Post-Op Day 4

Hi All,

Harlie's swelling looks like it is marginally better today (compared to yesterday).  I'll add a pic in a bit.  I've learned that the first pic I add to my blog is the one that gets highlighted when I share the blog post on Facebook.  So, I'm sorry for all of those with weaker stomachs who hate me now.  They should just be thankful their kid isn't going through this.  Because we cannot wince or show any issue with looking at her.  Poker face.  All day, people. 

It is hard to believe how swollen she is, despite all the meds they are giving her to help with that.  God knows what she would look like if they didn't give them to her! 

She has attempted to look at her tablet several times over the past couple of days, but I guess she realized she couldn't see it/hear it.  So, she shut it.  Today, however, she was able to watch a show or two.  So, that's a little progress.  

Plastics always comes super early and her nurse told us that when they came to look at her incisions and drain site, Harlie signed "stop" and swatted them away.  You don't have to know sign to understand what she's saying.  Her gusto and attitude gets her point across.  

If the nurse shows Harlie the blood pressure cuff, Harlie willingly lifts her arm.  But, if you're coming for her IV or near her face, she is not as cooperative.  Tom and I have been watching Shameless and one of the characters wears a sleep mask that I think Harlie should have.  

I think it would be hilarious, but I wouldn't want to offend anyone.  So far, most of her doctors and nurses have had really good senses of humor.  So, I'm thinking it would've been okay this stay. Oh well, next time.  Haha!

So, this morning we called home to check on the boys.  I was on the phone with Maggie (my niece) and she went and sat on the slack line in our backyard.  While we were talking, she exclaimed, Whoa!  So, I asked her what was wrong.  She told me she fell off the slack line - so I said, "Tom, pull up the camera."  Haha!

Ahhh, I'm so sorry, Maggie, but this is too funny not to share!  I have to say that you didn't miss a beat, I would never have known you fell if you didn't tell me.  Your voice didn't change at all!  I have laughed so hard watching this video!  I cried tears of laughter!  You totally made our day better!  And you're such a great sport!  Love that about you! Thank you, Maggie! 

So, here's how Harlie is looking today, on Day 4.  

She stares at me.  I've asked her several times if she is mad at me and she shakes her head, "no." I then sign and tell her I love her and that I'm sorry and she signs that she loves me.  But, damn, that stare!  I'm not sure I believe that she isn't mad.  And, really, I couldn't blame her! Our poor, sweet girl!  Oh, our hearts are aching!

I have uploaded so many pictures, just to delete them.  I want to share them, because it makes me feel like we are less alone if everyone else has to see what we have to see.  But, then I realize that probably isn't fair to you. The bruising goes from the top of her chest (collar bone area) to behind her ears and into her hairline.  We keep telling her it will all go away.  She doesn't appear to be comforted. 

Harlie watching the backyard camera with Maggie, Cooper and the dogs
talking through the phone.

The team rounded this morning.  The attending cardiologist is her cardiologist here and we just saw him pre-operatively on Monday.  He's one of the few people who knows what she really looks like.  I told Tom yesterday that I wish we thought to print out a picture of Harlie to put on her door.  

Anyway, she is now on all meds through her g-tube.  So, assuming all goes well today through tonight, we are planning to take her home tomorrow.  Tom found a car to rent, so he will go to the airport to get that taken care of tomorrow morning and then head back to the hotel, load up the car, check out, then come to the hospital to pick us up.  When we told Harlie we were going to go home tomorrow she pointed to her face.  So, Tom told her we are going to drive instead of flying home.  

Her nurse told me that when she took her to the bathroom, Harlie wouldn't go to the sink to wash her hands because she didn't want to see herself in the mirror.  I knew that, but it is kinda crazy that Harlie is able to get that feeling across to other people, too. 

Normally, I feel pretty good about taking her home, but this time, it feels weird.  She is telling us she isn't ready to go home.  We think she doesn't want anyone to see her.  We've asked her if she wants to go for a walk on the floor, or out to the garden, but she says no.  I know each day will get better, but it is still hard to constantly make her do stuff she doesn't want to do. I am fine taking her home.  I am just worried that all the moving around is going to hurt her.  The bumps in and out of doors in her wheelchair, for example.  I wouldn't even consider walking her down the street with all the uneven pavement!  Doesn't that just sound painful when you're head is aching?!  And oh, the looks we are going to get!  

We were able to convince Harlie to let us give her a shower today.  It was tricky because they don't want us to get water on her IVs (one in each arm) or in her ear.  I think I did a pretty good job, considering.  After her shower we did her wound care, I changed her trach ties, put her hair up in two little buns and I think she felt so much better.  She wanted to sit in the chair instead of getting back into bed. That's great!   

She asked for Legos, so Tom went to a local toy store and got her some.  She wanted to do it, but she got so tired and had to stop.  Man, it is hard thing to see a kid not have the energy to play. 

Side story, usually I don't remember my dreams. And I can't believe I'm going to share this with you, but I think it is so funny.  I am in a Fantasy Football league with some family and friends. And we have done it for the last five years or so. Last night in my dream, it was like 3 weeks into football season.  I made a comment to a family member that is in the league that I was sad we didn't start our league this year, and I was missing it.  They looked at me like, oh crap.  And I realized that they started the league without me!  I asked a friend if she was in it and she said, "Of course!"  So, I started to cry and walked away.  Hahaha!  I woke up and thought, what month is it?  Oh, April!  Whew!  Just a dream.  Haha!  I have giggled every time I thought about it. Silly.

Well, I'm going to wrap this one up now.  There have been lots of interruptions, so my thoughts are all over the place here.  Thank you for all the love!

Much love,

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

Snow Day!

First, I want to say thank you to those who still check this blog for updates.  I really feel like I've been letting you down lately.  It's just been such a rough couple of months.  Time seems to evaporate so quickly.  And the kids have barely been to school since winter break in December.  It's pretty much impossible for me to accomplish anything with them around.

Anyway, I'll start with something kinda quick, to get me back into things...

It snowed in Richmond.  Again.  And again, we had more snow days - with no school.  This time was the first time that most people didn't work.  So, it was really fun to have Tom around.  And our lovely friend Dale came over to hang out.  She got us motivated to go sledding.  Thank you so much Dale!

And thank you to everyone who gave us winter hand-me-downs!  We could never have pulled this off without you!  I think everything the kids are wearing were given to us!

Harlie was happy to be out.  I was SHOCKED that she wanted to go sledding.  We took her off the oxygen to go down.  The walk up required a shot of it when we got to the top.  So, Tom carried her up the rest of the time.  We ran into a bunch of neighbors at "the Rivers Edge hill."  We had a blast!

Happy Harlie!

Me and Rooney.  He's never far from me.

Me and Cooper about to go down the hill.
Rooney might be a little jealous.

Cooper and Murphy.
The snow was really coming down!

Me and Lindsay.

Me and Dale.

Being a kid.

Heavy snow!

Dale and Harlie.

Dale and me.

Me and Harlie.  And Rooney, of course.

Tom and Harlie with her hands up!

Me and Tom.

We had so much fun!

Harlie even went down solo once!  After a little while, she was done.  So, she sat in the truck with Tom's phone (and her oxygen) and took off most of her clothes.  Kids are so funny.

We really had so much fun.  And I am so thrilled that Harlie was a part of it.  I try not to think about the future too much - but I do really hope that one day, she can come off that oxygen.

Tom just took the boys to Wintergreen to go tubing.  Maybe we'll have to see if we can pull off taking Harlie.  I think it's pretty clear that she would love it.  I just don't know how to work the logistics of the oxygen.  I'll have to work on that...

Today has been another lazy, snow day with the kids home.  But, Cooper made my day.  Harlie told me (signed and tried to verbalize) that Rooney was dirty and needed a bath.  When I went to look at him, it appears that he's been colored on with a marker.

Me:  Cooper, did you draw on the dog?
Cooper:  Not today!

I have been laughing about that all day.  And he said it with pride, too.  Too funny!

More soon!

Much love,
Christy xo

Harlie Update and fantastic news!

It has been so long since my last post.  I am going to write some updates, and post them as I finish.  They will likely be in random order, based on what I feel like writing about first.

Harlie Update

She's been on home bound schooling since the week before Thanksgiving.  It has definitely been a nice change for us.  But, at some point, I am going to have to send her back.  I was so hoping to send her back with NO oxygen.  But, that isn't to be right now.  When I ordered her monthly supplies last week, I had to make sure I replaced all the empty oxygen tanks so we would be ready for that again.  Ugh.

As far as when to send her back... as things stand now, we are supposed to see a pulmonologist at Children's National in DC.  We are waiting on that date now, but am told it should be within the next two weeks.  Her docs there (cardiologist, ENT, pulmonologist and her social worker) have been emailing back and forth to come up with a plan.  Once we meet with this pulmonologist (who we have not met yet) he will go over some things with me and determine if he thinks a sleep study is warranted.

To recap why they were talking about doing a sleep study.... One cause of higher pressures in the Fontan (her heart circulation, sort of) is a higher level of carbon dioxide (CO2) in the blood.  A cause of higher CO2 can be sleep apnea.  They would like to rule out sleep apnea before they start treating her with medication.  But, given that she already has a trach, I am thinking obstructive sleep apnea isn't likely (since the trach prevents anything from obstructing her airway).  Since she sleeps with a pulse ox (which indicates the patient's heart rate and the amount of oxygen in the blood) I am doubting she stops breathing at night, which would indicate central sleep apnea.  I would have thought by now that we would have seen her desat while sleeping.  But, who knows?

Anyway, I guess her ENT and the pulm must have talked about this because now we are to meet with him and then he will decide if she needs a sleep study.  I'm grateful they really want to think this through before putting her (and me) through a sleep study.  Given Harlie's opposition and great dislike to anything sticky, the probes that they put in their hair (or on their head) would be torture.  But, if it's warranted, then we will get through it.  And they have spoken with the director of the sleep lab and will get her in asap if that's what they decide.

So, now I'm thinking of keeping her home until we have this appointment, so he can see her at her baseline best.

My gut tells me that in the long run, we won't get many answers.  This might just have to be something we accept as her new normal and we try meds, and wait and see if they work.  I am not looking forward to the wait and see game.  So far, she had a problem (or many of them), we figured out what was a priority, and we "fixed" it, or made it better or in some cases tried to make it better.

This is something we can't just fix.  Surgery isn't an option.  So, this is new territory for us.  And now I can see the effects of this pressure change - in her oxygen requirement and continuing clubbing fingers and toes.  Basically, the clubbing is due to prolonged oxygen deprivation aka low oxygen saturation her whole life.  Here are her toes...

I know it could be worse but it still kills me just the same.  I can see her heart defects when I see her fingers and toes and it makes my stomach hurt.  It is a constant reminder of what battle is going on inside her body.  And no one wants to see that.

Soon after her heart cath in mid-December we tried weaning her from the oxygen during the day.  She did okay, I guess for a few days.  She seemed to be in the low 80s and then in the high 70s.  A typical, healthy person is near 100.  One day I noticed that I couldn't get all her food in her that day.  It just seemed that every time I went to tube her a feeding, she had a lot of residuals (formula was still in her stomach from the last feeding) and complained of feeling full all day.  You can't force it in, so she didn't get all four cans.  Then Brandy told me the same thing after she was with her all day.  This happened for several days in a row.  This could be a sign of poor perfusion to her stomach due to the low oxygen saturation levels.  Basically the body is sending oxygen to the most important organs.  Once that happened, I put her back on oxygen and haven't taken her off again.  It's not worth that.

So, what if we can't stop the pressures from getting higher?  What if meds don't work?  What then?  Waiting for those answers aren't going to be easy.  I know this has happened to other kids and the outcome wasn't good.  It's just hard, living with this kind of worry.  I am trying very hard to focus on the positive.  She's happy and seemingly unaware of anything amiss inside her body.  She willingly wears the oxygen and doesn't complain.  We give her little breaks - like to take a bath.  I think she could probably tolerate a quick trip somewhere without it (like to Target or something).  But, at this point, the worry I have about something happening (car accident, me running into a friend and talking for an extra 15 minutes, a sudden change with her, etc.) makes it not worth it.  I would rather her have it when she needs it.

She has shown a crazy sudden interest in food.  She even asked to eat once.  Tom gave her some yogurt and she took a few bites all on her own - holding the spoon herself, with no reward other than a "Good job, Harlie!"

She wants to watch Tom cook and she wants to stir it, or put the salt and pepper on it.  We let her and Tom tells her what everything is as he is making dinner.  "This is celery, Harlie."  She's also been tasting stuff with her finger - like syrup, butter, salt, sugar, etc.  And we've been telling her if it tastes sweet or salty (since those are things she's never experienced and likely didn't even know the language).

So, that's where we are with her.  Plugging along one day at a time.  Focusing on the haves instead of the have nots.

And to end with a FABULOUS piece of news... My dear friend Lynda (founder and organizer of We Heart Harlie) applied to be a beneficiary of the Deep Run High School Marathon Dance.  Every year the high school students organize this event and raise money for 12 local organizations.  Last year they raised just under $245,000!  Isn't that amazing?  Well, right before Harlie's heart cath last month they had an event at the bowling alley with all the applicants.  Groups of students on the committee went around and spoke with each applicant's group to get to know them better.  Lynda and I talked for over two straight hours.  Harlie was there and thank goodness I had Brandy with us, because I could never have been able to speak without her there.  Anyway, it was emotionally exhausting talking about Harlie and the past seven years to so many people in one night!

Well, we just found out that We Heart Harlie was selected to be a recipient this year!  Can you believe it?  We are more thrilled, blessed, lucky, etc. than words could say!  To see We Heart Harlie among the other organizations was surreal.  I will never be able to thank everyone enough.  Never.

Too grateful for words.

Much love,
Christy xo

Harlie says, "I love you" to me.

Just a quick one to let you know that Harlie is doing well.  She's very happy and playful and rarely complains of pain.  I've decided to keep her home from school this week.  The bruises are fading more and more each day.  So, I think it's best not to rush back to school and either upset other students, or have them upset her by staring at her.  I know they wouldn't mean to upset her, heck, I stare at her a lot throughout the day!  But, I'd rather not risk it at this point.

I have been neglectful in taking daily photos of her to show how she's looking.  But, I did manage to get some video last night.  Kim came over yesterday to cut the kids' hair.  Later that night, I gave Harlie a bath.  I take her off the oxygen for her bath and while getting ready for bed.  Then all of a sudden, out of the blue, she put her finger over her trach and said, "I love you."  I couldn't believe it.  It was so cute I could have died!  I ran downstairs and grabbed my phone and took some video.  You can tell that she gets so excited to hear herself.  She hasn't been able to wear her cap in almost a year.  So, we've heard so little of her voice.  This was so wonderful...

and later on...

I've watched these videos like a million times.  She is such a sweet goofball!  I just can't get enough of her!

More soon!

Much love,
Christy xo

Birthday Parties

Wow.  I just can't believe how little I've been able to blog lately.  Pitiful.  

I'll start with Harlie's birthday party yesterday.  I don't know what's wrong with me lately, but I am forgetting everything.  Things have been really busy, and I've been having a difficult time keeping up.  It doesn't help that I am a terrible "planner" of anything.  Other than Harlie's medical journey, of course.  I actually feel pretty good about myself in that department.  But, I guess that's what happens when you have to put all your energy (okay, most of it) in one place.  And I do think that's a pretty important place for me to focus on.  Harlie is counting on me!  

So, birthday parties... I'm just going to come out and say it... I hate 'em.  I'm really, really bad at planning them.  And I see lots of moms on FB sharing their awesome kids' birthday parties, and all the awesome hard work they clearly put into them.  All because they love their kids and they are really good moms.  The BEST party planner EVER is my friend, Susan.  And if she didn't live on the west coast, I would totally hire her to help me (do it for me) and call it a day.  You can see a glimpse of how talented she is here and here.  Susan, I hope you don't mind me bragging about you, but you are an amazing party planner!  

I see those pictures and think Harlie deserves that kind of celebration of her life.  There were a lot of months I wondered if we'd ever be able to celebrate a birthday for her.  I consider every day with her a bonus.  I think about her life and potential death more than I'd like to, I can promise you that!  So, shouldn't I be doing all that planning and decorating and stuff for her?!?!?  

But, I can't.  I just don't have it in me.  There's not enough time or energy (or talent, truthfully).  And frankly, I don't think she really cares.  It's hard to tell without her being able to talk to me and all.  So, let's just go with that she doesn't care, okay?

This year, I'm blaming my lack of planning ability on Harlie's jaw surgery.  It was August 24th, and between that and the start of school, I had to focus on other things.  Her birthday is September 25th, so I really would have started to plan before her surgery.  Which was only one month before her birthday - so even that's not a good excuse.  Plenty of people start planning way before that!  But, before that, all I could focus on was getting to Boston - healthy.  And then getting home healthy as soon as possible after that.  And, keep in mind that I had no idea what to expect as far as recovery time post-op.  And considering she would come home without a bone in her leg, I had no idea what kind of recovery that would be.  Who knew she'd be walking so well so soon???

Last year, we had her birthday party at the The Little Gym and we invited all the girls from her kindergarten class, plus some friends.  Since her birthday is right after the start of school, there's no way to know who her "friends" are/going to be.  So, I just invited all the girls.  It was a great way for them to get to know her and see her having fun and playing, just like them.  And she loves gymnastics.  It was also a great way for me to get to know some of the other parents in the class.  And it really went well.  It was a great group of girls in her class last year and I have to say that I miss them and their moms terribly this year.  

So, this year she missed the first week or so of school.  So, there was even less time for them to get to know each other.  Plus, remember that I was focused on Boston, right?  So, by the time I thought, "oh shit, I need to plan a birthday party!" the easiest thing to do was call The Little Gym again (the gym I wanted to go to has stopped doing parties for now) and the next available date was October 20th.  Awesome.  

Then, who to invite?  If I invited her friends (like from her Daisy troop) or our friend's children, plus her classmates, it would be way too much - too overwhelming and too expensive.  So, I focused on building relationships with her classmates.  Which, I still felt bad about because, what kid has a birthday party where you don't invite their "friends" but people you want your kid to be friends with?  I found the whole thing to be a difficult situation.  Seems everything is complicated.  Even when it shouldn't be.  

It also didn't help that our follow-up appointment in Boston was October 19th.  So, we flew up on Friday and then flew back Saturday morning (landed at 11:30am).  Also, as a bonus, Harlie threw up most of the way home on the flight.  More awesome.  I could tell she didn't feel good.  And she hasn't thrown up like that in years.  The flight was a little bumpy (but not the bumpiest we've experienced) so I didn't know if it was motion sickness, or if she caught a bug.  We really thought we were going to have to cancel the barely-planned birthday party!  

But, once we got her home and on non-moving ground, she appeared to be just fine.  So, the party was on.  

The party was at 4pm, and at 3pm, I realized I forgot all about goody bags.  And for the record, I HATE goody bags.  The parent that started that stupid trend should be shot, in my opinion.  Talk about an over-achiever!  So I sent Tom to the dollar store to get some puzzles and coloring books.  I am not going to buy anymore junk toys to put in bags.  I just did it - against my better judgment - for Cooper's "party", and I refuse to do it anymore.  There.  I'm done.  In fact, I talked to a mom at Harlie's party who said she doesn't do it - so I now know I'm not alone!  Power to the moms who say "NO MORE GOODY BAGS!"  Who's with me????

Once we got there, I realized we forgot candles for the cake.  And the camera.  Really?  I'm a mess sometimes.  So, I had to use my phone for pics and luckily, they had candles there.  

I'm guessing that those who know me, know I try my best and that I have things on my plate that are not the norm.  To cut myself some slack, if I didn't have to focus so much on which surgery needs to be done next and where it should be done, or which therapies to work in our schedule, etc. I would probably be a lot better at all this "normal" stuff.  But, when I go out into the world and people who don't know me see how forgetful I am, I can only imagine what they think about me and my crazy family.  

Here's the best picture I got with my phone.

And here's the funniest moment from the party...

Despite the craziness of the day, or of the last month, she did have fun.  And that's really all that matters.  And I think her friends had fun, too.  They got to play together.  So, to me, that's a success.  Plus, if you really want to get down to it, Murphy's party was like two months after his birthday, and Harlie's was only one, so that's an improvement.  Cooper's was less than two weeks after his birthday.  But, his kind of sucked....

And I never even blogged about his birthday!  Ugh!  His birthday is September 26th (the day after Harlie's).  Cooper wanted a party at a playground.  It's all he talked about.  So, that's what we planned.  Except it rained all that day.  So, we had to move it to our freaking house.  And the LAST thing I want to do is have to plan activities for a party I don't want to plan!  That's why the playground is perfect.  So, the party ended up being a "play date party."  It was all free-play.  No structured activities.  

I really felt crappy during and after that party.  And I was really beating myself up about it.  Then, the next day, out of the blue, Cooper said, "Mommy, I really had fun at my birthday party."  It wasn't even what he asked for - repeatedly, for months - and it had to be changed at the last minute due to bad weather.  And all I paid for was his cake, a single balloon for the mailbox, junk for some goody bags and the reservation for the stupid playground ($25) that we never used.  Yet, he was perfectly happy.  Isn't that amazing?  It just goes to show you that kids (at least my kids anyway) really need so much less than we think.  That's what I'm going with, anyway.  

Okay, I think the next post will be about our Boston trip.  Stay tuned!

Thanks!

~Christy  

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

Harlie's 5th Birthday Party

Just trying to get caught up... yes, her birthday was over a month ago.

Here are some photos from Harlie's 5th birthday party.  We had it at The Little Gym because we could tailor it more to what Harlie was allowed to do physically, since her spinal fusion.  We kinda didn't follow the rules, exactly, and let her hang from her arms a bit.  I wanted to keep the party kinda small.  And I wanted to promote some relationship building with her classmates.  So, we invited all the girls from her class (most were able to come) and some friends that are about her age.  Of course, the boys are Murphy and Cooper.

Can you believe how much shorter she is than everyone?

Aside from Peyton (in the yellow dress) and Cooper and Murphy, of course, all those kids are in kindergarten.  And Peyton is three and she's taller than Harlie.  Heck, Cooper is only two inches shorter than her.  He is totally going to pass her.  And that's going to be really weird.  At the pool this summer I was asked if Harlie and Cooper were twins.  Oh my sweet little girl.

This is the point when we just couldn't tell her no.

But look how happy she is!  How could we deny her that on her own birthday?

Monkey see, monkey do...

Harlie signing "bubbles"...

Harlie's "cake."

This was the first time she's ever blown out her own candles!!!  And I wasn't expecting it, so I didn't capture it on film.  Darn it!  She really did great!  And those of us there that understood what just happened were like, "YAY HARLIE!!!"  And I'm sure the kids were like, "What's the big deal?  She just blew out her candles."  Ahhh, it's the little things.

That PMV (the purple thing on her trach - it allows her to inhale through the trach, but then closes, which forces the air out of her mouth and nose.  This allows air to go through the vocal chords, which is how you produce sound) has been AMAZING!  We have been working so hard to get her to tolerate it for years and years.  And it is finally paying off!  She's actually quite loud now.  And it allowed her to blow out her candles!  And it makes her sneezes sound like the cutest thing you've ever heard!  The first time I heard her sneeze while wearing it - I cried.  It was the sweetest sound!

And speaking of her PMV, I heard from a representative from their company recently and she wants me to submit a little write up about Harlie and her PMV to be included under their Patient Stories section.  YAY!  I'm so honored!  So, she sent Harlie a little package this week and this is what Harlie did for the first time (thanks to the PMV)....

Thank you so much, Julie!  I am so grateful for a product like this!  Yet I have a love/hate relationship with the trach.  Weird.

Well, hopefully I'll have more posts soon...

Thanks!
~Christy

Appointment with the surgeon...

...eh, not what I hoped for.

She wanted Harlie to wear the brace for another month.  But we compromised with two weeks.  That way she will have it off for school.  I told her that she doesn't complain - it's me that hates it.  And I recognize that the long-term goals of healing are more important than the pain of dealing with the brace, so if she really wanted us to keep it on, I would.  But, she said that two weeks will be fine.  That way when she goes potty at school, she'll be able to do it on her own.  It is hard to get her shorts up and down with the brace because it goes past her hips.

So, I'm thinking her surgeon would not have approved of this activity...

Notice Cooper posing.  What a ham!

Weeee!

And of course, some video...

How could I deny her this fun?  There is only so much activity I can make her miss.

Anyway, when she gets home after school, we need to put the brace back on her for the rest of the day.  And over time we can wean her off the brace by waiting longer and longer to put it back on her.  She said that it can actually be more of a discomfort to stop wearing the brace cold turkey because all those muscles haven't had to work much over the last five plus months.

I asked if she could resume normal activity once the brace comes off.  I had my hopes up for a gymnastics birthday party for her since she loved it so much and hasn't been able to go since the surgery.    But she said no.  No gymnastics until she sees her next and she will decide then.

So, the next time we see her?  MARCH 2012!!!!  I am SO bummed!!!  She loved gymnastics!

On a positive note, the surgeon said that her x-rays looked "beautiful."  On the side view one, she is much straighter than she was.  She said that she could start to curve forward over time - but she hopes that doesn't happen.  Of course.

Harlie is so cute getting x-rays.  She stands there and does everything the x-ray tech asks her to do.  And he was hilarious because he said, "okay, move your little foot back some.  Exactly." and then "bring your little feet together.  Exactly".  He was cracking me up.

Oh, and she can only carry a light backpack.  Which, I already knew, really.  But it just goes to show you how long this recovery is taking and how many things are affected.  Spinal fusion surgery is no joke.  I think I would have to say it has been the worst surgery so far.  And I sure hope we don't have to do it again.

On the way home there was an earthquake that measured 5.9.  The epicenter was in Mineral, VA, 25 miles from our home.  According to FB, it was felt from North Carolina to Canada.  We were in the car not that far from home, and we felt nothing.  I guess when you're moving 70 miles an hour in a car, you don't notice the ground shaking.  So, I apparently missed the biggest news story of the day.  Oh well.

Oh, and would you believe our luck?  We decided just a few days ago to try and take the kids to the beach - together - all of us - as a family.  Harlie has never been.  Tom took Monday off.  And after I run the Patrick Henry Half Marathon this Saturday, we were going to go to Virginia Beach to stay with some friends who we haven't seen in a long time.  We were going to go to the beach on Sunday and take a baby pool and umbrella for Harlie (since she cannot go into the water - other than just her feet, of course) and we were going to have so much fun!

And now Hurricane Irene is totally screwing up our plans.  The only FUN plans we had for the entire summer.  I am so, so disappointed!!!!  And I don't think we can squeeze it in after the storm passes.  A whole summer and the kids have done nothing exciting.  The boys and Tom went camping and boating a few weekends ago - but Harlie had to stay home with me.  I am so mad at myself for not making more of an effort earlier in the summer.  But it was SO busy!!!  Well, I am not giving up hope yet - but according to reports, it is not likely to happen.

Oh!  And my nephew, Charlie, is playing in the Babe Ruth Little League 13-year old World Series Tournament in NY.  Well, tonight his team won and Charlie got MVP!!!  He hit the winning run.  So now they play again tomorrow night.  What a great experience for him!  Congratulations, Charlie!!!

Okay, that's it for today.  More later!
Thanks,
~Christy

CT Scan and a Video

Today's CT scan went beautifully!  And for the first time, she was able to do it with NO anesthesia!!!  How exciting!

When I took the exit off the interstate and she saw the parking deck to the right, she started to cry/whimper.  I told her that it wouldn't hurt if she could stay still.  That's all we said to her, over and over again.  It's hard to tell if she understands something like that.

The anesthesia folks came to talk to me when we got there and I told them I wanted to try it without anesthesia first.  So, a nurse came to get us and told us that they were going to take us to the fastest machine they have.  She only had to stay still for about 15 seconds, I'm thinking.  And she seems to understand that for x-rays, so I thought maybe she could do it.

Before I put her on the table I kneeled down and told her that if she could stay still when I told her to, that it wouldn't hurt.  She didn't cry at all.  In fact, she didn't even seem scared!  That amazes me.  After all she's been through!!!  If anyone has the right to be freakishly scared at a hospital - it's her.  She's so darn brave it kills me!

So, we put her on the table and the nurse wrapped her like a burrito - and Harlie didn't protest one little bit!!!  Look at my big brave girl...

They put a lead apron on me and I stood right next to her.  When the nurse told me they were about to start imaging, I signed (I had to take Harlie's hearing aid out for the scan) for her to hold still and not to move.  And Voila!  She did it on the first try!!!  She had to lay there for a few minutes more to make sure that the images were good and that there was no motion in them.  I will go back in a few days to pick up the discs with the images and radiologist's report.  Then, we'll start to work on getting some surgical opinions.

Our appointment was scheduled for 12:30pm and we got there at 12:00pm.  It took a while to take us, but I'm thinking it was close to 12:30.  I was back in my car and exiting the parking at 12:47pm!!!!

What a great experience!  And every time we have a great medical/hospital experience, we are making big strides in Harlie's fear, comfort and trust.   I am hoping that she will start to trust me that when I say it won't hurt - that it won't hurt.  And when the time comes, and I have to tell her that it will hurt, but it will be quick if she cooperates, maybe, just maybe she will understand.

I can already tell a big difference in just a few months (before spinal fusion).  She used to refuse to let the admitting person put a hospital bracelet on her.  I would have to hold her down so they could get it on.  To her, that meant that she was staying and she wanted nothing to do with that.  Well, today, I asked her to stand up and let her put the bracelet on.  And she stood right up and held out her arm - no problemo!  Oh, it really is the little things in life!!!

Later on in the evening, Cooper got a bloody nose (accidental friend's head to Cooper's face).  He also must have gotten something in his eye while playing outside, because his right eye was starting to swell before the incident.  And that head butt didn't help matters.  So, we'll see what he looks like in the morning.

Then, after that, Harlie was watching one of her current favorite you tube videos.  Seriously - kids and electronics are totally out of control.  I don't know how she found this guy, but she did.

And this was her tonight...

I totally love it.  More than words can say.

Thanks!
~Christy

Cooper

Cooper is talking more and more every day.  I was slightly concerned a few months ago.  But, in the last few weeks, he has really made some crazy progress.  Honestly, one of the things that I think sparked his talking interest was the show Signing Time.   He repeats every word he can while watching it.  I think we have every video (thank you to the contributors of The Harlie Fund).  And he signs, too!

Tonight, as we were getting the kids ready for bed, Cooper and Murphy were running around wildly.  I was about to change Harlie's trach and didn't want Cooper running around us.  So, I looked at him and said, "Cooper, I think it's time you sit and look at some books." Then he said, "No way.  Cookies!  Cookies!" and ran out of the room.

Well, I'm glad we had this talk, Cooper.

I was thinking I should start writing things down, or I'm going to forget.  So, at this point my favorite words he says are:

1.  Cuppycake (for cupcake)
2.  P.B. (for T.V.)
3.  Ben (for Murphy)  I really don't get this one AT ALL.  We've all racked our brains and we've come up with SQUAT.  I certainly get that Ben is easier to say than Murphy.  But I don't know where on earth he came up with it.
4.  R.E. (for Harlie)  Now that's just cute.
5.  Mommy (for Daddy)  I have to admit that this isn't a favorite.  I think it's just worthy of noting.  Trust me when I say he says Mommy just PLENTY when referring to me alone.  To add Mommy for Daddy, well that's just mean.

Here's him talking a few months back - before the vocabulary increase.  But I probably didn't need to tell you that.  I'm pretty sure you would have figured that out for yourself...

He still goes on rants like that.  If only I knew what he was saying.  I'll give you a million dollars if you can figure it out.  Good luck!

Thanks,
Christy

Some new skills!

I've been wanting to show you this video for a few weeks.  It was taken on October 28th.  Harlie can sign her ABC's with no help!  And she tries to verbalize a lot of them, too!

She practices a lot.  The other day, she did them with both hands at the same time!  I love that she finds it fun to sign.

And she can write her name!

I have a video of her doing that, too, but for some reason it won't upload.  I'll try it in another post and see if it works.  Those are window crayons (thanks, Grandma - they love them!).  Last week at school her teacher asked her to write her name on the back of her art project - and she did!  It wasn't very long ago (like two weeks, maybe) she could only write the H and the A.  And we don't need to spell it for her - she knows exactly what letters to write!  That girl amazes me every day.

There's a new post below this one (from last night) and hopefully I'll have another one today.  I have a lot to tell you to bring you up to speed!

Thanks!
~Christy

Feeding Therapy Update

Harlie is feeling better and went back to school today.  Today was Therapy Thursday, but her feeding therapist had to cancel and it was rainy and yucky outside, and I was feeling really crummy and tired, so I cancelled the rest of her therapies and sent her to school.  She finally has a morning bus assigned (I've been taking her to school every morning, except for Fridays, when she takes the bus).  It's confusing because her schedule is different on Thursdays and Fridays.  She goes to school at different times during the week.  It looks like she'll be taking the bus every morning starting next week, which is great.  For one, she loves it.  And for another, it will save me a ton of time every day.  That will be a great relief.

I have a lot to catch you up on, but I'll start with Feeding Therapy for now.

She has been on the waiting list for the intensive feeding program here in Richmond.  The feeding program is considered one of the best in the country and people travel from all over to attend.  Entry into this program has been a goal of ours from very early on.  Well, Harlie's name came up - and as crazy as it is - it turns out Harlie doesn't need it after all.

Seriously crazy.

So crazy, in fact, that it took me a few days to really come to grips with it.  It's just weird.  We've been talking about getting her to the point that she was a candidate for so long - it was kinda hard to accept.  And, this is a GOOD thing.  In fact, it's a GREAT thing (logistically I didn't know how we were going to do it anyway)!  The whole point of intensive feeding therapy is to get the child to eat a variety of foods, and to wean from the feeding tube.

And can you believe it?  We have done both!!!  Now wait... I should clarify.  We haven't completely weaned from her tube - but most days - she reaches her calorie goal - completely by mouth!!!  It's exhausting (for all parties) to feed her four times a day (and sometimes we have to tube her depending on what's going on).  The setting has to be "right."  We have not tried oral feedings out in public yet.  We are going to do that during therapy soon - we'll go into the cafeteria there and feed her and see how that goes.  I'm expecting that to be quite challenging.

So, we are hardly weaned from the tube.  But, we are so much closer than I ever thought we'd be.  And intensive feeding therapy just isn't necessary at this time.  I'm sure there will be plenty of opportunities.  She still has to learn how to handle some texture - and we can't even think about chewing.  Odds are she probably can't chew food until she has another jaw reconstruction to even out her jaw.  Ugh.

I think we would all agree that feeding her is a joyful experience when she's a willing participant.  But sometimes, she wants no part of it.

Nice, huh?

She's been wearing her PMV a lot more lately.  She definitely does better at keeping it on during school than when she's at home.  I know it's because she knows she can get away with it at home.  But, there are only so many battles I can fight at one time.  And I'm thinking the more she wears it at school, and sees that she can make sounds and get some attention, eventually getting her to keep it on all the time won't be a battle.

Here's her saying "dinosaur":

Pretty cute, huh?  You should hear her say "all done."  That is very clear.  Hearing her voice is totally awesome.  The other day, we went outside and she sneezed.  And it was the first time I had ever heard her sneeze - like a real sneeze sound!  It was so darn cute I stopped in my tracks.  I wanted her to do it again.  Talk about enjoying the little things!!!

Okay, that's it for tonight.  I will post some birthday pics soon.  

Thanks!
~Christy

Another great moment!

Today was another successful day of Harlie wearing her PMV.  It is SO exciting!  And not just for talking.  Wearing it causes a chain reaction of positive things like a better, stronger swallow, less secretions - which means less coughing and less suctioning (can I get an Amen?) AND communication!!!  Woohoo!!!

So, tonight was back to school night at Murphy's school.  I walked there and Tom stayed here with the kids.  On my way there Tom called my cell phone.  He said, "Listen to this". And held the phone up to Harlie and I HEARD her say - CLEAR AS A BELL - "My turn".  It was the coolest thing EVER!  I couldn't believe it was her!!!  It was SO awesome to hear her on the phone!!!!  What a great moment!!!

Earlier today she said "dinosaur."  I need to get that on video.  She is very faint when she says it - almost a whisper.  But it is SO cute!!!

Although she is making HUGE strides (I can only guess that progress will really start to take off as soon as she realizes what her talking can do for her) communication is still difficult.  Tonight after we put her to bed she started crying.  She never does that.  She really never cries unless something is hurting her or she didn't get what she wanted (and that usually only lasts a few seconds).  I went up there and I'm assuming that she was scared - but that's really only a guess.  She appeared to be looking at something in particular - but I couldn't figure out what it was.  I'm thinking that maybe it was a shadow that she could see before I turned the hall light on and that she was looking for it when I was there.  I don't know.  At any rate, she wouldn't use any signs or her communication device to try to tell me what was wrong.  We just sat there for a few minutes and she finally laid back down.  It was weird.  I hope she didn't see dead people. Because that would be freaky.

Today was Therapy Day.  I forgot my camera.  But I just realized that I never showed you the pictures from last week's physical therapy appointment.  So, here's a video:

Personally, I was pretty impressed she could do that.

Here's Harlie and Traci scooting around...

And Traci tested out a lift for Harlie's right shoe.  You might remember this photo from a few posts back...

As you can see, her right foot has to be on it's toes in order for her to stand "straight."  Since her hips are crooked it gives the appearance that one leg is longer than the other.  So, we are going to work on getting her a lift for the "shorter" leg.  Unfortunately, it looks like she's going to need one that is about a half-inch or more thick - so it will be too thick to fit in her shoe.  So, we'll probably have to get one that goes on the outside of the shoe.

Okay, that's it for now.  Just wanted to tell you about Harlie's talking!!!!  It is so fun to type that!!!  Who knew that she would be doing this now????  Crazy!!!!

Thanks,
Christy