Disney World

You might remember this post from last fall.  It's funny, because when I just re-read it, I actually thought we could go to Disney in February.  Hahahaha!

So, over a year later, the trip is planned, booked and is exactly two weeks from today!  Wow!

We started planning it within a few months of receiving this wonderful gift. We quickly learned that you need to plan it months and months in advance.  Tom worked with his friend, Celeste, who is a Disney planner.  After many emails back and forth, finding a place on property proved to be very difficult.  For one, we need more than just a single hotel room.  We are taking our niece, Maggie with us.  She is trained to help us take care of Harlie and she is a Disney fanatic, so it was a no brainer that she had to come.  So, three adults and three children, one of which has equipment that runs all night.  The bigger hotel rooms are very pricey.

The other issue is that we have to have a Plan B for Harlie.  We know she gets fatigued easily and quickly.  Even if it's something that she enjoys.  She knows her body and what it can do, and when it needs rest (most of the time).  Celeste did a great job talking us through things. For example, at first, we didn't think the resort where we stayed was all that important.  I mean, it's Disney, all of them are good, right?  But, she realized that when Harlie got tired and we went back to the resort, that's where we would hang out.  So, then a zero entry pool became more important.  More on why that was so important in a future post (which I've already started, so I promise it's coming).  Then the thought of hanging out in a hotel room to get a true break (hanging out in a pool with Harlie is hardly relaxing, especially without a zero entry) wasn't very appealing.

Another challenge was travel.  We were originally thinking we would stay at a resort on the monorail. But, one of the major resorts is under construction and she said that it was making the monorail kind of iffy sometimes.  She said it would be better if we had a car we could rely on when needed vs. depending on the monorail and being up the creek if it wasn't working.

In the end, there were too many obstacles.  And if you know me, you know how much I hate planning.  So, Tom found a large house just off property.  It has a heated pool, with a large wading area, which will be great for Harlie!

And we are sharing the home with friends (two families, Mike, Laura and their two girls, who we have spent spring break with the past two years and Mike, Marcy and Kaden) which made the rental home more affordable for all of us.  A win-win all around!

Once the house was booked, we purchased our plane tickets. Woohoo!  But, we still couldn't talk about it openly because we had not told the kids yet.  There were a few times that we almost slipped and said something about Disney with them in the room. I was afraid I would mess up, so I really wanted to tell them.  Plus, I wanted them to look forward to the trip.  I wanted the anticipation of the trip to be part of the fun.

So, the weekend after Halloween, we had Mike and Marcy and their son, Kaden come over for lunch.  Marcy and I made a sign, and then cut it into puzzle pieces.  Tom hid the pieces around the house, and the kids had to find them, then put them together to read the message.

Ahhh, parenting. I had this vision of how things were going to go when we told them.  My vision was awesome.  And I was SURE it would go just the way I imagined it. First, it took them longer than I thought it would for them to figure it out.  Harlie and Cooper can't read yet, so Murphy read it aloud. They all looked at us and said, "Right now?"  And we said, excitedly, "No, in 34 days!"  And they all looked VERY disappointed and exclaimed, "Awwww!"  At that point, Harlie turned around, headed to the living room, and asked if she could watch TV.

Awesome.  To us 34 days is no time.  But, to them, 34 days might as well be never.  Murphy seemed to be the most excited.  And he did hop around a bit.  It really only took a few minutes for it to sink in.  And then Tom pulled up the photos of the house we rented so they could see where they'll be staying.  That really helped.  And, of course, the Mickey ears helped, too!

And, as usual, Harlie had to put them on the dog.

Every day since, we have been counting down the days.  And the kids have been watching Disney parades on Youtube.  If their faces - from just watching the videos - are any indication, we are going to have a fantastic time.

I managed to book Harlie and Mike and Laura's girls appointments at the Bippity Boppity Bootique salon so they can be the princess of their choice.  And I booked appointments for all the boys at the Pirates League.  That's about all the pre-planning I could muster.  It's a little intimidating to see that people have already booked fast passes for rides.  And for specific times!  Seriously?  Thirty days out, you already know where you're going to be at a certain time?  I don't know about you, but I don't call that a vacation.  And with Harlie (especially now since she's sick) there's no way I can predict where and when we'll be somewhere.

So, we are going about it differently.  We are going to go with no real expectations, other than to just have fun and enjoy the experience.  We will be happy with whatever we can do. And the house and the amenities that come with the house (like a water park) will hopefully mean that no matter where we are, that we'll have fun.  We are all so excited!  I think Tom is more excited than anyone, though.  He researched the heck out of restaurants (I think this is his favorite pastime activity) and he made a reservation for an adult dinner out.  I'm pretty sure he will know the menu by heart by then.

If you ask Harlie who she wants to see while there, she says, "Mickey."  So, I just can't wait for that moment.

Of course now we are all a bit nervous because she must have caught whatever I had.  She's now sick, and has been for a week.  We took her to the doctor last Friday.  He put her on antibiotics.  And we have been giving her a lot of vest and breathing treatments throughout the day.

A week later, after her walking downstairs with no oxygen, these were her numbers...

The 73 is low even for her.  But, her spirits are good.  She's not playing - just watching a lot of TV.  So, as long as she's not miserable, I am going to think positively.  We called her doctor to let him know that she was not better.  So, he called in a different antibiotic.  So, we'll see if that one works.

The big bummer is that even if she gets better before we go, she will most likely still need to be on oxygen.  I'm hoping I'm wrong.  But, I seriously doubt that her lungs will recover 100% and be able to function completely free of oxygen support.  So, that means that we will be lugging around oxygen at Disney.  And that means that we have to have oxygen available to us while there.  Disney will not help us with this since we are not staying on property.  So, we are on our own.  I asked our supply company if they could help.  Another hiccup will be that the companies in Florida will not likely accept Virginia Medicaid. So, we'll have to pay cash for it.  But, that's okay.  I think it's worth it. ;-)

I am still not well.  It's been FOUR weeks now.  I am so tired of feeling tired and being unable to run or work out at all.  I've heard that the cough will likely linger for a while longer.  I'll deal with that. I just would like to have some energy back.  I do think my lungs actually feel a bit better now.  I got out the child's large vest that they sent for Harlie (that was too big for her) and got some vest and breathing treatments myself.

Harlie got such a kick out of seeing me go through the torture, too.  Now I understand why she resists the vest treatments.  It's pretty unsettling and uncomfortable.  But, I think they work and are much more appealing than having to go into the hospital.  And I fully believe that the vest has kept Harlie healthy.

Unfortunately, we weren't able to go meet my new niece, Maggie this weekend.  So, Tom took the boys and went to his mom's in PA.

Mandy's baby, Maggie.

I am totally bummed.  I would have loved to have held her, too!  Since that left just me and Harlie, her nurse, Dawn, came to stay with us this weekend to give me a chance to really rest.  There is no resting with kids around all the time.  So, that's been really nice.  And last night Marcy went and got soup for me, brought it to me and then walked Rooney for me!  I am so lucky to have such wonderful people in my life!

Okay, well, that's it for now.  I'm working on my next post already.  So, hopefully I'll be able to do that today.

Thank you for reading!
Much love,
~Christy xo
 

Heart Cath Report and cardiology appointment

Harlie's last heart cath was December 13, 2013.  I received the report a few weeks ago and met with her local cardiologist last week.  The number that we (okay, I) was most concerned about was the 24 with a line over it (to the left of the pink circle).  The 24 is the pressure of her Fontan.  I won't even try to describe her heart anatomy (or function) in this post (other than that her heart was formed in a mirror image - so what's normally on the left, is on the right, etc.).  I guess I could have color coded the picture before I uploaded it.  That would have made explaining it a lot easier.  Oh well.  All you really need to know is that her heart is nuts.  And, while the 24 isn't great, it isn't "the" problem.

The main problem is the circled 86, which is circled by a pink marker.

That is the percentage of oxygen in her blood as it leaves her right lung and enters her heart.  Her circulation works like this:  heart is single ventricle, so it pumps in one direction only - to her body.  Red blood (fully oxygenated) leaves her heart and goes to her body.  It returns from her body (blue, needing oxygen) and goes straight to her lungs to get oxygen.  After it gets oxygen from her lungs, it goes into her heart, to be pumped to her body again.

Since the blood comes from her lungs - fully oxygenated - her sats should be close to 100% (not 86%).  It hasn't entered her heart yet - so her heart defects should not play a part yet.  Plus, I gave her to the cath doc on oxygen.  She was on oxygen in recovery afterwards.  Does that mean that she was on oxygen during the cath?  Because if that's the case, 86 is ON oxygen, which means that it would probably be lower if she wasn't on oxygen.

So, the question is... Why are her sats so low leaving her lungs?

And that means it's not her heart.  It's her lungs.  UGH!!!  This was actually my fear before the heart cath.  I just felt like her heart was probably more "fixable" than her lungs.  If the lungs don't work, I don't think there's much you can do about it.  While her heart is jacked up, but it "works" because they did a bunch of stuff to it, you know?  Plus, all of a sudden, I felt very unprepared.  I was all ready to learn about pressures and crap, and then I had to change gears.  And wait two weeks to talk about it again.  So frustrating.

I can't remember if her cardiologist said that her pressures of 24 are an after-affect from the low sats or not.  Or maybe they are just 24, just because that's her.  I can't remember.  I suppose it doesn't matter for now.  He did say that she has early elevated Fontan pressures.  The pressures go up in time, that's normal.  He said that kids 16 years old and up have pressures in the 20s.  She's 7 and hers is 24.  But, one can live with high pressures.  So, that's not the main issue right now.

So, now we have to see her pulmonologist to see what tests we can do to find out what her lung function actually is.

For those that don't know, Harlie had a chest mass in or around her right lung.  The right lung is made up of three lobes and the left is made of two lobes.  During my pregnancy with her, they found the lung mass and it was preventing the normal growth of her right lung.  After her birth, it became a back burner item, until she was about 8 months old.  The mass was still growing and it had begun to squish her good lung, compromising its function.  So, the mass had to come out and in August of 2007 (she was 10 months old at the time) they removed two of her right lung lobes.  They were able to leave one lobe.  And after that, she did much better.  She was finally able to come off oxygen (after a full year on it) and was able to learn to sit up and crawl.  Life really took off for her after that.

But now, is that one lobe doing more harm than good?  Is it permanently damaged?  Should it be removed?

We see her pulmonologist next Thursday.  And we'll go from there.

The whole thing is frustrating.  I just wish she could get a break.   It seems we are always having to worry about a life-requiring issue (heart, lungs, airway).

Managing her care (from my perspective as her mother) has become very overwhelming.  I have moments when I am confident in my decisions and my observations.  And I have moments when I am NOT.  And in her case now, her symptoms are not black and white.  Everything is grey and open to interpretation.  What if I misinterpret something?

I try to remember the times where I feel confident in what I interpret... for example, we took Harlie to the bowling alley a few weeks ago.  It was a fundraiser for the Deep Run High School Marathon Dance.  Brandy was with us and was focusing on Harlie while I talked (as usual).  Brandy started to notice that Harlie would walk up to the ball return and stop and rest.  Then pick up the ball, and stop and rest.  Then walk - slowly - and bowl.  Then rest.  So, she made her sit down and she checked her sats.  ON oxygen, they were 76!!!  Obviously, that's a sat she just can't tolerate.

So, clearly she NEEDS the oxygen.

Did I ever tell you about her not being able to digest her food when I was experimenting with her oxygen needs?  Well, just in case I did, I'll make it short - I wanted to see if she could tolerate lower sats, without the oxygen.  Her sats seemed to hang out in the low 80s (which I didn't think was that bad) without the oxygen.  But, after a few days, her body wasn't able to process her formula and I couldn't get in all four cans in a day.  So, her body was sending oxygen to main organs (and not as much to her GI system).  So, that means she cannot tolerate low 80s sats.

You'd think I'd be confident by now.  But it's scary to have to be the one to have to notice everything and know whether that thing is important or not.

Anyway, I don't know how definitive the tests and/or any answers are going to be.  One confusing thing is that he said she needs a CT scan of her lungs.  She had one back in June of 2013.  Lucikly, here in Richmond.  So her doc was able to pull it up and read the report.  It doesn't say much other than that her lungs are in better shape than they were in 2007.  Maybe if they did another one, or had that one from June re-read, with the radiologist knowing that her sats are low leaving her lungs, that would make a difference?  At least now we know what to look for.

Her cardiologist said that we will have to let her symptoms guide us and maybe make some decisions on faith instead of hard data.  Which is how we made the decision to remove the bad lung tissue.  He was the one that said it had to come out - and from what I remember, not every doc was in agreement at the time.  Yet, that proved to be the right call.

So, that's heavy on my mind.  And again, I find myself wishing time away.  Wanting to hurry up and just get to that next appointment, that next surgery, that next... whatever.  It's really a terrible way to live.  And I wonder when we'll get to place of just... living.

Another thing that's heavy on my mind is my Mom.  A few weeks ago she found out she has a bit of breast cancer.  We're really focused on the "bit" part.  Of course I don't think that's a real, medical term.  But, I'm making it one in this case.  She is scheduled for a lumpectomy tomorrow.  So, that's a good sign.  And her surgeon said it's the kind that responds well to hormones, so that's good as far as after treatment goes.  And it did not get into any lymph nodes.  We all feel positive that this won't be that big of a deal, really.  Just a small amount of time that was uncomfortable (she had a bunch of biopsies and an MRI) and a bit scary.  As long as that time stays small, all is good!

And to end on a more positive note, I have two more funny Harlie stories for you.

The other day Harlie wanted to play on the iPad.  She signs and says "game" at the same time.  Tom told her no, and to go play with toys.  With electronics around all the time, the toys just lay around untouched more than we like.  So, Harlie was clearly disappointed and went and sat in the living room for a few minutes.  Then she said, "Daddy" and pointed to her Vest treatment machine.  He said, "Oh, you want your Vest treatment?"  This was surprising.  She never wants her treatment.  So, he was like hell yeah you can have your treatment and went and got her Vest on.  He said that the second that last buckle was buckled, she looked at him with a smirk and signed and said, "Game."

That little sneak!!!  She knows she can have her iPad while she's getting a vest treatment.  You should have seen Tom's face when he realized that he'd just been had by a seven year old!  We were so damn proud.  That girl is one smart cookie!  I realize that this behavior is something that most kids do and most parents aren't as thrilled.  But, you have a different appreciation for this kind of thinking when your kid doesn't learn to read before first grade. Or talk.  Or isn't pegged as talented and gifted at age five.

Then, the other night after I had tucked her in and went back downstairs (and JUST sat down, of course) her heated trach collar equipment started to alarm.  So, I had to go back up there to see what was the matter.  And the second I walked into her room, the alarm stopped and she sat up and said, "medicine."  So, she figured out how to get the machine to alarm, knowing that I would have to come up there.  She is something.

I have to tell you that for YEARS I have read about kids doing stuff like this (on the trach board and Facebook) and I have always wanted Harlie to be able to do that stuff, too.  Another proud moment.  Of course, as my dear friend Sarah said, cute at first, not so funny later on.  I suppose she's right about that.  But, my other kids can scream my name, or jump out of bed and come down and bug us.  This is just Harlie's way of doing that.  And she should have a way, too.

Well, that's it for now.  More later!

Much love,
Christy xo

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

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

Harlie's first day of school...

My posts are going to be out of order.  But, it's the only way I can post right now.

Over the weekend, Harlie's Vest arrived.  A nurse called me to make sure everything was in order and to schedule our training time.  On Sunday, she came over to train us.  It took over an hour.

We have to do it for twenty minutes, two times a day.  Harlie isn't a fan.  The vest inflates and then air pulses through the tubes into the vest.  It's purpose is to help move mucus from her lungs.  Hers is ordered for use all the time - not just when she's sick.  I guess if she doesn't get sick much this winter, then that means it's working.

Last night was our first time doing it on our own.  We put it on Murphy and Cooper first, just so Harlie would think it was "fun."  But, she's smarter than that.  She knows it's not fun.  I was a little nervous about this morning's routine, with the Vest added into it, since it was going to be Harlie's first day of school!  The problem is that the Vest can't be done near a tube feeding time - which was 6am. So, I had Tom give her the first half of the can at 5:30 when he left for the gym.  Then I got up at 6am to give her the rest of the can and her meds.  Then I let her rest a little while longer before I got her up and dressed.  We started the Vest treatment a little ahead of schedule, before 7am.  She gets her breathing treatment at the same time.
 

Not a fan of the 20-minute treatment.
Bribed her with the iPad.

This bad boy is NOT cheap. (like $16,000!)
It's also not light.  And we will have to take it with us
when we travel to Boston, or anywhere else.  

Of course my healthy kid asks if he can have a turn next.
And then she kicked him. Sibling love...

Despite her initial reaction when told it was a school day,
I think she was probably a little happy to be going.

We travel light.

She's going to have to use her chair for a while.  Her classroom is SO far from the parking lot!  There is no way she can walk that far in a reasonable amount of time.  Especially with her oxygen requirement.  And her questionable spinal pain.  I'm rationalizing that it will mean for more energy for her work.  But, secretly, deep down inside, it kills me that she needs it.  I never thought we'd be here when she was this age (almost 7!).

Since I didn't get to go to open house at her school, I wanted to go in the class and meet her teacher.  As we got to her classroom, the class across the hall saw her and they all said excitedly, "Harlie's here!"  I had to really choke back the tears.  Just thinking about it now makes me cry.  They all seemed genuinely happy to see her.  Her teacher said that every day they would ask her about Harlie.  I love how kids are so concerned about her and how she's doing.

In class and somewhat cooperative.

Terri said she did all her work.  She just did it at her own pace.  Which is slooooow.

Last week her teacher sent home this banner the kids made.  The kids signed their names on a heart and glued it to the banner (and her teachers, too).  It is very big and takes up most of my main wall in my office.  I love it!

And I've been meaning to show you this puzzle a group of girls made for Harlie.  It is one of those really big floor puzzles.  A friend of mine has a summer camp for girls and they did this puzzle and made some other cute stuff for Harlie.  I love all the sayings on it - Never give up, Be yourself, Just keep swimming, She leaves a little sparkle everywhere she goes, Don't worry be happy, Be unique, Spread love, etc.  So cute!

In preparation of Harlie going to school today, I made a few checklists to make sure we had everything we needed.  I got a little chuckle out of her backpack checklist.  Notice the last item... oh, yeah, that school book.

We're going to need a bigger backpack.

Seriously, when I picked her up today (half days until she builds up a little endurance) I had to carry her school stuff in my hands.  We really do need a bigger backpack.  The one she has is a kid backpack (large, but designed for a kid to wear).  But, considering we are the ones carrying it, we need to get an adult backpack this time.

I have more to write and more pictures to share, but will have to do it tomorrow.  Thank you for all the love!

~Christy xo