Thursday, October 9, 2014

Several updates.

Dental Surgery Update:

Can you believe that the very next day after our appointment with the VCU dental clinic, the scheduler called me to tell me that they moved Harlie's surgery date up to .... OCTOBER 23rd!  Isn't that fantastic?!  I am so relieved!  She will have a pre-anesthesia appointment a week prior and then a pre-op check from her pediatrician the day before.  I am so, so happy to know that she doesn't have to wait so long to get some relief.

And I just want to say thank you to everyone who cared so much about this on Facebook.  I was just venting and couldn't believe the response I received!  I can't tell you how grateful I am that Harlie is so well loved and supported!  So, thank you!!!


Harlie had her annual well check with her pediatrician last week.  And she had an appointment with the feeding clinic, too.  Unfortunately, she's lost two to three pounds since April.  In April, we switched her diet from Pediasure 1.5 to Pediatric Compleat.  Both have the same volume per can, but Pediatric Compleat doesn't have as many calories (but it's a little easier to digest).  So, in order to give her the same amount of calories, we had to increase the number of feedings per day to five cans.
Well, her schedule was already a little nuts.  So, we tried to sneak the additional can into the middle of the day by breaking it up into two other feedings.  That just didn't work for her.  She would complain about her stomach hurting the whole day.

And when she covers her g-tube with her hand and says, "No! I'm not hungry." I just can't force any more into her.  I can be tough on her with a lot of things, but this is not one of them.  So, she suffered.  She lost weight, and as a result only grew one inch in a year.  You grow out before you grow up. (Although I cannot help but wonder how the heck Murphy is as tall as he is.  He is nothing but skin and bones!)

Now to catch up, she needs 5.6 cans a day.  Clearly, we have to make a change.  If I couldn't get five in, there's no way I can get 5.6 in!  After thinking long and hard, I made the decision to go back to continuous night feeds for a while.  I dusted off the ol' feeding pump and found a box of food bags in the attic.  I thought I wouldn't remember how to work the pump, but it all came back, no problem.

She now gets two cans during the night while she sleeps, and we bolus feed her the other 3.6 cans during the day.  It definitely feels like we are going backwards, but I don't see any other way.  I can't be accessing her g-tube every hour - that's just not sustainable for regular life.  And I don't want her to be uncomfortable during the day.  So, we'll see how it goes.  We have to go back for another weight check in two months.


I might have mentioned that I'm training for the Richmond Marathon in November.  As the miles are getting longer, working them into life is getting more difficult.  I have to document just how difficult it is so I don't forget it the next time I think about doing this again.  It's clear to me that our life isn't conducive to me running this many miles.

Last week, Harlie had three doctor's appointments.  At one time in her life, that would make for a slow week.  But, since we took some time off from all things medical, it was a shock to my system.  Throw in my part-time job (which is very part-time) and Murphy's after school sport (I might have forgotten to mention that we signed him up for year round swimming, more on that soon) and last week I was wiped.  Being at all those appointments messes up any kind of eating/drinking routine, too.  I had to skip a few meals, and glasses of water.

Normally, I run my long runs on Saturdays.  But, last weekend we went camping and we wanted to get on the road as soon as the kids got out of school on Friday.  So, I had to move my long run to Friday morning.  Luckily, it was a recovery week, so I only had to do 12 miles (I have to run 20 this Saturday).  Thursday night I told Tom that I didn't feel prepared for the run.  I had a really hard week, with not enough focus on eating and drinking.  But, it was too late to do anything about it.

Anyway, I had a hard time getting out of the house the next morning.  And after I finally did, all I could think about was all the stuff I had to do before the kids got home so we could be ready to go.  It's so much easier to set up camp in the daylight.

At about the five mile mark, I knew it was going to be a hard run.  I tried to talk myself up, but by seven miles, I reached for my phone and called Tom.  I asked him where he was (hoping he was out on a job close by) but he was in his office.  So, I said, "Okay, let me go.  I'm going to call my Mom and ask her to come and get me and drive me home."  I have never said that during a run before.  Never.  He encouraged me to continue and told me that we would still make it to the camp before dark - even if I walked home.  He said to run when I could, and walk when I had to.  I wanted to cry.  For real.

I forced myself to continue.  But I hated every minute of it.  As I ran/walked home, I kept on looking at every car that passed, hoping and praying that it would be someone I knew so I could ask them to drive me home.

Second. To. Worst. Run. Ever.  This was the worst.

After what felt like FOREVER, I finally arrived home.  And I have questioned my ability to run this marathon ever since.  One thing about running really sucks - all it takes is one bad run to completely destroy your confidence.

I ran ten miles on Wednesday and it went fine.  I need to put that lousy 12-miler behind me and move on.  And hope for MUCH better with the 20 on Saturday.  Ugh.  Why in the hell am I doing this?  Never again.  I will only do half marathons in the future.  I don't need this extra stress and anxiety.

Harlie's IEP (individualized educational plan):

I don't have enough energy to give this a proper update.  But, after a month of trying to get this IEP to happen, it is finally scheduled for Friday morning.  This is the first IEP I have ever dreaded.  I suppose that's not that bad, considering she's had more than I can count.  But, this is the first time I am asking for more than I think they want to give.  For home bound services, the minimum/standard is five hours per week.  But, that is for a typical kid, with no IEP, who can hear and talk and read and all that jazz.  Five hours per week is hardly appropriate for Harlie.  So, I want her to have more.  Since this is not something the school has ever really dealt with, there are a lot of questions for central office.  So, I asked the person with authority to make decisions on this to be in attendance.  I haven't met her.  So, I'm feeling a little nervous about having an "outsider" there, who has never met Harlie.  I'm hoping she's completely reasonable and excited about making a positive difference in Harlie's life.

No matter how many IEPs you have, it's never easy to sit around a table with a bunch of educators and talk about your kid and what needs to happen to help her learn.  I have a feeling that I'm really going to want a drink afterwards.  But, since I'm running those stupid 20 miles on Saturday, I can't have a drink.  Seriously, why am I doing this?!?!?!

I have to wrap this up now.  I have plenty more to tell you and I want to share some pictures from our camping trip.  But, I need to get to bed.  More soon!

Much love,
Christy xo

Wednesday, October 1, 2014

Dental issues are never fun.

A few weeks ago, when I was reading Harlie her bedtime story, she put her hand up to her mouth and signed "hurt."  I am not proud of this, but that particular evening, I was not up to the challenge of figuring out what was hurting her.  I just assumed it was her pins, or a tooth coming in or something.  I gave her a dose of Tylenol and called it a night.  About a week went by without another mention of it.

Then, again, while I was reading her bedtime story, she did it again.  This time her little hand shook a little while it hovered over her lower jaw.  I put down the book and told her to let me see.  I pulled her lip down, which is not an easy task (her skin is very tight around her jaw) and I found the source of her pain.  

She has a tooth that has come in on the bottom right.  It is her "S" tooth for those of you in the dental-know.  Her jaw has no room for all of her teeth.  So, this one popped out the front of her gum line.  It protrudes forward.  And it has rubbed a hole in her lip and it appears that the tooth sits IN the hole.  The hole is an open sore - like a really big ulcer.  Doesn't that sound so painful?  

I want it fixed. Like now.  

Of course, it's not that easy.  

First, I emailed her surgeon in Boston.  She said to find out if the tooth is a baby tooth or permanent tooth.  If it's a baby, we pull it.  If not, we discuss further.  

I then called her dentist and they got her in the very next morning.  Yes, it's a baby tooth ("S" tooth, baby teeth are letters, permanent teeth are numbers), thank God for small favors.  Now to find someone to pull it.  I should say "extract" it because pulling it sounds simple.  And, as you might have figured out, nothing is simple with Harlie.

Later on that night, Harlie sat in the kitchen floor and did this...


I never discussed her tooth issues with her.  Just with her doctors, around her.  Clearly she understands.  And knows this means the Tooth Fairy is coming.  Yes, sweet girl, the Tooth Fairy will not forget you.

Due to her heart and lung issues - she cannot be sedated at any outpatient clinic or setting.  She needs more monitoring, and that has to be done in an operating room, under general anesthesia.  

Numbing the area and pulling it - like some might be able to do - is not an option, either.  There is no way that Harlie would ever cooperate for that.  Please remember that this girl has been through more in her life than most can even imagine.  She is very fearful and the experience would only cause her more trauma.  PLUS, since her mouth is very A-typical, they have no idea what's involved with extracting this tooth.  

So, they will need to put her under, take x-rays, and then figure out what to do from there.  

The only facility here in Richmond that I'm comfortable with her going under anesthesia is VCU.  So, I made an appointment with the VCU dentistry, pediatric department.  They got us in for the very next day, which was today.  

At first, I was pretty annoyed.  I tried to read about the dentist that we were seeing and I couldn't find her anywhere on their website.  So, I called to ask and was told that she is a resident.  While I understand that a resident is a dentist, I knew this was too much for a resident.  And I just didn't want to go down there, have a resident look at her and her history and then tell me I had to bring her back to see someone else.  It was a frustrating conversation with some "IF she needs it pulled" and "IF she needs anesthesia" as if I had no idea what I was talking about.  Ultimately, I gave up and thought we would have to go just to get in the door and take it from there.  I vented to her cardiologist, who told me that once they met her they would understand, so I should relax.  He was right.  

When I checked in for our appointment, she told me that they re-assigned her from the resident to a faculty member.  I promise I don't want to be insulting to a resident, but I really feel like Harlie's earned some sort of gold star, premium membership, fast-pass, kinda thing.  She really shouldn't have to mess around anymore.  She's seen more than her fair share of residents in her lifetime.  

The practice was very nice and compassionate.  I handed over Harlie's five page medical summary and they listened.  Based on her previous jaw work and crazy mouth, they felt that an oral surgeon would be best to do this, along with an oral maxillofacial surgeon's involvement.  

They warned me that there was a wait for surgery dates.  So, I asked what do we do if Harlie's pain becomes worse or unbearable and he said, "Let us know and we'll prescribe something."  Hmm.  

But, since I didn't know a date yet, there was no point in arguing.  They sent me to the scheduler next.  
She sat me down and gave me a date - January 22, 2015.  WHAT?!

She saw my face and she started explaining.  She was awesome.  For real.  So compassionate and understanding.  She said that they only get two days per month in the OR - the first and last Thursdays of each month.  Considering her pain, she put Harlie on the hot list, which is a list of kids that need to be worked in ASAP.  As they get cancellations, she works them in.  I asked her how likely that was and she said highly, thanks to that enterovirus going around.  

Clearly, I am upset.  The thought of waiting almost four months to relieve Harlie of pain KILLS me.  Not to mention that her having an open sore in her mouth makes me very nervous about the infection risk.  We've been there, done that, more times than I care to remember.  And it's always been horrible.  Her infections have never followed the norms, either.  Because I never would have anticipated a four month wait, I didn't go over her infection history with them.  I wonder if that would have made a difference at all?

I totally get that their docket is full.  And I totally get that there are other children with pain related issues that are also waiting on their OR times.  I don't want to bump another child so Harlie can be seen sooner.  I don't.  

What I want, is to have a facility here where children don't have to compete with adults and fight for OR times.  I want a facility that can operate on her when it's appropriate for her, and not just put her in line.  As many times as Harlie has had to go into an operating room (40 surgeries, people!) we have NEVER had to wait almost four months for a surgery date.  Never.  

I put something about this on Facebook today and was astounded at the response I received.  So many caring friends offering to call people they know to see what they can do to help Harlie.  I wish I was the kind of person who was comfortable with this sort of action.  But, we need our local docs for the long haul, and the last thing I want to do is piss them off, or burn a bridge.  I don't want to have to have someone pull some strings.  I just want a facility that runs with the best interest of children in mind.  And having a child with heart defects wait four months for a surgery that involves an open sore in her mouth sounds like it's not in her best interest.  

But, then I remember all the infections.  And I know her history.  And the thought of this going the wrong way terrifies me.  After all she's survived, what if it was a stupid tooth that took her down?  And I was too nice to let people help.  I would never forgive myself.  

While I am mulling that over, I have already gotten a call in to Children's National in DC and I've emailed her surgeon in Boston.  I really don't want to have to go to Boston for this.  But, I am curious as to what kind of wait they have, just for comparison purposes. 

As much as I would like to stay local as much as I can, this is exactly why I leave Richmond.  It has nothing to do with her doctors.  I am very happy with them.  And VCU has a great PICU, with great nurses and doctors.  But, navigating this system, and knowing that kids come second to adults makes me take her elsewhere.  And so many people here think we already have a children's hospital.  Crazy.  
Well, it is late and tomorrow is another busy day.  Harlie has an appointment with the feeding clinic in the afternoon.  I'll let you know how that goes.  

Thank you so much for caring about our sweet girl!
~Christy xo

Monday, September 29, 2014

Lots of Pictures

I have so much to share!  I'll start with pictures..

Labor Day weekend.  Last day at the pool.  Till next year GACC!

First day of school pics...

Murphy - 5th Grade
Cooper - Kindergarten

Cooper and his KG teacher, Mrs. Ciucci.

Murphy, at his 5th grade class.

Just because Harlie wanted in.
Grandma and Pap Pap came to visit us from PA.

A friend of Tom's from Pittsburgh sent Harlie these wonderful dresses!  Thank you so much Joanna!  Harlie loves them!

This one is her favorite, of course.  

On September 13, my niece Jordan, got us into Kings Dominion for the day.  She works for Altria, and they rented out Kings Dominion for their employees.  They gave each employee six free tickets, and some spending money.  How awesome is that?  And Jordan gave us tickets so we could go.  Kings Dominion is not far from our house, yet I haven't been there since I was a kid.  And Tom has never been.  How awful is that?  Anyway, we had a FABULOUS time!  I couldn't believe Murphy.  He rode every roller coaster with Tom - like the super scary ones (Intimidator, Volcano, Dominator, Drop Tower, etc.).  I rode the Dominator, but that was it.  I just can't stand the anxiety I feel going up that initial climb.  I just don't need it in my life.  Of course, once I get past that, I like it.  I thought Harlie was hysterical.

We ended the night on the Ferris Wheel.  I am not a fan. And neither is Tom. But Harlie and the boys wanted to go, so we did.

It really was a fantastic day.  It makes me even more excited about our upcoming trip to... Disney!  We haven't told the kids yet.  And personally, I can't wait to tell them.  We are planning on telling them on Halloween.  And then we'll count down to early December!

Speaking of being excited...

The Foo Fighters came to Richmond on September 17th.  This was a  crowd funded concert, and we got to see them with only 1,498 other people at the National!  It was crazy.  Dave Grohl grew up in Northern Virginia and his mom was at the concert.  So cute.  I was unable to get any photos of the Foo Fighters.  But, I sure took some of us!

Allison and I.
I'll have to stop here.  The boys will be home from school soon.  I will bring you more up to date very soon.  I have more pictures and I have something very exciting to write about!

More soon!
~Christy xo

Belated Anniversary Post

Lots to blog about.  Will start with a quick one while I'm writing the "real" post.  Back on August 31st, Tom and I had our 12th wedding anniversary.  While it's not a terribly long time, I feel like we've lived WAY more than just 12 years... we've been through some stuff, for sure.  So, I wanted to do something special for Tom.

For those of you that know me well, this won't come as a surprise, but I am a horrible gift-giver.  I have a very hard time thinking about details like that.  In order to make room for all things medical and educational regarding Harlie, I had to make some room in my brain, which meant losing some basic things.  So, in many ways, I really think I'm "dumber" than I used to be.  At least in the day to day, regular aspects of life.  But, it's the way it had to be.  And I figure that I've saved a life, so that makes it okay and well worth the sacrifice.

Anyway, this horrible gift giving applies to Tom, too.  So, he usually buys his own gifts.  There have been a few times that I really tried hard to surprise him, but it never works out.  He always ends up finding out about it - or he goes and buys the very thing I bought him in the days before his birthday or Christmas.

The most insulting part is that he is a great gift-giver to me.  He's so thoughtful and always gets me something I love.  So, I thought this year, I would do something special for him.  Something to show him how much he means to me, and to his family.  Something he wouldn't know anything about.  So, I put together a video for him.

I asked my niece, Kelly, to help me with it because I used to use One True Media and it was super easy.  Well, that company was bought or something and it was no longer in service.  So, I had to figure something else out.  She helped and while she was scanning in photos and starting the project for me, I selected some songs to use.  I wrote them down and one day Kelly came over and I showed her the list.

The list was in a notebook that I never use and it was in a box on the floor with all my other "to do" crap.  Tom rarely comes in my office and he never looks at the mounds of paperwork.

But, when I went to look at my list, this is what I saw...

Tom added the last song on the list.  Which meant that he saw my list.  Which meant that he probably figured out what I was doing.  As disappointed as I was, I couldn't help but laugh.  First of all, Get Down on it, by Kool & the Gang?  How random!  It's moments like these that tell me we are going to be just fine.

Anyway, here's the video...

12 Anniversary FINAL from Christy Holton on Vimeo.

More soon!
~Christy xo

Monday, September 1, 2014

The eve of the first day of school.

Tomorrow is the first day of school.  Sleep isn't coming easy tonight.  And neither are the words for this post!  I have typed 17 sentences, and backspaced over each one!  I HATE complaining and I'm afraid this post may come across that way.

But, here's what I want to say... tomorrow is the first day of school.  If you are kissing a child good-bye, taking some cutesy picture of them holding a frame, and sending them off to school, with a lunch that they will eat - by mouth - you should take a moment to consider how lucky you are.  If you are amazed at how big your child has gotten, and how much they've grown, you are lucky.  If, when you completed the health form in their back to school paperwork, you got to answer mostly "no", you are lucky.  I mean it, you are truly blessed.

And we are lucky, too.  We have two eager to learn boys, who I will get to walk to school tomorrow.  Murphy is starting 5th grade and Cooper is starting Kindergarten (do you hear the angels singing?).  And I am not sad.  Not one little bit.  They are growing, thriving, easy loving and learning kids.  What's to be sad about?  I knew when I had them they were going to grow up.  The alternatives to growing up aren't good, after all.

And while I know we are lucky to have Harlie (in every sense of the word), it sucks more than I can say to not be able to send her to school tomorrow.

Yes, one could argue, "it's better for her."  And that's probably true.  And, exercising regularly, eating more vegetables and drinking less alcohol is better for you, too.  But does that make it any easier to do?  No.

The bottom line is that she cannot attend school for health reasons.  And you know what?  That sucks.  Plain and simple.

I might have forgotten to mention that back in June when Harlie had her pacemaker adjusted, I asked her cardiologist about her attending school.  I knew in my heart what he was going to say.  But, I asked anyway.  He asked me how she's doing at home, learning-wise.  And she's doing well.  One could make a very strong argument that she has done better at home academically, than she did in school.  So, it's simply not worth the risk.

Medically, nothing has changed from last year.  While she can handle small breaks from the oxygen, her lungs are no better.  And one bad sickness could mean serious consequences for them, for her and for us.  With limited alveoli producing oxygen in there, you can't risk losing any more.

I have to remind myself that this decision isn't mine to make.  I cannot possibly tell you how difficult that is.  Every single day I want to figure out a way to make it happen.  I want her to have SO MUCH MORE.  Keeping her home feels like I've given up.

Some days it is so hard to be her mom.

I just looked back at the last few years of "first day of school" posts.  It made me sad.  So much hope I had.  So much effort we made to get her tiny little butt to school.  And for what?

And, is this forever?  Will she never go to school? What about school pictures?  The yearbook?  It seems wasteful to buy her a yearbook with a bunch of kids that she never even met.  And do I take her to school on the day of school pictures?  The thought of going into that school with Harlie, and it not being for school brings tears to my eyes just thinking about it.  And what about those little frames where you put each year's school picture in it so you can see how they've grown?  It would be mostly empty for her.  Which means I shouldn't get one for her.  Which means I shouldn't get one for the boys, either.  Which makes going for school pictures seem kinda stupid.


I don't even know what grade she's in.  Technically, she's starting 2nd grade.  But, that's kinda bull, because she didn't get any science or social studies last year.  And she still doesn't know how to read.

We went to the pool today and I saw girls that were in kindergarten with her the first time she started (she repeated KG).  They are now starting 3rd grade.  And they are so big and grown up.  And it's like Harlie is frozen in time.  She's still so tiny.  She still struggles to talk (although she is talking SO much more and we are now able to understand SO much more - which is fantastic and never for a moment do I take that for granted, I promise you!).

Anyway, it just feels so weird.  But, like I said, we are lucky to have her.  That is true, and I hold on to that every day.  She is so funny.  And smart.  Even though academically, you might not be able to see it, or measure it.  Just tonight when Murphy and I walked Rooney, he was telling me a story about Harlie saying something.  And he was laughing.  He enjoys being able to understand her just as much as I do.  And he thinks she's funny, too.  Just because it will put me in a better mood, here are a few things that she says that is really funny the way she says them...

1. She gives her baby doll to Murphy and/or Cooper and says, "you take care of the baby."  The other day I was feeding her and she signed "full" and "sick."  I said, "You're not sick!  Mommy's sick."  I was just joking around.  Time passed and I went upstairs and heard Harlie in Cooper's room telling him he had to take care of the baby.  He said, "I don't want to - ask Mommy to do it." Then Harlie said, "She can't.  She's sick."

2. If she asks for something (like to get on the computer) and we say, "in a minute" and more than a minute goes by, she says, "now?"

3. She keeps on telling us that she wants a "pink creature power suit" (from the show Wild Kratts).  The first time she said it I had NO idea what she was saying.  So, I called Cooper in and asked him to translate.  He looked at her and said, "What Harlie?"  She "said" it for the 400th time (1st for him) and Cooper looked at me and said, "She says she wants a creature power suit." and he turned around and ran out of the room.

4. I crack up every time she calls "Boys!" to Murphy and Cooper (like we do).

5. It's both wonderful and sad when she says, "I don't want oxygen."  I love hearing her talk, but hate that she has to have it when she doesn't want it.  The other day Brandy said her sats were 81 (I was in my office and Harlie was in the living room) so she went to go get the oxygen.  When Harlie saw the tubing, I overheard Harlie say, "I don't want oxygen." And then Brandy said, "But you need it." And then Harlie said, "But, I'm 81."  She looks at the pulse ox and looks at those numbers.  She never ceases to amaze me.

6. The other day she had her baby in her hands and she looked up at me and said, "I love her."

Nope.  Not going to take anything for granted when it comes to her.

Like when she made me get down the double jogger so she could take her baby.  How could I say no?

Or the time she tried to hula hoop with the big girls at a pool party.

I love the way she plays with Rooney.  Although, he might not always agree.

Minutes later I saw them having a heart to heart moment. While she was wearing swimming goggles.

And how could I not feel lucky when I get to see this...

Every time she rides her bike, I can't stop smiling.  She works so hard.  And she really is very happy.  I think this was her first summer doctor/hospital/surgery-free.  And she will be EIGHT years old this month.  Isn't that crazy???

Anyway, I will fight the sadness.  And I will continue to choose to find a happier perspective.  For as long as I possibly can.

Thank you for your love and support!
~Christy xo

Friday, August 1, 2014

Vacation in June and an Update

So long without a post!  Ugh!  Our life is full and busy, which is good I suppose.  But, to be honest, blogging about it hasn't been appealing to me for a long time.  I have been in a crummy place for a while now.  And time.  Time is such an issue.  My office has been taken over by Harlie's schooling and the kids watching Minecraft videos.  What in the hell is up with that?  I just do NOT understand that game.  And between my part-time job (granted, very part-time) and it being summer with the kids home, it's extremely difficult to get in front of the computer.

Anyway, I'll just start talking and see where it takes me...

Vacation, June 14-21

We went on vacation to Lake Anna with my family the week after school let out.  Tom had to work most of the week, so he wasn't there much.  Luckily, since it's only about an hour away, I had nursing for the week.

It was so great to spend time with siblings and my nieces and nephews.  They are such a fun group of kids and we just don't get to see each other as much as I would like.  So, that part was great.  The part that wasn't so great was how little Harlie was around us.

When we got there (it was a big house on the lake, with a really nice boat house) we found this float? tube? not sure exactly what it is intended for, but it was perfect for Harlie.  It had a mesh bottom, so it basically became a kiddie pool in the lake for her.

In that picture she wanted to sit in an additional float, just for fun, I guess.  Anyway, this was a perfect solution to keep her cool on hot days.  Although, to be honest, it's hard to relax around water with Harlie.  It's never far from my mind that everything could change in an instant.  Especially in lake water!  Oh, and someone told me after that week that kids with g-tubes shouldn't be in lake water because of the risk of parasites or something.  Awesome.  Luckily, there were no issues.  But, sheesh!  What's a girl with a trach and g-tube supposed to do for fun?!?!

Anyway, we got there on Saturday and she only spent some of Saturday and Sunday in the float.  After that it got too hot for her.  And some dragon flies came out, and she was done after that.  The girl does not like bugs of any kind.  The rest of the week she spent in the house with her nurse.  In the room where she was sleeping there was a TV with a DVD player.  She thought it was pretty cool to lay in bed and watch movies all day.  While that KILLS me, I try really hard to look at it from her perspective, and if she doesn't get to do that at home, I suppose that's what vacation is all about.

The other thing was that the house was not very close to the water.

Here's the view of the house from the dock.

And here's a view of the house and boat house from the water.

We took a wagon to help get Harlie and her stuff from the house to the dock.  But, with the oxygen concentrator, suction machine, etc., it was labor intensive to get her there and back.  And it was a hot week.  And Harlie just can't handle the heat.  Even when she goes into the water, she can't get her head wet.  So, it doesn't have the same cooling affect like it does for us when we can just jump in.  Anyway, it made me sad that she couldn't be with us, enjoying the same things we were enjoying.  And then I felt guilty for spending so much time away from her.

I know she still had fun.  She is always happy, that's for sure.  And I had a great time, too.  I got plenty of down time, and quality time with my family (minus my husband, unfortunately).  And I even got in all of my training runs!  Which I think is pretty impressive considering it was super hot, not good running terrain and I had my fair share of coconut mojitos.

Harlie got to fish, which was pretty much all she wanted to do.

Harlie's first fish!  And the only bass caught that week!

This girl cracks me up.

Dawn and Harlie

Cooper got in on the action, too!
My Mom and Dad got to ride jet skis...

My Mom (taking time off from chemo) and brother, Bruce.
It was awesome to see her have fun!

My Dad.

My Dad and Tom.
We went tubing.  Which is crazy.  Because I am just too old for that crap.

I am way too afraid of hurting myself.  I'm just not into that.  I thought that since I was on the tube with the FIVE year old, I was safe.  Apparently I was wrong.

I mean, look at this!  Poor Murphy!

Okay, maybe he thought that was fun.

Now, here's where it got real.  My new, and only pair of "nice" sunglasses that I've ever owned (that Tom got me for Mother's Day), flew off my head, never to be seen again!  I have included this picture for your enjoyment only.  Not mine.  Just look at the agony/fear on my face!!!

Yes, they told me not to wear them.  Did I listen?  No.  I repeat, I was on the tube with the FIVE year old, I thought it was going to be a nice, leisurely ride.  Clearly, I thought wrong.  

Apparently, while I may be tough on the inside - I'm a wimp when it comes to water sports.  And now I'm back to wearing cheap Target sunglasses.  Oh, the agony!!!

We sat on the dock and watched a storm come in.  We waited till the last second and then ran for the house.

One night for dinner we went via boat/jet ski to a restaurant on the water.  It was a night when Tom wasn't there and I didn't have a nurse.  The boys went on the fast boat, and Harlie and I went on the pontoon boat.  She loved it.

My niece, Jordan, just because I thought
this was such a good picture of her. 

Bruce and Nancy on the jet ski next to us.
When we docked at the restaurant, I realized we didn't have Harlie's chair.  So, she tried to walk.  But it was far.  So, everyone helped me by carrying something (her suction machine, my bag, her oxygen tank) so I could carry her.  It really wasn't that far.  But, it was to her.  And it makes me so sad to see how little endurance she has.  Any exertion at all is taxing on her and she just can't do it.  One second you feel great, enjoying a boat ride, and the next you get a slap in the face at the gravity of your daughter's heart and lung crappiness.  Sometimes it just sucks more than others.

Our last day was Friday.  Tom had to work and could only come out for half the day.  He brought Rooney with him.  So, he got to spend some time on the lake.

Not too far out in the water there was a table and volley ball net.  So, we played a game of beer pong.  Or two.  The under-aged kids just watched, of course.

Me and my beautiful nieces, Kelly, Maggie and Jordan.
Cooper with Poppy (my Dad).

Tom and I with the boys and Rooney.

Doesn't Murphy look so old in this picture?
Skinny.  But, old.

And Rooney liked it, too.

As did Harlie, of course.

I could so do lake living.

When Tom first got there around lunch time on Friday, he pulled into the driveway and him and Rooney came straight to the dock.  Harlie was inside with Dawn.  I was so excited to see if Rooney could swim that we put him immediately in the water to see what he could do.  He can swim, I just don't think he really enjoyed it that much.  So, I took a very short video on my cell phone and we didn't make him do it again.  Then Tom went up and got Harlie and brought her down, so she could see Rooney.

Hours later, we played and packed up and left.  Harlie and Rooney were in my car and the boys were in Tom's truck.  Harlie wanted to see the pictures on my phone (something she likes to do) so I gave it to her as we were leaving the house.  She came across the video of Rooney swimming and started to cry.  Like a legit, "I'm so sad and disappointed" kind of cry.  I turned to look at her and she said/signed, "Mama, I want to see."  She missed it.  She was in the house when Rooney was in the lake.  And she missed it.  And she knew it.  It's moments like these that kill me.  If her body were stronger - she would have been playing outside with the rest of us and she would have been right there.  With little to no effort.  Instead, just playing outside can be too much for her.  UGH!!!  How did this happen?!  Why?!???  Such futile questions.  It just sucks.  Plain and simple.

There's a bunch of other stuff I want to tell you about, but this is already pretty long, so I'll finish with a "quick" update on Harlie, medically speaking.

I can't remember if I already told you about Harlie's decreasing heart rate.  But, just in case, we realized in May that her heart rate was slower than it used to be.  And hanging out around 60 bpm during the day.  Seemed pretty low to me.  Her pacemaker was set to fire if her heart rate dipped to 50 while she slept, and 60 during the day.  If her heart rate was hanging around 60, that meant it was because her pacemaker was doing the work.

So, on June 25th, we went in to see her cardiologist.  He read her pacemaker and agreed, it was too low.  Basically, due to her heart disease, they expected that her heart would need the pacemaker full-time eventually.  Which, is where she is now.  He said that her heart was working on it's own only 12-14% of the time.  I think since she's now at a place where the pacemaker is taking over, he has more room to control it.  They've always wanted her heart to do what it could on it's own, then be assisted by the pacemaker.  It has been a struggle since her heart initiates a beat from all over her heart, at random paces.  So, the pacemaker couldn't predict what her heart was going to do.  Now, I think he can just set her pacemaker to do what is best, and it's pretty much taken over full function.

After making some adjustments, he said to make her walk up and down the hallway a few times so he could see what happens.  Brandy took her so I could chat with him without Harlie being able to hear us.

I want to know how long we have before things get bad.  But, he can't tell me that, of course.  I asked him what I should be doing and he said there's nothing I can do to change the way her lungs are.  Maybe her left lung will be strong enough to support her one day.  Who knows?  But, eventually, we will be at a place where our only hope/option will be a heart and lung transplant.  If only he could tell me when.  He said he would want us to think long and hard before going down that road.  It's a hard road, with a lot of pain for her, and not good outcomes.

I told him I can usually stay positive, but this latest info is kicking my ass.  I guess her doctors could tell that I had so many hopes and dreams for her.  I really thought she - we - were going to conquer all her challenges and one day, live a normal life.  I suppose from a medical professional perspective (who has seen way more than I ever have) they could see that I was living in la-la land.  The odds are just so against her.  There are too many challenges with too many of her body parts.  All it takes is one to go the wrong way...

I have never thought of her conditions as being "terminal."  Except when I was pregnant with her.  I knew the odds were stacked against her then, for sure.  But, it really seemed like after that, she could beat it.  We've never done anything crazy to keep her alive.  Just a whole bunch of surgeries.  None of them insane.  Sure, her leg bone is in her face.  But, even that's just another surgery day at Boston Children's Hospital.

But this?  When we get to the point where we really need to make a decision about this heart and lung transplant.... that seems insane.

And all my hopes up until now were fixable things.  Like, maybe another, different, jaw surgery will be the ticket to a better airway.  After this heart surgery, her heart will be better.  After spinal fusion surgery, her back will be better.  But, now, I have to hope that her left lung will just be able to handle the workload?  Even though right now, it can't.  At 7, and 46 pounds, it needs help.  But, maybe that will change.  Maybe there will be more medical advancements made in time to help her.

That's ridiculous.  How am I supposed to work with that?

So, that's where I am right now.  I need to find hope again.  And I need to figure out what I'm supposed to do when I hear someone say, "maybe she'll be a _____ when she grows up."  How do you live when you don't know how long you'll have your child?  Will she drive a car?  Get a job? Go to college?  I don't think about any of those things when it comes to the boys.  I just assume, that aside from some tragedy, that they will get to experience all of those things.

And for now, we have no focus.  We're not working towards getting the trach out.  We're not working on eating by mouth.  We're not working on ... anything, really.  For seven years, we've been working on things.  And now, we've stopped.  And I feel lost.  I don't know what to do.

When I was young, I worked at a small, family owned restaurant.  I was a waitress.  And if you ever did that, you might know what I'm talking about.  When the restaurant is really busy, you're on.  You have energy, you can remember stuff, you're working hard and feeling good about it.  But, after the rush, when the restaurant is empty and you only have a few tables, you suck.  You forget to check on them.  You forget their drinks.  You have enough down time that you can sit down for a second and then you realize how much your feet hurt.  Getting up again is that much harder.

That's kind of how I feel.  We've been so busy for so long.  And it slowed and I sat down.  And my feet hurt.  And I'm really freaking tired.  And now rescheduling that appointment with nutrition that we missed a few weeks ago seems an impossible task, that has been on my to-do list for weeks.  Going anywhere takes an exorbitant amount of energy.  And that layer of grief that is always just below the surface, is harder to rise above.

I know I have to figure this out.  Living with this sadness, I mean.  Maybe once school starts, it will be better.  We'll see.

Anyway, back to the pacemaker appointment... Harlie and Brandy returned from their walk and Harlie was definitely breathing heavy.  But, her sats were 84 and her heart rate was 120!  To put it in perspective, when we went to her cardiology appointment in February/March, we were in the waiting room and her sats were 90, on one liter of oxygen.  While in the waiting room at the end of June, her sats were 86, on two liters of oxygen.  After walking, her sats were 84 on two liters (but this was after physically exerting herself).  So, that's huge!

Now, a month later, on July 31st, she rode her bike around the block for the first time EVER.

What a wonderful change!  Granted, with training wheels and she went really slow.  We took the jogger stroller just in case she couldn't make it all the way around.  And we put the oxygen tank and suction machine in that and walked beside her the whole way.  I had to push on her back a little to give her a little help when the road was flat or inclined.  When she went down hill she would go two inches, and then apply the brakes.  It took us about 40 minutes to make it around.  But, she did it!  And she never once asked to get in the stroller, so that's awesome!

Happy Birthday Brandy!
I'm thinking that pacemaker adjustment was life changing.  She's had more energy in the past several weeks than she has had in years.  She actually sits and plays with toys instead of watching TV all the time.  I think she had no energy before - so it was easiest to just sit on the couch and watch TV.  Now she plays!  A few weeks ago, the bike got out.  I don't know how.  We got it for her years ago, and it had never seen the street.  But, she rode it around the house.

What?  Your kid doesn't ride her bike in the house while wearing a cat costume?  In July?

Okay, this has been long enough.  I have so much more I could share, but I am running 14 miles in the morning.  So, I have to get to bed.

Thanks for reading!  And thank you, as always, for your support.  Without my friends and family, I would be a mess!

Much love,
Christy xo