Thursday, October 31, 2013

Post-Op Day 1

Funny that Post-Op Day 1 is also Discharge Day.  I suppose there's a first time for everything.  

We are back at the hotel now.  And while Harlie is smiling in the following photo, she is GRUMPY.  Whew!  The swelling is getting worse.  Tomorrow should be the worst day and then it should start to get better after that.  You think I would have been prepared for that, wouldn't you?  But each time we do this, I'm always shocked.  I guess I block this part out of my memory.    



Health wise, I think she's doing well.  We took the Vest to the hospital and were able to keep her Vest treatments up, which I think helped a lot.  We can't get the incisions wet for 48 hours.  But, her hair had so much blood and goo in it that I had to wash her hair.  So, I gave her a quick bath (without getting the incisions wet) and she protested.  A lot.  I felt so bad because I so wanted to give in to her and not make her take a bath.  But, I couldn't live with her hair the way it was.  She HAS to feel better now.  Right?  

The only thing that makes me a bit nervous is that she has been bleeding a bit since we left the hospital.  I'm thinking it's from the trach collar since she's been moving around a lot more now that she's not in a hospital bed.  

So, since I forgot about the swelling, I forgot that she wouldn't be able to swallow.  Again.  Sometimes, I think we are being tortured.  We get through something so horrible, just to have to go through it all over again.  And again.  Sigh.

Anyway, as far as how the surgery went... it went well.  She said that the new bone that grew looks good.  There's no sign that the infection did any damage.  But, just to be on the safe side, they are leaving her on the antibiotics for one more week.  

So, as far as her jaw goes, we are done for now.  Her surgeon wants to see her next summer.  But, that's it.  Now to get this oxygen thing figured out... 

Anyway, here are some pictures from the last few days...

Harlie and I right before surgery.
They let me go with her into the OR.  She no longer needs Versed to help her go without being upset.  She just goes.  She cried a little bit right before we left and I asked her if she was scared and she nodded her head yes.  I just told her that it would be a quick one and that we'd be right here when she woke up.  That seemed to do the trick.  It was a quick one, so hopefully I am building up some trust with her.

I had a hard time sleeping the night before surgery.  I was so, so tired that day.  And since the Red Sox were playing that night, I knew it would be another long night.  So the second she got moved to the cardiac intensive care unit (CICU) and I saw that "bed" I jumped at the chance to close my eyes for a minute.  Or an hour and a half.


Being in the hospital will suck the life right out of you!

We brought Harlie's Vest and did her chest PT.  This was the night of the surgery and she fell asleep while getting it.  So, I guess it can't be that bad.


This was the morning of post-op day 1...
Post-op day 1
On Tuesday, we went to the aquarium.  It was great!  There was hardly anyone there so it was very comfortable.  It's the longest she's ever lasted there.  And I know it was her best time there.

Watching the sea lions and seals.
And for the first time she actually touched stuff!  Every time we've ever been it has been so crowded in the touch tank area, that Harlie didn't want to go in.  Well, this time, there was plenty of room.  And the girl could go and get things for her to touch so Harlie didn't have to move all around.  Harlie touched everything!  Some things she needed a little coaxing.  She touched an urchin, a crab, and a starfish.  And then we went to the new stingray/shark tank.  And she touched a stingray.  It was so cool to see her having such a good time.


The top of the big tank.
After the aquarium, we went and had lunch and drinks at a restaurant nearby.  Then we went to the carousel.  Harlie really seemed to enjoy it.  I loved that she loved it, but it made me sad.  All I could think about was how much I wish that her life could be more of those experiences than hospital ones.  This was surgery #40.  I think I might be getting tired of doing this to her.  I think we are all ready for a break.


The night of her surgery was the big Red Sox game in Boston.  We went to dinner and watched the game from there.  The restaurant was about three blocks from Fenway.  It was a lot of fun to be in the middle of such excitement!  Oh, life in a big city.

The bartender opened up a bottle of champagne and I took a hit right into my eye!  It was still fun, though.


The streets were packed.  They actually barricaded all around Fenway so you couldn't walk closer.  If you look in the background of the next photos you can see the building in the background with "GO SOX" in lights.  Pretty cool.



That's it for now.  We are flying home tomorrow afternoon (Friday).  I'm a little nervous about people staring at her tomorrow since it will be the worst day of the swelling and bruising.  But, we'll get through it.

Thank you so much for all your kind comments, posts, thoughts and prayers over the last few days.  It was so much fun to see all the photos on Facebook.  Thank you for taking the time to do that for us.  We are feeling the love and it is helping us stay strong.

Much love,
Christy xo

Monday, October 28, 2013

Pre-Op Day

What a long day.

We are beat.  I think Harlie fared better than we did.

Our first appointment was in Pre-Op/Admitting at 10 o'clock.  They did the basics - weight, height, temp and blood pressure.  Then we spoke to a nurse at length about Harlie's history, current status, etc.  After that, we spoke with an anesthesiologist.  She asked why we didn't do a heart cath first.  She was a little concerned about her cardiac situation.  But I explained that it doesn't work that way.  We don't have a choice.  The hardware has to come out first.  And we are here and Harlie is healthy.  I don't know what's going on with her heart and lungs - but she is NOT sick.  So, she sent us on to our next stop - admitting.  Tom handled that one while I sat with Harlie.

It was noon by this point and we had an hour till our next appointment - cardiology.  So, we went down to the cafeteria and got some lunch.  There we ran into Julie, a nurse we used to have when we were at Children's National in DC.  I saw her when we were here this summer, too.  She moved to Boston and now works here.  It really is a small world!  Anyway, it was so good to see her friendly face!

After lunch, we headed up to cardiology.  There she got an EKG, a pacemaker check and we met with her cardiologist who had us this summer.  I find him to be very easy to talk to and compassionate about her and all we have on our plate.  I brought him up to speed on what's been going on with her.

Unfortunately, the conversation wasn't great.  We won't know anything for sure until she gets this darn heart cath.  But, his thinking is that it is not likely to be a simple thing as a collateral vessel(s).  He explained why and it makes sense.  It also is in line with what her local cardiologist has said for years.  Which means that her heart may not be the cause of the oxygen requirement. That will send us back to pulmonary, which means we have to go back to the beginning.  That's where I started my questions last year.  And we never got answers.  She is just so complicated.  Her heart function - the Fontan, is less than ideal, in a kid with normal lung function.  Add her less than ideal lung function to the less than ideal Fontan function and what do you get?  Plus, he said that she could be micro aspirating, which, over time could cause lung damage.  So far, we've never seen any evidence of aspiration, but what the hell?  I suppose she could be.  Nothing about her makes sense, so why not?  But, we've done x-rays, a CT scan of her lungs in June and we are now doing Vest treatments.  I really don't know what else we can do.  Except leave Richmond for pulmonary.  Which I do NOT want to do.  But, I will, if I have to do.

But, I'm probably getting ahead of myself.  We have to take one thing at a time.  But, for now, Tom and I are feeling very heavy.  I don't want this to be a sign of something horrible.  But, the oxygen requirement for almost a full year, the struggle her body had with surgery in July, and then again in August, the addition of Lasix to her daily routine, and then an increase of Lasix every other day, means that we are going in the wrong direction.  Things are getting worse.  And there's nothing I can do to stop it.  I don't understand what's going on, and neither do her doctors.  There's absolutely no comfort in that.  And we have to wait at least SIX weeks for her heart cath!  How am I going to live with this worry for six weeks?

After that appointment, we headed over to Plastics to see her plastic surgeon, Dr. Padwa.  We didn't know how to get there from where we were.  I know how to get to Dr. Padwa's office, but I have to start from a certain place.  Anyway, we bickered about being lost, where to go, etc.  And it was very obvious that we were feeling very tired, and sad, and worried and that's just the way all that stuff comes out - being crappy to each other because there's no one else to do it to.  Luckily, we are not new at this, and we realize what's happening.  So we stop it somehow.

We went to Dr. Padwa's office and met with her.  That went well.  No heavy conversation there.  She thinks Harlie looks great.  And things are so much more improved than when we saw her last.  Harlie is swallowing and her mouth closure is much better.  They got some mouth x-rays and some pictures.  That sounds easy, but it wasn't.  Keep in mind it was well after 3 o'clock by then and we were all so tired.  And trying to get Harlie to look at us and hold still, etc. was a lot of work.  And I can't even say we were successful.  I don't know, maybe.  They said she did well, but all I can tell you is that I was done.  Then we went back towards cardiology to get chest x-rays.  We would have done it while we were right there (they are next to each other) but, we didn't have time.

Here's what she looks like underneath it all...


You can clearly see the hardware in her jaw that will be coming out on Wednesday.  Isn't it crazy?  Oh, my poor sweet little girl.  There is so much going on in her little body.  It makes me so sad sometimes.

Here is a side view...


After that we were DONE.  Luckily, her cardiologist didn't make her get another echo.  And come 4 o'clock (it's scheduled time) I was so, so thankful.  There is NO way she would have been cooperative for that.  And Tom and I did NOT have the energy to help her through it.

We left the hospital after 5 o'clock.  We walked those halls for seven hours, pushing her, and pulling her oxygen, both of us connected by tubing.  Weaving through the halls, and waiting rooms, going into restrooms and exam rooms with that oxygen in tow is exhausting.  I hate to sound like a wuss, but that oxygen changes everything.  And I'd like to think I'm somewhat physically fit and energetic.  Yet, it kicks my ass.

But, in those seven hours, we really never had to wait.  And if we did, it was for a very short time.  Our day in a nutshell:

1.   Spoke with a pre-op nurse.  Got vitals and discussed meds.
2.   Spoke with a different pre-op nurse. Went over history and discussed meds.
3.   Spoke with a pre-op anesthesiologist.  Went over current issues and discussed meds.
4.   Admitting, gave insurance info.  That was easy.
5.   Had lunch
6.   Got an EKG, completed paperwork about her meds.
7.   Got a pacemaker check
8.   Met with her cardiologist
9.   Met with her plastic surgeon
10. Got panoramic x-rays and various photos
11. Got chest x-rays
12.  Realized Tom left his cell in Plastics, so he had to go back and get it

Walking all over the hospital and then discussing Harlie's history, meds and current issues, over and over again - is EXHAUSTING.  But each specialty has to know that the information they are looking at is current and accurate.  So, I get it.  But, it's still exhausting.

Then we left the hospital and went across the street to get some coffee.  Tom went in to order and I stayed outside with Harlie.  Those are the things you have to do when you're lugging an oxygen concentrator around.  Some places are just too crowded for our wide load.  Anyway, while I was standing outside with Harlie, it took all my strength not to burst into tears.  There was a girl standing there asking everyone who walked by if they wanted to discuss the Syrian refugees.  No one wanted to, in case you were wondering.  And I couldn't help but notice that I was standing just a few feet away from her, planted in my spot, and she never asked me.  Funny.  I guess she could tell that I had enough of my own problems to worry about.  Then Tom came out and we walked back to the hotel.  Tom went and got us dinner and we ate it in our room.  Now we are waiting for the baseball game to start.

There is a lot on my mind tonight.  But, somehow we'll get through.  Harlie is happy and that's what's most important.  She was so good today.  She really is a good kid.  And I don't know how or why.  She has every reason not to be.  For now, I thank God that she doesn't understand all of this.

Thank you for all your love and support.  We are feeling it tonight, and we are so thankful.  Also, I want to thank my neighbors, Jasmine and Soloman for having the boys (including Rooney) over for a sleepover with their son on Saturday night.  And my sister, Sandy, for hanging out with them on Sunday and taking them to see a movie (coincidentally, Cloudy with a Chance of Meatballs 2).  And Brandy for staying at our house on Sunday night and getting them off to school this morning.  And, of course, Bethany for keeping the boys and Rooney this afternoon after school until Grandma and Pap Pap got there to take over for the rest of the week.  Whew!  It really does take a village...

Tomorrow is our day off and we are all looking forward to it!  Thank you again!

Much love,
Christy xo

Sunday, October 27, 2013

In Boston

It's Sunday night, and we are in the hotel in Boston.  We had a very lazy day today. And that was actually really nice.  You can't really have lazy days at home when you are surrounded by all the things that you have to do, eventually.  But, here, there's NOTHING for me to do!  Woohoo!

We left Richmond last night.  I started packing on Friday.  And then spent ALL day Saturday packing.  The thing is that when you pack medical supplies and equipment, if something gets broken, you can't just go to CVS to pick up a new one.  So, you have to pack more than one of something if you can't live without it. And now we've added The Vest to our stuff.  Tom was not happy about it since it is another heavy piece of luggage (that you can't check because it's a machine that costs $16,000).  But, I really think we are going to be thankful to have it.  Already it has helped her secretions.  After Saturday night sleeping without her normal humidification, her secretions were already thicker and stickier.  But, after a few vest treatments combined with breathing treatments, they've already turned around.

Anyway, here's the final result...



Holy luggage!  That's for three people, budgeting for a one week's stay.  And keep in mind that I budgeted that Harlie will not be needing anything from us (since she'll be in the hospital) for a couple of days.  My Mom and Dad came to our house and rode with us to the airport so they could take our car back home for us.  That will save us loads of money in parking.  Thank you Mom and Dad!

Soon after we arrived at the airport we heard from our friend, Carol, that her husband, Chris, was on our same flight to Boston.  What luck!  We had time for one beer and a lot of laughs before we had to board the plane.



Harlie took this photo...


Please keep Chris and his family in your thoughts and prayers as his mom (who lives in Boston and is fighting cancer) isn't doing well.  You might remember that Chris came to see us when we were at Boston Children's this summer.  We had to laugh that we were all flying to Boston, and all for not fun reasons.

Once we landed in Boston, Chris got us an Uber.  It's kind of like a taxi, but you order it from your phone and the cars are really nice.  I'm not sure if he specifically asked for a Suburban for us or not, but it was fitting considering all our luggage!  I tried to take a photo of Tom and Chris pushing all our luggage through the airport, but it was too blurry.  I don't know what we would have done without Chris!  Thank you for the Uber and the help, Chris!

By the time we got to the hotel and unpacked and settled in, it was late.  Harlie went to sleep and we stayed up and watched the baseball game.  Go Boston!  Hey, when in Rome!

This morning (Sunday) we slept in.  All three of us.  In fact, Harlie slept past 11 o'clock!  Seriously, what seven year old sleeps past 11am?  But we let her.  We're counting it as vacation.  As I was trying to wake Harlie (I figured 12 hours of sleep was enough, right?) I couldn't help but laugh at this...


Yes, we bring our own power strip with us.  You only have to forget that once.  Anyway, Harlie is so funny.  She is AWFUL to wake in the morning.  Seriously - mean and angry when I force her out of bed.  I send her straight to the potty.  And then she runs out with a smile, goofy and in a good mood.  She is something.  Here she is, just minutes out of bed, smiling, getting her first vest and breathing treatments of the day.


We were super lazy.  And enjoyed it.  But eventually we thought we should go somewhere and do something.  We thought about taking her to the movies to see Cloudy with a Chance of Meatballs 2.  But, after watching the trailer, and seeing how much food was involved, considering she doesn't eat any of it, I was afraid she just wouldn't get it.  I told Tom my thoughts and he said, "Now there's something you probably don't hear everyday."  I had her watch the trailer and then afterwards I said, "Harlie would you like to go see that?"  And she said, "No."  Okay, then.  That solves it.

So, we went to look for a place to eat lunch.  Maneuvering through the crowded sidewalks with her chair and the oxygen concentrator was a lot of work.  And all the restaurants looked crowded, too.  So, we went into Trader Joes and bought a few snacks (and a bottle of wine, of course) and then went to a deli for some take out sandwiches and headed back to the room for lunch.  But, the wall of the deli was screaming for some photos.





Then, later in the afternoon, Tom went to a Steelers bar that he found to watch the game.  They lost.  But he said he had fun anyway.  This is a very cool town.  Harlie and I hung out in the room, being lazy.  Enjoying our vacation.  Harlie found Tom's glasses...


She really cracks me up.

So, tomorrow we have to be at the hospital at 10 o'clock.  And we have appointments through 4 o'clock.  So, it will be a long day.  Then we'll have Tuesday off.  Not sure what we're going to do.  Might venture to the aquarium.  Since it's October, and it will be Tuesday, maybe it won't be crowded.  We'll ask Harlie and see what she says.  Then Wednesday is surgery day.  And hopefully we'll be home soon after!

That's it for today.  I will update again tomorrow night.

Thank you for all your thoughts and prayers this week!  We couldn't do this without you!

Much love,
Christy xo

Sunday, October 20, 2013

Our Friday Surprise!

Wow!  I have so much to tell you!

First, let me start with the BIG news from Friday night.

Guess where we are going...


No, I have no idea when we're going.  But, we will definitely figure it out.  And before I go any further - if you know my kids - shhhhh, they don't know yet.

A few weeks ago, Lynda (man, that woman knows no bounds!) called and said that she wanted to meet with Tom and I both to go over some We Heart Harlie things.  Okay, no prob! We scheduled it for this past Friday night.

Well, Friday proved to be a CRAZY day (will have to make that another post).  And in the midst of it, Tom called to tell me that he was invited to a soft opening of a new restaurant.  Considering his business (Tom is a kitchen designer) he really had to go.  I couldn't go with him (no nursing for the night and we had our meeting with Lynda that night).  He took our friend Mike with him instead.  So, late-ish in the afternoon I called Lynda and said that Tom had this thing to go to.  I know it sounds so crappy - we did commit to Lynda first.  But, given that he's 100% commission, he really had to take advantage of the opportunity to see if it would lead to anything.  Of course, she understood.  I told her he probably wouldn't be very late.  And she was coming over after the kids were in bed.  So, we could go over stuff that he didn't need to hear until he got home.

Lynda came over and we chatted for a bit.  She was texting a bit.  I didn't think anything of it.  Then Tom knocked on the door (Mike drove and Tom didn't have his keys).  Then less than a minute later, there was another knock on the door.  It was Mike.  Somehow it came out that Lynda sent him a text and told him to come in for a drink.  Which I did think was a little odd.  Didn't we have business to discuss?  Then just a minute or so later, there was another knock on the door.  And in walked Les and Sally.  What?

Don't get me wrong - we LOVE visitors!  So it was a pleasant surprise.  But, I couldn't help but wonder what was going on.  Plus, when we were all in the same room, I could tell something was up.  They all looked like the cat that swallowed the canary.  So, I said, "What is going on?"

Then Les got out a piece of paper and said he wanted to read it to us.

Here is what he said...

The idea for this really started with your trip to Boston, where some of us realized just how many people out there want to help make good things happen in your lives, to balance out the not so good stuff.  It is very apparent that a wide circle of your friends are not just passionate about We Heart Harlie, but are equally fervent about the Holtons as a family, including Murphy and Cooper as well.  And you two.  About four weeks ago an inspiration started a conversation, I will get to the what later, to see if we could create something miraculous, something everyone could relate to, something people would support and get behind.  And because of those factors, it has grown to be far bigger than we thought possible.

We reached out to our community, the cyclists and runners, the Daisy troop, the friends, to ask for help in creating a miracle, and the response has been frankly overwhelming.  It has been both humbling and inspiring.  We recognize that the support is because of Harlie; this kind of community spirit stems from a desire to change her life for the better.  However the thrust of this was wider, and because of the tangible nature of our objective our community rallied and then some.

So what have we done?  Over the last few weeks there has been a fund raising effort that has not only reached and exceeded our wildest dreams; it has set the stage for your family to have something that every family dreams about, the chance to make the memories that  bind father to son, sister to brother, and all of you to each other.  We started out thinking we might be able to provide the bare bones, but we now have enough to make it the trip of a lifetime, first class all the way, with no impediments to your full enjoyment of the experience.

In the box is an envelope, and in that envelope is a check, written out for you guys to have enough for an all expenses paid, seven day, Disney Orlando vacation.

The amount is not important, rest assured we have done our research and you will have on park accommodations, meals, character experiences, the works.  And that is for six of you should you want to take a nurse for Harlie.  Fly or drive, and Celeste will work with you on schedule and such (details, details) making sure there is flexibility built in to accommodate any change in plans.

Christy, Tom, we ask that you accept this gift through us from all of your friends and neighbors who desperately want to help, need to help, bring about miracles in your life for you and the kids.  We were able to raise so much because everyone could relate, they have been there as a kid, or taken their kids there, and want you guys to have that magical feeling, too.

So now you know, and might want to take a moment just to absorb this.  Reflect on how much love brought this about.

P.S. Tom, if I see you on a new road bike in the spring I will hunt you down!

~Les Carter

Isn't that just wonderful?  So beautiful, Les!  I've read it like ten times since then.  And it makes me cry each time.  Lynda got it all on video.  I'm working on trying to put it in my blog.  So, I'll share that when I get it.

This is what was in the box (which was wrapped in Mickey Mouse ears wrapping paper):


Pretty awesome!  Thank you to Celeste (who will be helping us plan this magical trip) for the box contents and to Glen Young, who provided the Mickey ears.  He said we had to have them.  Good call, Glen!

Now we just have to decide when to go, all the things we want to do while there, and how (and when) to tell the kids.  Those are the kinds of decisions I wish I could make more often!!!  What a change of pace, right?

So, any and all comments, advice, etc. are welcome!  We want to go during a less crowded time (of course).  And not hot.  Harlie has a hard time in the heat.  And my gut is telling me to go the first chance we get.  At first, I was thinking Christmas time would be AWESOME.  But, Harlie will most likely be getting a heart cath in mid-December.  More on that in another post.  And we would rather not go when she needs supplemental oxygen 24/7.  I'm thinking that would be a royal pain and would probably hinder ride enjoyment for her.  She's already limited in that area as it is.  So, it would have to be after the first of the year.  February, maybe?

Anyway, needless to say, we are blown away by this incredible gift.  Still can't believe the crazy amount of love and generosity we receive from our friends and community.  It's really quite remarkable.  It's as if we won a "friend lottery."  ;-)

There are plenty of days when I just feel sad.  And even though I don't say anything, it never fails that something good happens to make me feel better.  I'll get a nice text, phone call, comment on Facebook or my blog, or a friend will drop by the house.  I don't know how that happens, but I'm always so grateful.

Sometimes I get a little worried when I hear a lot of nice things about me.  I hope everyone knows that I am a very flawed person.  I'm spacey at times.  Those close to me might argue "most" times.  I have a very difficult time with time management.  And I forget things.  A lot of things.  And appointments.  And people.  Like Murphy.  And Cooper, too.  It's true.

Just last week I lost track of time in the library picking up something for Tom and completely forgot about being home in time for Murphy.  He rode his bike home, let himself in the garage and looked all over the house for me.  I'm not sure why the lack of my car being in the driveway wasn't a clue.  I suppose he gets that from me.  Anyway, after waiting a few minutes, he called my cell phone and when I answered he started to cry.  Thank God by that time, I was in the driveway.  But, I made my kid CRY.  He was scared and it was because I lost track of time and was on auto pilot.

Anyway, I just think you need to know that about me before we go any further in this relationship.

So, how to say thank you?  I've read on Facebook that I don't have to.  But, clearly, that's ridiculous.  No offense to all of you awesome people who said that.

So far, since fundraising for our sweet girl began, we have used the money for her medical or educational needs.  But this... to be able to use this money for her pure enjoyment - and the enjoyment of her brothers and us as a family?  Well, that's an amazing gift.  We were in no position to be able to do this on our own.  And while she qualifies for Make a Wish, we really want her to be able to choose her own wish.  And right now, she's not able to do that.  So, we are going to wait it out.  And hope that one day she will be able to communicate her wish to us.

Luckily, because of Facebook, I was able to thank most of the people that are directly responsible for this gift.  But there were some I couldn't thank.  Like a few folks that aren't on Facebook and Girl Scout Troops 5091 and 5092.  Troop 5091 is Harlie's troop and they just sold mums for Harlie.  They raised $1,600!  Isn't that amazing?  And all of that went towards the Disney trip.  So, thank you to everyone who purchased mums and thank you to all the moms who did all that work selling and delivering!  And Troop 5092 dissolved and had money left in the bank.  Instead of dividing it between the girls, the girls wanted to give it to Harlie.  So generous and thoughtful!  Thank you sweet girls!!!

All total, this wonderful group of friends and community raised $7,350!  Can you believe it?!  And there are some extra perks that will come to be in the future.  I just can't get over it.  We are simply blown away.

Now, what I really want to say is that all of you help us - in ways you'll never know.  I know we are stronger because of your incredible support and love for us.  And our children are healthier (Harlie of course) and happier (all three of them) because of it.  And we will be forever grateful.  Thank you for making a difference in the lives of others.  And thank you for choosing us to do that.

Much love,
Christy xoxo

Wednesday, October 2, 2013

Birthday recaps

First things first... I want to say thank you to everyone who commented and/or liked my last blog post.  I've heard some very kind things from so many of you and I am so appreciative.  It is funny, though.  Because I don't see that stuff about myself.  I guess that's the way it is, though.  I'm just me.  Doing what I need to do.  Most of the time.  Except when what I need to do is pay the bills or clean the house.  Anyway, thank you very much for all the love and support.  Always.

So, Harlie had a great birthday, I think.  We did something different this year.  Harlie is so hard to buy for.  She doesn't really ask for anything.  So, this year, we told her (and Cooper, since his birthday is the day after hers) that we were going to go to Toys R Us and let them pick out something.  They love going to Toys R Us, so why not make that part of their birthday celebration?

A couple of days before Harlie's birthday, she found a Tom and Jerry movie on youtube that she wanted to watch.  It was a trailer or something.  She showed it to me several times.  Through asking questions, I determined that she wanted that movie for her birthday.  Well, as amazing as some of you might think I am, I forget a lot of stuff.  And I forgot all about that movie.  So on the morning of her birthday, we all went into her room to say Happy Birthday and before she even opened her eyes, she signed "movie."  Oops.  I meant to order that movie!  Darn it.

So, I got her up and Brandy came over and we went to school.  During the drive there, she communicated to Brandy that she was going to pick that movie out when she went to the toy store.  She signed "toy" and "movie" and when Brandy asked her if she was going to get a movie at the toy store, she said yes.  Oh, I just couldn't live with that.  There is no way I was going to let her pick out a movie for her birthday selection at Toys R Us.  So, I went to Target immediately after dropping them off and luckily they had it.  Whew!

Since it was Brandy's first day at school, I went in with them and showed her around.  I went into Harlie's class with them to introduce Brandy to her teacher and as soon as Harlie went in, the students started saying, "Happy Birthday Harlie!"  It was so cute!  I love how much they try with her.  Such good kids!

That night, we packed our dinner and took it to the park for a playground picnic.

My happy, beautiful girl!
All my loves.  Pretend Tom has his eyes open.

The two birthday cuties!
Cooper's little face is so sweet!

A picture of Murphy since I feel a tad bit guilty
that I had to crop him out of the above photo.

Here's the original photo.
See why I had to crop him out?
We struggle with Murphy and his photographic issues.  I can't tell you how many times I have tried to take a good picture of him, looked at the photo I got, and then thought of this show...


It's frustrating.  But, it's funny, too.  I don't know what his deal is!

Anyway, so after the playground, we went to the toy store.  They were so excited.  I put Harlie in her chair and wheeled her around a few aisles.  No reaction until we got to the Playmobil aisle.  She took a quick scan of the wall, and in about 15 seconds, made her selection and there was NO talking her out of it.

She selected the Take Along Hospital - with an operating room!!



Just to recap... last summer when she picked something from of the gift shop at Boston Children's, she selected the hospital room.  This summer, she picked the ambulance.  And now the hospital.  My mom got her the house.  So, now she can play that she has an accident, takes the ambulance to the hospital, gets better and gets discharged back home.

It sounds funny, but I gotta tell you... when she picked the hospital, I wanted to cry right there.  I tried everything to get her to pick the zoo (which was WAY more expensive) or the camp site or something.  Anything!  It breaks my heart that that's her world.  Her life.  And what she relates to.  I guess we should start taking her to the zoo more often.

Cooper picked Legos, of course.


Since it pained me so that she selected the hospital for her gift, I let her pick out a Lego Friends set, too.  She selected the house.  And she built it ALL BY HERSELF!  I was so impressed!



I asked her that night if she had a good birthday and she nodded yes, with a huge smile.  And that totally made my day.  Nothing extravagant, but special and good, anyway.  I wish more of life could be that way.

The next day (Thursday, the 26th) was Cooper's birthday.  Five years ago, he looked like this...

He is still just as sweet.  And lovable. 

Now that's a happy, grateful face.  Mine, I mean.
Maybe his, too.
 As I was looking through some photos, I came across this one...  and I laughed for like, five minutes.


They are looking at me as if to say, "What the hell were you thinking?"  They are judging me.  And they look kinda mean.  This picture is scaring me.  Seriously, click on the picture and make it bigger.

Scary.

And this picture was taken at his soccer game on Saturday...


He brought home the class bear, Charlie.  And, of course, Charlie has a journal that we are supposed to put pictures of Charlie's "adventures" with Cooper in, and write about them.  I wish my perspective could be different.  But I find this assignment silly.  And not in a good way. I just find the whole thing superfluous.  And I don't have time in my life for superfluous.  Sometimes I consider bare minimum a success.  So I put a few pics in, wrote a few sentences (literally) and called it a day.

Anyway, we had Cooper's party that afternoon at a playground.  He was happy.  He's pretty easy to please.

Grandma and Pap Pap came to visit for the weekend.  So, they got to go to Cooper's game and his party.  On Friday night we had my family over for a small celebration.  It was a busy weekend.  But, a good one.

Now I'm focused on THIS weekend.  On Friday I am off to San Diego!!!  Can you believe it?  Just me.  I am leaving the house without a pull up, or wipes or an extra feeding tube or can of formula.  No suction machine.  No toys.  My purse will contain a wallet, a pair of sunglasses and lip gloss.  Crazy!

I am meeting some dear friends, Ann and Susan and Sarah - for the first time ever.  We all have a trached child with complicated medical conditions.  I met them in the months after Harlie was born, when I joined a trach support group on line.  Over the years we have gotten to know each other well.  And I think the world of them.  And I can't wait to meet them.  And hug them.  And drink with them.  And laugh with them.  We are staying on Coronado Island.  And I can't wait!!!

Full report next week.

Thank you again, for reading and caring.  It gets me through.

Much love,
Christy xo