you can see it.  But, now the processor just clicks right on her head.  It's so cool.  She's still sensitive and fights putting it on for a while.  I usually have to withhold something she wants (like the TV or iPad) until she lets me put it on.  It only takes a second, but you do have to press a little hard, so maybe it still hurts a little.

Anyway, while wearing it, for the first time EVER she actually asked me to turn the volume down on the TV!  Can you believe that?  And then while using her communication device, she turned the speaker volume down.  I'd say that's a pretty good sign that she's hearing better with it actually being bone anchored now.  Woohoo!  Now if only we could get her back to school so we could see it in action.

On Thursday night, Paige (Paige Stevens Photography) came over and did a quick little photo shoot with Harlie.  This was our third appointment - every other time Harlie was too sick.  We took Harlie off the oxygen for the photos - and just let her hang out in the 70s.  You wouldn't even know it, either.

Harlie was so good!  She was completely cooperative in every way!  I just couldn't believe it.  She is really growing up.  She no longer squnches her face all up when she smiles.  Wow.  What a difference that makes!

Paige is so good, too.  I really can't wait to see these photos.  We did it to get a photo of Harlie for the new flyer for the 2nd Annual We Heart Harlie fundraiser.  Lynda is already busy making big plans.  So, save the date!

We Heart Harlie

May 18th, 8am to 11am

at Glen Allen Elementary School

And this year there will be a 5k, too!  

There will be the raffle like last year.  So, if you have a service or product you would like to donate, just let me know!  We are working on getting some cool printed t-shirts, too.  I know a lot of people wanted to order shirts, but we just couldn't keep up with the demand.  So, this time, we'll have them on hand.  More on all that as things develop...

Tomorrow (Saturday) is Cooper's first soccer game.  I have to admit that I'm a little worried.  The other day Cooper and Murphy were kicking the soccer ball in the backyard and when Murphy kicked the ball, Cooper started crying.  Oh boy.  Does that mean he's going to spend the whole game crying?  Guess I should prepare myself to be pretty embarrassed.

That's it for now.  More later!

Much love,
Christy xo