Surgery Day

I wasn't able to blog yesterday (surgery day) so I'm going to write two posts today.  This one is for yesterday - July 3rd.

As I mentioned before, we were getting concerned that she was getting sick.  My gut was telling me she wasn't - that she was just adjusting to the drier air here (way less humidity than what she's used to at home).  But, I really couldn't be totally sure that it wasn't a touch of wishful thinking.  By Tuesday night, I was preparing myself for disappointment.  Not that I really want her to have this surgery.  But, I want the potential results - asap.  And there's no getting around this surgery anyway.  It is not elective.  It must be done.  So, let's just get it over with and possibly reap the rewards in a few months.   So, not getting it at this point would be a disappointment that would be difficult for me to get over.

She had an okay night.  Not a lot of suctioning.  But her oxygen saturation levels were all over the place.  And she was breathing rather hard for her.  My thought was that her body was having to work harder to maintain her sats, so she had to take more breaths per minute than typical.  She was not sick.  Hopefully.

Surgery was scheduled for 8:30, so we had to have her there at 7am.  Tom and I didn't talk much on the way there.  We were sad.  We got there and got her all checked in.  When they took us back to start the whole process of preparing her, there was a lot of discussion about how she was doing.  I told them what my thoughts were.  They listened to her lungs (clear!) and she had no fever.  Her sats were about 83 (which is kinda low for her).  But to be honest, I was pleasantly surprised they were that high.  Although low sats alone would not bother me pre-operatively.

I was not too confident in my opinion on what was going on with Harlie because I was afraid my desires were swaying my opinion.  So once anesthesia came to talk to us (and we went over everything again), they asked us how we felt about it.  I told them that I thought I was too vested emotionally, and financially in having this surgery today to be able to make the final call.  I wanted them to do it.  Luckily, they agreed with my thinking and said they felt comfortable with her having surgery.  YAY!  They said that if she were supposed to go home immediately after, no.  But, since she is going to the ICU, they can support her and give her IV antibiotics, etc.  Plus, she had the same anesthesiologist as last time, so he knew her.  Awesome!  So, it was a go!

Here Harlie is focusing on Spongebob on the iPad to get her through this.

I love that they don't make me change her clothes.  They said they could do it once she was under.  So it wasn't worth upsetting her.  Then they let me walk with her all the way into the OR and I stayed beside her until she went to sleep.  Poor kid.  I hope one day her and I will be able to have long talks about what she remembers and how she feels.

And here is the empty stroller we pushed around most of the day...

Surgery took about four hours.  Dr. Padwa came out and said that it went great.  No problems whatsoever. Just what a parent wants to hear!

Here she is about an hour post-op...

Hopefully the ice packs will help minimize the swelling.

And here she is already up and asking to watch TV.  If you look at the picture closely, you can see the metal  sticking out right under her ear.  That is what we will turn every day.  The metal is actually springy - so it's flexible.  Which has got to be more comfortable than a rod!

She slept a lot on and off, of course.  And she wouldn't pee.  She tried, but she just couldn't.  By about 9pm, they had to cath her since it had been since 6:30am since she had gone.  And that was after being loaded up with fluids in and out of the OR.

Tom and I went to dinner at a place we found last time and loved, Church.  Just a few minutes after sitting down, the manager came up to us and said, "Are you Tom and Christy, by chance?"  Then he said that dinner was on the Young family in Richmond.  Seriously?  Tom had "checked in" there on FB and BAM!  Sally was on it!  We are just overwhelmed.  All the time.   It was a wonderful dinner.  And we really enjoyed being able to sit down, relax, take a deep breath, and drink a couple glasses of wine.  So, thank you Sally and Glen!!!

After dinner we walked back to the hospital and hung out with Harlie for a little while.  At about 8:30, I asked her if she wanted to go night-night.  And she nodded her head and closed her eyes.  So we said good-night and gave her kisses and walked back to the hotel.  By that time, I was way too tired to write.  I have not gotten adequate sleep for the last four to five nights and I don't think I realized how truly tired I was.    This emotional up and down, changing gears kind of thing, can really wear you out!

Okay, so that was yesterday.  Now I will write about how she's doing today.  So, check back soon.

Oh wait! One more thing...

While we were in the waiting room, we were overwhelmed at the amount of support we were getting on Facebook!  So many pictures of people wearing their We Heart Harlie t-shirts!!  So many messages of love and support to read.  What a wonderful way to pass the time!  There's simply no way to ever tell you how much that means to us and how much it truly does help get us through the hard times.  So, thank you.

Much love,
Christy xoxo

Aquarium

Today was the aquarium day.

The center tank (which is the main attraction) just re-opened yesterday after a 10-month renovation project.  How's that for timing?  I thought it would be better to head down there around lunchtime (versus being there when they opened) since that's when most people would probably be leaving.  We took the train, which she was excited about.  But there was still a very long line.  We stood in it for about 30 seconds, when an employee came up to us and told us that we could go straight inside and purchase our tickets.  They are so awesome there.  And then, inside, they only charged us for Tom and I and not her.  Awesome.

Yes, we had hand sanitizer and used it often. After there we wanted to take her to the carousel, but it's under construction and re-opens Labor Day.

Surgery is scheduled for 8:30am, and we need to be there at 7am.  At this point, I don't know if it will happen.  We got a humidifier for the room.  The thing that kills me is that if we were home, she wouldn't get like this because I would have already upped her support.  Well, she was FINE before coming up, so maybe she caught something on the plane.  Maybe she's just dealing with the dry air.  Who knows.

We've come this far, might as well give her another night and see how she is in the morning.  I'll let them listen to her lungs, take her temp and see what they think.  I'm tired of thinking about it.

I'll let you know what happens.

Thanks for all your thoughts and prayers!
Much love,
Christy xoxo

Monday Night

We are being very lazy this morning.  Last night was not fun.  Her oxygen saturation levels were all over the place.  Within seconds they would drop from 83 to 73.  I checked the probe, because that just doesn't make any sense.  Even though she was asleep, she wasn't in a deep sleep because she wouldn't let me look at her toe (where the pulse ox probe is connected).  As soon as I would lift the cover off her foot (ever so gently) she would kick.  She is something.

For hours I laid in bed watching her pulse ox and listening to her breathe.  She is so dry!  My guess is that she's getting some mucous plugging in her lungs, which is negatively affecting her sats, since she relies on every little part of her lungs.  When one little alveoli isn't exchanging oxygen, it makes a difference.

Anyway, I gave her several breathing treatments and saline jet nebs.  But what she really needs is some major humidification.  At 1am I had to look online to see if one of the local drug stores was open so we could go buy one for the hotel room.  I think she needs something way stronger than that, but I was thinking it was worth a try.  Desperate times...

During all of this I was thinking about two things:

1.  I need to accept that she might not be able to have this surgery tomorrow.  That is so much easier said than done.  The bottom line is that I would never want to put her in harm's way, so it's simply not worth the risk.  But, we've done so much to prepare for this!  As much as I need to let things be the way they "are supposed to be" we would be very disappointed, to say the least.  I would hope that her surgeon would work her in her schedule later in the summer, and that it wouldn't put us back into NEXT summer.  Ugh.

2.  If she is really getting sick (which I really don't think is the case) we don't have what we need to support her medically, here in this hotel room.  ACK!  We don't have oxygen.  And since I am using WAY more saline bullets than I've ever used before - we are running out.  And I'm afraid I might not have packed enough suction catheters.  We never go through this many!  These are not things that your average drug store carries, either.  This is why it's so difficult to pack for her.  You have to prepare for the unexpected, and know you can't go buy what you forgot.  It's been very unsettling to think of supporting her intensely when we are not at home.  She's either been in the hospital, or home when sick.

She woke me up at 1am because her breathing was so loud and fast.  I have never heard her breathe like that before.  Which is another reason I don't think she's getting sick.  I really think she's got some plugging in her lungs and so she's having to breathe harder and faster to over compensate.  But, that is a real worry, because what happens when her body gets tired of working so hard?  And I don't want her body working this hard before this surgery (assuming she's not sick).  Which is why I would have turned on her humidification and oxygen (if we were at home) to support her.  Ugh.

Since we are running out of saline bullets, I thought we would try putting water in her nebulizer to see if it would create some humidification for her.  It definitely created a mist and she seemed to improve afterward.  So maybe that did the trick.  We are going to run this nebulizer into the ground this week.

She woke up early this morning (something she RARELY does and something she NEVER does when she's sick) and was all smiles.  She's acting completely FINE.  I am looking at everything so closely and even though I want this surgery to happen tomorrow, I really don't think I'm in denial.

I guess we will see how she does when we venture to the aquarium today.  We just have to get through one more night...

Then, I had another thought...

If she does have this surgery - I will NOT be comfortable bringing her back to this hotel room without adequate humidification and oxygen support.  And I don't know how that's going to happen.  In order to run the humidification, you need an air compressor.  It's heavy, and loud.  At home we put it down the hallway, away from our bedrooms.  And being in a hotel room, that can't happen.

So, if surgery goes as planned, we'll have to figure out something.

Never a dull moment.

Okay, must get moving.  Harlie is asking me to fix her hair, brush her teeth and get her dressed.  She doesn't exactly get that we are being lazy.

Thank you for all your thoughts and prayers!
Much love,
Christy xoxo

Pre-Op Day

Last night (Sunday) Harlie didn't have a great night.  I was up until after 1am suctioning her quite a few times and giving her breathing treatments.  Her oxygen saturation levels weren't great, but weren't terrible, either.  I felt like I was holding my breath and hoping that it wasn't the beginning of some sickness.  

As soon as I woke (um, 5:30am unfortunately) I gave her another breathing treatment.  We took a while to get moving and finally left the hotel around 8:30 or so.  Our first appointment was with cardiology at 9:30.  She just saw her cardiologist on Thursday of last week and had an echo (ultrasound of the heart) done then. But, she was very uncooperative (crying, thrashing and pushing the tech away) so the echo wasn't the best.  And crying affects the echo (the pressure causes shunting of the blood in the heart - or something like that).  So, they wanted to try again here.  

The tech here was able to spend more time doing the echo.  But probably only because Tom was with me to help me try to calm her down.  It doesn't hurt.  The tech just puts some goo on the wand and rubs it around her chest.  I guess she might have to press a little, but I'm sure it doesn't hurt.  But Harlie is now super protective of her body and very distrusting of people in hospitals.  

I assume they had the same results as the tech in Richmond on Thursday because the tech went to talk to the doc about it and they are going to go into the OR on Wednesday when she is under anesthesia and get a full echo then.  

After that, we headed over to pre-op.  While there we went over her history, meds, etc.  She was so quiet.  I know she can hear and understand a lot of what we're saying.  Tom and I talked to her a little bit last night and told her she would have surgery, but that we would get through it.  She looked sad, mad or sick in pre-op today.  So, between people we had to see, I asked her if she was mad at me.  She said no.  I told her I loved her and she didn't look at me.  And she didn't tell me back.  Ah, and so it begins.  

Then we met with someone in anesthesia.  After going over her history (again), she said that Harlie is a very complicated little girl.  Yes, we know.  But, sometimes we do forget what that means to the people who are responsible for keeping her safe and sound while the surgeons do their work.  

And I was reminded of when she had her first jaw reconstruction (June of 2008, she was almost two) and the anesthesiologist came to talk to us.  He said, "Hi Harlie!  I've been thinking about you all weekend!" I said, "Really?"  And he said, "Yes! She's got a lot going on."

Anyway, she asked us if she's ever scared us.  Yes, this is the post when she scared us.  A couple of weeks ago I was chatting with a friend who's been scared of losing her daughter, too.  Okay, all parents are "scared" of losing their kids.  I don't mean that.  What I mean here is when their lives have actually been threatened.  Anyway, she asked me what I'm afraid of with this surgery.  Such an interesting question - and one that is only asked by someone who's been there.  

So, my answer?  I'm going to be completely honest here.  I'm afraid of losing her.  I'm afraid of something going wrong.  I'm afraid that her heart will say - that's enough!  And I'm afraid of this not working.  And that's what occupies my mind - for months - before a surgery.  It feels like we've been on the up part of the roller coaster for a really long time. I'm ready to be on the other side, and have all of these worries behind me.  Then I can focus on her recovery - and making her feel better and happy.  And I would MUCH rather focus on those things.  I have feared Harlie's death long before she was even born.  I suppose that I always will.  It sucks.  And it's NOT the way it should be.  But, I am grateful.  And I will never take her for granted.  Ever.  Considering her prognosis prenatally, every day is a bonus.  I would just like there to be MANY more days.  Like years and years and years of them.  

Okay, enough seriousness...

Harlie was doing a lot of coughing during these appointments.  And she needed lots of suctioning.  And she looked like she felt bad.  Her head was bent down.  She wouldn't answer any questions.  The anesthesiologist asked us if she was sick.  Um, no?  Not yet?  They checked her sats and they were 89.  Whew!  That's great!  And she listened to her lungs - sounded great.  So, she's officially been cleared for surgery.  For now...  Of course they will check her again Wednesday morning. 

We've definitely been worried about her today.  But, the air is different up here (less humid).  So that could explain the stickiness of her secretions.  And she keeps taking off her HME (humidifies the air she breathes), so that doesn't help.  Fingers crossed it's just that.

On our way out of pre-op I asked Harlie if she knew that she was going to have surgery.  She nodded.  Then I asked her if she was scared.  She nodded again.  She really does break my heart.  And I can speak from experience when I say that it really does get harder the older she gets.  I saw a young teen in the pre-op waiting room.  She appeared to have Goldenhar Syndrome, too.  And it made me wonder when it will ever end.  When will she be free from surgeries?  Ugh.  We definitely left there with heavy hearts.  

Our next appointment wasn't until 2:30, with the surgeon.  On our way out of the hospital, Harlie wanted to look at the ball machine in the lobby. 

After a while of standing there, I asked her if she wanted to go to the gift shop.  If it didn't make her feel better, maybe it would help me.  So I told her she could pick out one thing.  But, to be honest, I would have gotten her anything she wanted if it would make things better.  She picked out a Playmobil set.  

Then we walked over to the Squealing Pig for lunch, a favorite from our previous stays.  And we were spoiled, yet again.  Lynda, the creator and organizer of We Heart Harlie had a gift certificate waiting there for us.  Thank you!

Here's to you, Lynda!

Blueberry beer.  Yum!

We ate and drank and Harlie played with her new Playmobil set.  With Tom's help, of course.  She loves it.  It pumps water.  Right up her alley.  

Then we headed back to the hospital for our 2:30 appointment with Dr. Padwa.  

As those close to me know, I have been dreading this surgery and recovery for months!  Well, I am THRILLED to tell you that it might not be nearly as bad as I thought it would be.  

Here's the gist...

The goal is to move her jaw forward 25 mm (which is 1 inch).  The distraction device company then fabricates the device to do that.  So, she feels pretty confident that it will work.  Has she had some that didn't work?  Yes.  But, she's pretty confident that it will work for Harlie.  

And for those of you who don't already know - the surgeon will cut her jaw on both sides then attach this distraction thing on both sides of the break.  Where the bone is cut, it will heal and grow new bone.  Each day, we turn the screws and it essentially re-breaks the bone, promoting more bone growth.  These are my words here, not hers.  

Here's what I expected the device to look like...

  

Or this...

But I was wrong.  And I have never been more happy to be wrong in my whole life.  

Dr. Padwa is using a device that goes under her skin!!!  You'll barely see it.  She will try to use her current scars for the incision so she doesn't make new ones.  And the screw part that we will turn is the only part that will stick out.  And that will be almost behind her ears.  Can you believe it?  

And I thought we would turn the screws for six weeks.  But we will only turn them for about a month.  Awesome.  They expect it to grow at a rate of 1 mm per day, so we will basically plan on turning the screws for about 25 days.  

I also thought we would be inpatient for at least a few days.  I mean, you never know with Harlie.  And today, she said the same thing.  But, as long as Harlie's heart and lungs stay healthy - she will only spend one or two nights in the hospital!!!  CRAZY!  

We will then be discharged, but we will need to stay here in town.  Because she will need to see her again in a week.  She said she likes to see her patients two times per week during the distraction period (those 25+/- days).  But, I can't be flying her up here two times a week.  Well, I don't want to fly her up here two times a week.  I will if that gives us the best chance for successful results.  But, she said she knows a doctor in Northern VA who did his residency under her last year.  She said he has seen enough of these that she trusts that he could see her if that makes things better for us.  So, she's going to see if she can set something up.  

We also talked about me taking pictures of Harlie's mouth and teeth and sending them to her.  She might be able to see what she needs to see that way.  She said she just looks to make sure that the jaw is moving forward.  

So, we'll play that whole thing by ear.  

After the 25 or so days, we will return to have her remove the screw part that will be sticking out of her skin.  But, she will leave in the rest of the distraction device.  The longer that stays in place, the better.  So, I think she said that will stay in for about three months or so.  So, we'll have to return again in the fall sometime to have that removed.  

Whew!  Are you tired of reading about this yet?

It's definitely a better situation than I was expecting.  But, it's also a lot more travel than I expected.  I'll take it, though!

As I've said before - there are no guarantees.  She can't promise us anything.  The unknowns are:

1.  We're dealing with abnormal bone and structure.  There's no guarantee it's going to do what we want it to do.  Dr. Padwa had some 3-dimensional print outs of her jaw that showed what her structure looks like now (with the bone from her leg) and how to place the device.  It's crazy.  They are going to give me the print outs on Wednesday and I'll post them so you can see.  

2.  There are no good studies that can show what is going on in your airway while you sleep.  Of course there are sleep studies - but you can't actually see what's going on in there!  We know there is an upper airway obstruction.  And we know it's in the area of the base of her tongue.  So, that's the area we try to make better.  She said that doesn't mean that there aren't other obstructions that we don't know about.  I really think this is more of a disclaimer.  We're just going to move forward and hope for the best.  And I'm not going to worry about those other things until they come up.  

So, all in all, I think the recovery is going to be WAY better than I thought.  She said she will have some pain and we'll work to keep her comfortable.  

Then they took some pictures of her and we left.  

We walked back to the hotel and stopped by Trader Joes, which is right across the street.  We got some wine and some fruit.  Then Harlie signed "night night."  And it was about 4pm or so?  No where near her bedtime.  

The second we got into our hotel room - she perked right up.  She was right back to her wild self jumping on the bed and being goofy.  All smiles and silliness.

That little sneak!  

So, either your prayers worked and she's really better.  Or her mood is drastically affected by being in the hospital.  

Crazy.  

Oh!  And one of the nurses today told us that the New England Aquarium's main tank has been under construction for months.  And they just re-opened!!!  See, we are so lucky!  I don't know if they replaced the tank or just fixed it.  But they did lower the railings around it so smaller kids could see over it.  Awesome!  So we are going to take her there tomorrow.  

Okay, I have been working on this forever.  I would like to go enjoy my wine and quiet time with Tom.  So, I am signing off.  Please know that even though we feel so sad sometimes, life has a way of giving us something to be happy about.  So, somehow we just bounce back.  

Thank you so much for all your thoughts and prayers!  We are feeling the love!  And we are so grateful!

~Christy xoxo

Thursday, continued...

Okay, I was rushed when I was writing that last post.

One thing that struck me about most of my Thursday is how lucky I am.  I hear a lot of nice things about how I keep it together and that I do a good job.  But, really, I am lucky a lot.  Some times things just go the way they are supposed to - despite my efforts to force it a different way.

And it was a good day to illustrate the emotional roller coaster that is the life of raising a child with special needs.

I was SAD (and crying, something I rarely do) by 9 freaking am.  And just a few minutes later, I was THRILLED to hear that I shouldn't have taken her to that appointment anyway.  Then I was happy for a couple of hours.  Then when Terri reminded me of our next appointment, I was so relieved she reminded me!  Can you imagine if we totally forgot?  Then I panicked.  There was no way I was going to make it in time!  Then I was thrilled that I got lucky, yet again, that the appointment time had changed (that never happens)!

Not to mention that I'm already on emotional overdrive with this surgery (and at the time, the trip up here) totally on my mind.

We got home right at 3pm and Terri had to leave.  But I had some other errands to run.  So, I put the kids back in the car and we went back to the pediatrician's office to pick up more scripts I forgot.  With ADD meds you have to go and pick up a script each month and take it to the pharmacy.  Of course I totally forgot to get them when we were there earlier.  But, on a positive note, they are now on the same schedule.  So, that takes out one trip each month.

By the time all was done, it was late in the afternoon and I still had not packed the boy's stuff for their trip the next day.  On Friday morning Tom was driving them halfway to Pittsburgh to meet his Mom and Cal so they could take the boys home with them for the next week or so.

It was a hectic day!  I was looking SO forward to going out with some friends that night for some laughs and drinks.  We were supposed to meet at 7:30.  But, by the time I got the boys all packed up, it was 7pm and I was no where near ready.  So, I was about an hour (or so) late getting there.  Fitting for the day, I think.

The bottom line is that I have too much crap crammed in my day.  And the kicker is that 80-90% of it - most of the time - is crap I don't want to do.  But Harlie is worth it.  And she makes me happy, despite how miserable our schedules can be.

Anyway, I had a GREAT time out with my girl friends.

From left: Me, Lyndsey, Lynda, Bethany, Brandy and Mary Ruth

After, ahem, a few drinks, we actually danced.  I haven't danced in years.  We had a blast.  I keep looking at this picture, and smiling.  Another example of why I feel so lucky. I am so loved, by some wonderful people. Thank you so much for a great night, and great memories!

So, that was Thursday.

Friday was okay.  I wasn't feeling 100% well (not surprised, are you?)  So, it was a bit of a struggle.  At almost 11am, Tom came home and loaded up the boys to meet his mom.  I was definitely not looking forward to saying goodbye.  As much as they drive me crazy, I don't want to be away from them.  And Cooper seems to love me so much.  How's he going to survive without me?  He's only four!  But, they were SO freaking excited to go that I couldn't be but so sad.  Two nights without them in the house.  Weird.

Tom had a date night planned for that night.

I don't talk much about how much of a strain stress can be on our marriage.  We are happy, most of the time.  But this week was hell.  Seriously.  Monday night was Murphy's swim meet (we were both out, but not together).  Tuesday night I had my hair cut (I was gone).  Wednesday night was our special needs sibling night (I take Murphy to meet some other special moms and their kids who have special needs siblings, so I was gone).  Thursday night was girl's night (I was gone again).  So, we saw each other very little.  And that just makes it worse.

Plus we are in the middle of renovating our old playroom into my new office!  Woohoo!  We took out the carpet and had hardwoods installed.  Tom went and picked up the hardwood material and let it acclimate for a few days.  The installer was scheduled for Tuesday, I think.  Then Tom pulled out a piece of wood and saw that it wasn't the right material.  Of course.  So, he had to reload it in his truck and return it.  Then order the correct material.  Then bring it home, unload it and let it acclimate for a few days.  So, it was finally installed on Friday and Saturday.  And wouldn't you know that he ran out of wood before he could finish?  Just six more pieces is all we need.  Figures.

Anyway, back to what I was saying - it's just been a stressful week.  We are both super busy and we are both dealing with the anticipation of this surgery in our own way.  And our ways are different.  Mine is better, of course.  Just kidding.

So, we desperately needed some alone time so we could talk without getting angry with one another - before coming up for this hospital stay.

Tom surprised me by scheduling a couple's massage.  No doubt we were due for some relaxing!  Then we went to dinner at a Vietnamese restaurant.  It was so good!  And we were getting along great - we even got to walk the dog together when we got home.

Saturday came and Tom had his last bike ride before his big race on July 6th.  I don't know if I've mentioned it, but Tom is biking 200 miles on July 6th.  Two hundred miles!!!  Isn't that crazy?  It will take him ALL day (and into the night I'm guessing).  I am SO glad that his training is DONE.  Training on a bike is WAY more time consuming than training for a marathon.  It has not been easy the past six months.  I am looking forward to a less strenuous summer riding schedule.  With more running for me, I hope!

Even though we had our date night the night before, we didn't discuss Saturday's schedule.  Clearly, we both had visions of how the day would go.  Unfortunately, they were very different.  My younger brother and his girlfriend were having the family over to their house for crabs at noon.  Tom couldn't even go with us.  I tried VERY hard to get there close to noon.  I promise.  But Harlie was high maintenance that morning and I was alone with her, while still having to go to the bank and back to freaking CVS (I go there WAY too often for my liking).  Plus there was some other stuff I had to do (like start the laundry - I still had to pack for us to leave the next day).  And I had to get some stuff for the cookout at the grocery store.

So, again, despite working my guts out, we showed up at 1:30.  And we had another party to go to that started at 2pm.  Clearly, our day was going to be off.  Typical.  Except I still had four loads of laundry and I had to pack!  Ugh.

After that party, I went home and picked up Tom and we headed to Brandy's party.  I think we got there a little after 3:30.  We were having so much fun, that we ended up staying till 8pm or so.  ACK!

So I did laundry till 1am.  And Sunday morning was a mad dash to get out of the door.  It was awful.  But, somehow, we got it done (for the most part).  We left some things.  And we had to scale back a bit because everything wouldn't fit in our luggage.  I've now determined that we need one more large suitcase.  We do have to do this all over again in August sometime.  And then a few months after that, I'm guessing.  It's not worth the stress of having to decide what you can live with or without when you're packing for a special needs child.  I mean, we had to pack almost a case of formula for crying out loud!

Anyway, we were stressed leaving the house.  And we didn't have time to take Rooney to Brandy's house (she's keeping him for us) so we packed his stuff and she said she would come and get him.  Leaving him behind was brutal.  He just looked at me with his big sad eyes and he tried so hard to get me to play with him.  I couldn't help it, but I cried all the way to the airport.  He is so healing for me every day.  I hate that I won't get that until I get home and I don't even know when that will be!

So, after we got through security, we went to sit down to eat.  Tom ordered a turkey sandwich and I ordered a mozzarella/tomato sandwich.  To tell you the truth, I wasn't really hungry.  I've been more nervous than usual this time around, so eating wasn't sounding so good.  The waitress comes to get our drink order and brings us our beers.  She said she was coming right back for our food order.  She never returned.  So, Tom went to the bar to order.

Just a few minutes later, she brought out Tom's sandwich, but she held it up at the bar, and said, "turkey!" instead of bringing it to our table.  Weird.  So, Tom got up to get it and asked about my sandwich and she said, "She already ate it."  What?  So, Tom brought his sandwich to the table.  And a couple at the bar said that when they ordered a turkey sandwich - just a few minutes prior - the same waitress said, "We haven't had turkey in years."  What?  Clearly, this waitress has a problem.

So, we share the turkey sandwich.  It was pretty apparent that I was never going to get my sandwich.  Luckily one of the other employees called for some management and he had to take care of some messed up checks.  Tom said a guy at the bar who ordered one beer paid for our order.  Tom went to pay our bill and told the guy that the waitress is confused.  And he said, "Oh yeah! She has full on dementia!  Sadly, it came on very suddenly."

Then we got on the plane.  And flew to Boston.  The second we landed in Boston, I felt better.  At least some of the stressors are behind us (saying goodbye, packing, traveling, etc.) and now we can start to focus on just being here.

Our wonderful neighbor, John Hudson, has again taken care of our hotel bill for us.  He got us a room at the Marriot in Coolidge Corner.  It is a wonderful area!  And we had fun taking a walk and just looking around. By the time we checked into our hotel (around 3, I think) I was starving!  So we went to a great pizza place for an early dinner.  Then after we let Harlie play in the room for a little while, we took another walk and got some frozen yogurt for dessert.

Tomorrow we have appointments at the hospital with cardiology (9:30), pre-op (11ish) and our surgeon (2:30).  So, it will be a long day.  Then Tuesday is our day off and we are going to take Harlie to the aquarium and where ever else the day takes us.  Then Wednesday is surgery day.  And thinking about it makes my stomach sink.

It is now late, and this post is long enough.  Thank you for being there for us.  Thank you for reading this.  It really helps me.  And I appreciate it.

Much love,
Christy xo

My Thursday...

At 7:30am, I went to wake Harlie for her dentist appointment and her eyes are glued shut.  I know what that means - pink eye.  No problem.  That's easy.  Drops and that doesn't lead to respiratory stuff.  We're good!!!

Clean her eyes with a warm washcloth a few times and get her up.  I called Brandy to tell her we shouldn't do something together today because she probably doesn't want her daughter to get pink eye.  While talking to her, Harlie brings me baby powder.  Sometimes she wants me to put it on her, um, area, if you know what I mean.  Since I was on the phone, she didn't exactly have my 100% attention.  I take the bottle, squirt a little on and go back to doing whatever I was doing.  Next thing I know, Harlie comes to me upset, points to her area and signs "hurt."  I look at the powder more closely and realize it's medicated powder with cooling stuff.  Oh no.  I put her on the potty and pour water over her and ask her if it's better.  No, it wasn't.  I do that a few times, but that's not working.  So I had to put her in the bath tub.  That did the trick.  But, this whole thing has cost us valuable time.

I asked her if she wanted to go to the dentist and she said yes.  You  might remember what happened the last time we went to the dentist.  So I told her we had to hurry.  Which, for her, she did.  By the time I got her in the car it was 8:30am and that is when my appointment was.  So, I called the dentist to let them know I was running 15 to 20 minutes late.

Big mistake.  Or so I thought at the time.

The receptionist told me that they were going to have to reschedule her.  What?!  I was in shock.  I explained that we didn't have time to reschedule because she was having jaw distraction surgery next week and we are leaving on Sunday.  She actually said, "Okay!"  And fully expected that to be that, end of conversation.

Now, I get it.  It was MY mistake.  Our life is crazy, and I rarely get anywhere on time.  If you only knew how hard I try!  But, still!  Can't they work with me?  So, I ask her to please just check with the dentist, to be sure.  She returns to the phone and says, "Dr. Bortell said she would be happy to accommodate you if someone cancels."  Seriously?  She might have thought that was polite, but I certainly didn't hear it that way. I then tell her that probably isn't going to work because she has an appointment with her cardiologist in the afternoon.  She does NOT care.  I hang up.

After a few minutes I remember that I waited in Dr. Bortell's waiting room for OVER AN HOUR just a few weeks ago.  So, how is it that I can't be 15 to 20 minutes late?  That doesn't seem right to me.  And then I thought of how much time I have spent waiting for doctors in waiting rooms in the last seven years of my life.  Then I started to get a little sad.  Sometimes, I just can't believe this is our life.

So, I turn the car around and go back home.  I get Harlie in the house and I can feel like I'm going to cry.  So I go upstairs and call her pediatrician to see if they can see her for her pink eye.  After that my friend Jennifer happened to call.  And as soon as she asked me what was going on, I started to cry.  I don't cry often.  Thank goodness.   I mean, who likes to do that?  But, in this case, I just couldn't help it.  I just don't understand why everything has to be so hard.

Jennifer said she didn't know.  But, it's true.  Everything is really hard for us.  Then she said that if it meant anything, we've been doing a great job and that if she were me, she would have been in the loony bin a long time ago.  At least my friends get my sense of humor.  And I can laugh.  Even when I cry.

So, I hang up with her and I put Harlie right back in the car and go to see her ped.  When we pulled in the parking lot, she said, "Mama! and then pointed to her teeth.  I took a deep breath and told her that the dentist couldn't see her today.  She seemed okay and didn't "say" anything else about it.  I would give anything to have a conversation with her.

Anyway, her doc and I chat.  I mention the dentist thing.  And he reminded me that she needs a prophylactic (preventive antibiotics) before any dental work because of her heart defects.  He said that he thought I should steer clear from any dental work before major oral surgery.  He said that would be asking for trouble.  Thank you Dr. Derco!!  He totally turned my day around!

I left there and went to CVS to get her pink eye prescription filled.  Then we went home.

In my ever quest to do something fun with the kids this week, Terri and I loaded them all in the car and went to the bank.  We have been meaning to take Murphy's piggy bank money to the bank to get cash for him to be able to deposit and/or spend.  Murphy had fun putting the coins in the machine.  While doing that we found a bag of gift cards that he had not used yet.  Awesome!

After that, we went to Toys R Us so he could use his gift cards and some of his own money to buy something he wanted.  I told the kids they could each pick out one thing.  Murphy and Cooper left with one thing each and Harlie left with three.  Ugh.  I promise I don't mean it.  But, I think the boys know how I feel sometimes.  They didn't say ONE word about it.  They were all happy and that's all that matters.

We spent some time walking around in there.  Murphy had no trouble making his selection.  He knew exactly what he wanted - a Stars Wars Lego set.  Cooper choose a Lego Chima Hero Factory guy.  Harlie picked a Boo doll (the girl from Monsters, Inc.) and a Lalaloopsy set that was a girl "patient" and her pet, complete with a stethoscope and medicine and a cast for their legs.  It's actually really cute.  And another little Monsters University thing that came with the purchase of the Boo doll.  She has only played with the Lalaloopsy set, so I'm going to take the Boo doll back.  She's still in her box.

It was 12:15 when we left Toys R Us.  So, we went to Chick-fil-A to get lunch.  The place was so busy you couldn't get in the drive through without blocking traffic.  So I parked and left Terri in the car with the kids.  When the guy brought out my food, it was pretty obvious I couldn't carry it all.  He immediately offered to walk it to my car for me.  Can you believe that?  I told him I was pretty far away, but he said that was fine.  He was super nice.

So, I get in my car and start driving home.  And Terri looks at the clock - it is now 12:36 - and says, "You have a doctor's appointment in less than an hour!"  ACK!!!  I already completely forgot about the cardiology appointment!  I am such a space cadet sometimes.  The appointment was originally for 1pm, but the office called back later to say they had to move it to 1:30.  Whew!  Good thing!

We rush home and try to eat quickly.  And I spend 30 minutes trying to open Harlie's Lalaloopsy package.  Grrrrr!  And Jennifer calls again to ask me what I'm doing around 3:45.  Can you believe that she called her kid's dentist and got Harlie an appoinment for 3:45?  Sometimes I'm overwhelmed by how good my friends are to me.  She said that she felt so bad for me earlier and she had to do something to help.  But I told her that we couldn't do it after all.  BUT, I am totally switching to her dentist.  I cannot go back to ours again.  

By the time we turn around and get back in the car, it is freaking 1:30!!!!  I've done it AGAIN!  So, I take a risk, and call the office to let them know.  Despite my earlier "lesson" with the dentist, I think it's still right to call and let them know.  I got the same person I made the appointment with the day before.  She said, "You are good!  Your appointment is for 1:45.  Didn't you get my message?"  I could have sworn she said 1:30 (so did Terri) but I will take that stroke of good luck for sure!  So, now I was ON TIME!!!  Woohoo!!!

Everything was fine there.  It was a funny appointment.  I love her cardiologist.  He offers me great advice in many areas of Harlie's issues.

But, I have to stop there.  We are now in Boston and we are going for a walk.  I will try to blog again tonight, if I'm not too tired.  It's been another long day, of course.

Thank you for reading!
~Christy xo

Ever changing schedules...

So, after much consideration, we've decided that a trip to Chuck E. Cheeses is out of the question.  Sometimes I just want to be normal.  I wish I didn't have to consider such great consequences to typical activities.  It sucks.  But going to a place where many kids frequent is just too risky.

Today's fun activity?  Didn't happen.  It ended up being a rather crazy day.  I took Murphy to swim practice and while he was swimming I went for a walk/run.  It was great.  It was hard, and that part wasn't fun.  But, it was great to be able to walk/run and not have back pain.  It was super hot and my legs felt like lead.  But I did it.  

My contact in Boston called today.  She's been so helpful.  The first time we spoke she told me that all the pre-authorizations have been taken care of.  Awesome.  And she mentioned something about medical reports from the last visits to Harlie's cardiologist and pulmonologist.  Well, she last saw her cardiologist last June, which was before her last jaw surgery, so they already have those reports.  But, she called later in the day to tell me that they want her to see her cardiologist again, before she has surgery.  We leave on Sunday. Today is Wednesday.  That gives us two days.  Hmmm.  It'll take a miracle.

So, I call her cardiologist's office and can you believe that she now has an appointment for tomorrow afternoon?  Wow.

So tomorrow Harlie has a dentist appointment in the morning and a cardiology appointment in the afternoon. There's your fun, kids!

Right now, I have too serious of thoughts on my mind to be a fun mom.  It's hard to let all the responsibilities go to let loose.  Especially when you have to worry about germs and her getting sick right before the big day.  I wish I had thought of this sooner.  But the perfect thing for her would be one of those inflatable water slides.  We could put it in our driveway and the kids could have fun without germ worries.  And she could play for five minutes or two hours - whatever she was up to.  Darn it.

Okay, that's it for tonight.
Thanks!
Christy xo