Thank you.

Hi!  Well, so much has happened since my last post.  I really don't know where to start.  

I am in prep mode for surgery.  I can't believe that we are less than six weeks out from surgery now.  I am sure it will fly by.  Over the weekend I had some minor panic attacks over the preparations that still need to happen.  The biggest thing is that Harlie needs a CT scan so her surgeon can fabricate the devices for her surgery.  It seems silly to go to Boston for a CT scan.  So, we are going to get the scan here and mail it to her.  But, considering we are six weeks out, we have little to no room for error.  Which makes me super nervous.  

Years ago, Harlie was getting ready for heart surgery.  Sadly, I can't remember which one.  I suppose that happens when you've had five.  Anyway, she had to have a heart cath prior to.  We chose to have it done here in Richmond and have it mailed to DC.  For whatever reason (I'm not judging here - just stating the facts) DC wasn't happy with the image quality from the heart cath.  So, Harlie had to have another heart cath - in DC - and that pushed back her heart surgery date.  There's an emotional issue with changing a surgery date.  I don't know why exactly.  But, it's true (at least for me, anyway).  And of course, there's anesthesia and an annoying recovery involved with a heart cath.  So, having to repeat it was a total bummer.  I really don't want to repeat that learning experience.  

So, we need to get the CT scan done asap.  What if it gets up to Boston and the image quality isn't up to par?  I'm no radiologist.  So, how would I know?  Well, I spoke with the surgeon's office on Monday and they agreed - this CT scan needs to happen ASAP.  I found out by the end of Monday that it is scheduled for tomorrow (Wednesday) at 10:30am.  Awesome.  

Until I realized that is at the same time as Cooper's preschool end of year program.  No biggie.  Except that he has a speaking part.  One line.  But STILL!!!  I wanted to be there to watch Cooper speak!!  I am so sad.  Now I just have to hope that Tom can make it there.  

In other news...

On Saturday, May 18th, we had our second We Heart Harlie event.  It was incredible.  I have so much to say about this day, that it definitely requires its own special post (of course!!).  So, I can only say that I am truly overwhelmed by the love and support that our family has received.  From everyone.  

Lynda Reider.  Wow.  She's AMAZING!  Seriously.  I don't know how I got so lucky when she entered our lives.  I just can't say enough good things about that woman.  She has put so much energy and passion into supporting us. It's unreal.  I'm sure her husband has cursed our names at least once or twice. I don't know how I'll ever be able to thank her for what she's done for our family and for our little girl.  I really do believe that she has changed the course of Harlie's life.  I'll talk more about this later in this post.  You'll agree with me, I'm sure.  

Daisy Troop 5091 Moms and Daisies.  I don't think that these women and girls had any idea what they were getting into when they joined the same Girl Scout troop as Harlie and I.  To all of you, I'm sorry.  ;-)  But you girls have jumped in and loved and supported us.  You are appreciated more than you'll ever know.  

Our Family and Friends (who know us, including those who I've never met, but I consider dear friends - you know who you are!).  I know we come with baggage.  You don't have to support us through ONE hard time.  You have to support us through YEARS of hard times.  Through MANY surgeries.  And I know that's difficult.  Honestly, I don't know how you all do it.  I'm exhausted living my life.  I can't imagine how exhausting it is to have to support me living this life.  I get it.  And I'm sorry.  I wish there wasn't a need. I wish I could be more supportive of each and every one of you.  I wish I could be more of a giver than a receiver.  But I hope you know that when I have a bad day, I think of all of you and you give me strength.  Thank you.  

Supporters I've never met.  And those supporters who came out and walked in the rain on Saturday.  This may sound egotistical, but I don't mean it that way... I hear that I'm amazing fairly often.  For the record, I don't believe it.  I am just an ordinary person (albeit, a naturally positive person) trying to have a happy, good life, and provide a happy, good life for my kids.  I don't have a higher-than-average intelligence.  Or a talent.  I have the same goals as many.  But you - I think YOU are amazing!!!  You are supporting us - my family, our daughter - without knowing us!  You are generous with your money and your time and your energy.  That is amazing!!!  I wish I could thank each and every one of you individually.  Many of you came out in the RAIN to run, or walk.  Many of you made the We Heart Harlie event your priority for the morning.  I am just blown away by you.  I wish I could shake your hand, give you a big hug and tell you what you're doing for my family.  

What are all of you doing for me and my family?  For Harlie?

For me and my family:

I'll be honest.  Some days are REALLY hard.  I don't like to talk about those days.  I'd much rather be positive. But some days it's hard to be positive.  And most of the time, I don't write when I feel like that.  And when I struggle like that I think of all of you.  Lynda, Daisy moms, Daisy girls, family, friends, strangers... and you all get me through.  You don't know it.  But you do.  Somehow, I am not on meds and I'm not an alcoholic.  I think I have you to thank for that.

For Harlie:

She is six years old and she doesn't seem to have an ounce of a self esteem issue.  Isn't that amazing?!  When she was born, I pictured a completely different future for her.  And it wasn't the kind of future you'd ever want for your child.  I never, in a million years, dreamed of her being surrounded by a group of girls singing "That's what makes you beautiful."  Or of kids selling lemonade to collect money for her.  Or of kids giving her their piggy banks.  

She's confident.  She's headstrong.  And she knows she's loved.  How can a mother thank you for that?  HOW?!?!?!?

I'll post again about the event, with pictures.  It really was amazing.  When I think about it, I shake my head.  I keep thinking, "How?  How did we get so lucky?"  So many wonderful people there.  So much love.  Thank you.  Thank you.  Thank you.  

Much love,

Christy xo

We Heart Harlie

The We Heart Harlie event is right around the corner.  The big day is May 18th.  Lynda Reider has been working so hard!  Just look at this flyer!

Wow, right?  Thank you to Courtney Lynch (and her company and employees) for this beautiful flyer!  I think she did a great job!  And thank you to Paige Stevens Photography for the beautiful pictures of Harlie!  I will post the rest soon.  They are just beautiful!!

This year the raffle and 5k have been combined into one day.  And Lynda has been working her magic getting lots of fun stuff organized.  She even got a firetruck lined up to be there.  There are going to be lots of good raffle prizes - I'll post a list soon.

We got new t-shirts designed and ordered, and they should be in any day now.  I'm so excited!  You can order them when you register for the 5k, or you can buy them the day of the event.

Here is the link to register.  http://www.racerpal.com/races/WeHeartHarlie.html

Harlie's school is so incredibly supportive of her.  It really is amazing.  The PTA passed out papers for the students to cut out hearts and decorate them.  Then they post them on the wall in the school - Hearts for Harlie.

They are going to do this through the month of May.  Isn't that the sweetest thing?  I want to share a Facebook comment from a friend of mine, Beckie:

What a thoughtful project.  So good for Harlie, but such a learning experience for the other children.  Kudos to teachers who see beyond the "book learning" and take advantage of such a powerful example that can't be taught any other way!"

I am truly thankful for how amazing Harlie's school (both administrative staff and students) has been to her and to our family. I never dreamed it would be like this.  And Harlie knows that wall is in support of her.

Today, she studied it.  And she picked one of the hearts off the wall.  It was a drawing of a little girl standing next to another little girl.  And the smaller girl is clearly a drawing of Harlie.  It has her bow and her trach.  It was drawn by a fellow Daisy.  I don't think Harlie realizes that.  But, she knows the picture is of her and another little girl.  And Terri told me that she held on to it all day.  And as soon as she walked into the house this afternoon, she showed it to me.  The whole thing is overwhelming.  I really had NO idea how loved she would be by other kids.  I feared the world was a lot more cruel.  I have never been more glad to be wrong.

Lynda runs the We Heart Harlie Facebook page.  And she's been working on the route for the 5k.  Since we will be running on a main road, she's had to get the help of some Henrico County police officers to help with traffic control.  I really don't know how she finds the time to do all that she does.  (And she leads a Daisy troop, too!)

She also wrote this story and submitted it to Richmond Family Magazine.  Isn't she something?  Truly!  I don't know how in the world I'm ever going to be able to thank her enough.  I think her husband is really looking forward to May 19th - when she doesn't have to spend so much time and energy on the Holton family!  Lynda and Rich - thank you!!

Much love,
Christy xo

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

We Heart Harlie event and video

So, the We heart Harlie event details...

Where to begin?

First - I want to say how awesome Lynda Reider is for offering to put on a fundraiser for us and get it organized in less than ONE month!  She did a fabulous job and I think she might have found her calling.  I can't imagine how much time she put into this thing!  I also want to thank the Daisy troop 5091 moms and daisies.  They welcomed us with open arms and jumped right in to help Lynda pull this whole thing off.  I have heard so much wonderful feedback from people who were at the event and they said they had such a great time.  All thanks to those wonderful moms!

My niece Jordan and her friends, Kayla, Tyler, and Rocky were busy at work moving tables, putting things where they needed to go and offering to do more.  Thanks guys!!  Maggie, another niece turned 20 that day and came back into town early that morning just to help with this event.  Thanks Maggie!

The event started at 8:30am.  Set-up started at 7:30.  I wanted to be there a little early.  But, of course we were a little late.  I promise I try!!!  But luckily everyone else was on time and set-up was already well underway.  As soon as I walked into the room and saw how many people were working to help, I wanted to cry.  Seriously?  How can we be so lucky as to have so many people who care about us?

I don't have pictures yet, but Sew Susan donated her time and expertise to make t-shirts for the daisy moms and a few others for the event.  That was a last minute add-on and somehow Lynda pulled it off!  Seriously, the girl gets things done!  We went with red shirts and white lettering that said "We heart Harlie."  And Susan thought that Harlie should have her own shirt.  So, she wore a white shirt, with red lettering that said "they heart ME".  How clever is that?  That was Susan's idea - and it was SO cute!!!  So, walking in to see a room full of red shirts that say We heart Harlie made me a little emotional.

We've had so many people since the event say they want a shirt of their own that we are going to make them available for order.  Again, thanks Sew Susan!!!  I'll have all the details soon.

One of the first people that arrived was a familiar face - but I just couldn't place where I knew her from.  So, I asked her how I knew her and she said Saxon shoes.  I was blown away.  First, YES!  That is exactly where I knew her from.  I have bought many a kids' shoes from there and she is usually the one that double-checks that the fit is a good one.  And she has helped me with Harlie's shoes, too.  Second, how incredibly thoughtful is it that she (and two other Saxon employees) came to the event?!  Seriously!  The whole day was like that.  It was crazy!

A Sweet Frog store opened up just a few days before the event and Lynda got them involved, too.  They sent t-shirts, stuffed animals and mascots!  They were huge!  It was great!  Well, except for Harlie who was TERRIFIED and wouldn't let me (or whoever I could pass her off to for a moment's break) put her down.

The raffles were in the cafeteria, scattered about on round tables with flower pots in the center.  And there was Zumba and Tae Kwon Do in the gym.  It was awesome to see that the Zumba class was filled with all ages - older adults to little kids.  And they were all having a great time!  I've heard from numerous people that Sylvia, the Zumba teacher was awesome.  Thank you, Sylvia!!!

After Zumba was over, Master Cho's came in to do a Tae Kwon Do instruction.  The kids looked like they were having a blast in there!  Thank you Master Cho's!

While those activities were happening in the gym, there were relay races and Adrenaline (and free play time on the playground) going on outside.  It was a beautiful day and everyone looked like they were having fun out there, too.

Then it was time for the raffles.  Everyone moved to the gym and stood around or sat on the floor.  Lynda and some other daisy moms were on stage.  I was a nervous wreck because I knew that when it was over I would have to go up on stage in front of all those people and speak.

It was emotionally exhausting!  While I wouldn't necessarily consider myself "shy" I am definitely not a mingler, either.  I was out of my comfort zone for sure.  I went up to people I didn't know and introduced myself.  And I stood up in front of a crowd of many I know and love (I think it's easier to speak in front of strangers) and tried to let them know how incredibly thankful I am.  That was not an easy task! I get emotional just thinking about it.

The only way I can think to describe it is that it is so emotionally complicated to have a fundraiser organized for your family.  I'm so thankful for the love and support of our friends, family, and strangers.  And I feel so incredibly lucky and blessed to have that kind of support.

But then I wish more than anything that it wasn't necessary at all.  I wish Harlie could be a healthy, talking, giggling, nose breathing little girl who could swim and hear and enjoy her life like her brothers and her friends.  But, I try not to think about it that way.  We are LUCKY to have her.  And we are HAPPY to have her.  Every single day.  

So, see what I mean?  I'd give anything to be the giver versus the receiver in the fundraising area.  I was talking to some wonderful moms a few weeks ago about the fundraiser and they were so excited about it's success.  One of the moms was there and said she had a great time.  Anyway, I was explaining that she's our responsibility and we are willing to go into massive debt to get her the care she needs.  And she said, "What does every woman expecting a baby pray for?  A healthy baby. You drew the card that none of us want.  We want to help you."  I love that she could speak honestly like that.  And something about that just made me feel better.

I am still working on my thank you notes from the event.  But in the meantime, please know how much we appreciate your support and giving spirit.  And I mean everyone who donated money, all the businesses that donated items, all the people who helped get the word out and get some of those businesses involved, and everyone who chose to spend their precious time with us, supporting us.  We are so thankful!

Oh, and one of the points I wanted to make in my thank you at the event (repeated *sort of* for those that had to leave early and couldn't hear it) is that it can be very lonely being the mom of a child with complex medical needs.  There are everyday "things" in my life that have had to become my normal that most mothers have never even heard of - nor had to accept, learn, deal with, etc.  So it's easy to feel lonely.  But not on this day.  Nope.  On this day we were surrounded by so many people who care - even though they might not understand, they care.  And I'm going to remember that feeling in August, when we're sitting in the OR waiting room for 10+ hours.  I'm thinking we might start to feel lonely.  So, I'll look at the video below and I'll remember that I'm really surrounded by some awesome people who love us.  So, thank you for that!

Okay, here is the slideshow of the photos that Paige Stevens Photography took (plus some other ones sent in from friends).  Thank you Paige for recording such a heartfelt occasion for us and for being a part of the raffles, too!

We Heart Harlie Video

Love,
Christy xo