Thank you!

We made it home just fine and the trip was uneventful, thankfully.  Well, except that Maggie had me laughing the whole way home.  She's so funny!

Before we left for Boston I went by Harlie's audiologist's office to pick up a device she ordered for us. It acts as headphones, since it is difficult to wear headphones with a hearing aid.  She wears it around her neck and a cord from it gets plugged into the place where headphones would get plugged into.  Then you turn it on, and the sound goes - wirelessly - into her hearing aid.  Pretty cool, huh?  I couldn't get it to work on the way to Boston.  But I tried again at the airport leaving Boston.  I still couldn't get it to work.  Then I tried again on the plane - she wanted to watch Sponge Bob (never give up, right?).  Finally!  I got it to work and it was AWESOME!  She loved it!  This is going to be so great for school and for watching movies in the car, etc.  YAY!  I love that device!!!

Tom picked us up and we went home and had some really good sandwiches.  You know, with deli fresh meats and crisp lettuce on really good bread?  Yum.  Then I went upstairs and got into bed and took a nice long, much needed nap.  Whew!

It's taken me a few days to get back into the groove.  I have felt so super tired - like to my core.  I made myself take a class at the gym and then I went for a run on Sunday.  Today I stayed home and went through all the kids' toys.  They seemed to be everywhere and apart and it was stressing me out.  So, today me and the boys went through all the rooms and separated the toys into throw away, keep, and give away.  And now I feel much better.

So, do you remember this picture I posted last week?

Well, it is now hanging in my living room!  Can you believe some really nice, awesome, thoughtful and anonymous person sent this to me?!  Seriously!  I am SO loved - just like the sign says!  Thank you whoever you are!!!  I love it and it looks so fitting on my living room wall.  Just like it's always been there. I LOVE IT!!!  Thank you!

This one is going to be a short one.  Still trying to get caught up.  And we're watching the Olympics.  So, I gotta go.  I have more to write and will hopefully be able to soon.

Much love!
~Christy xo

Post-op DONE!

Whew!  IT'S OVER!!! WOOHOO!!

We arrived at radiology right on time - 7:30am.  I'm only going to hit the highlights.  Because to be honest - I am beat!

After a lot of waiting and lots of questions a doctor came in to talk details.  She said that combining a non-radiology procedure (dental impressions, in our case) with a CT scan is unheard of.  She wanted me to know and understand that they were making an unprecedented exception.  In all of her 17 years here, it has never happened.  And I get that.  She said they get requests all the time to add different things to a radiology procedure to take advantage of a child being under anesthesia - but they always say no.  They have to.  Otherwise they would turn into a mini-OR and they would get so backed-up since all the machines are already booked as it is.

So, I guess this means that we're somewhat special.  For a second, I'm like, "wow, that's pretty cool." And then the reality of that sinks in, and I think, "Wow, that really sucks."

I'll try to make this simple...

She wanted to go with an anesthetic that I had never heard of (not that that means anything, really) and  can't remember what it was called now (started with a P).  The negatives were that the medicine would linger in her system for 48 hours, it would not relax her muscles like general anesthesia and that kids tend to be more agitated when they wake.

Way to sell it, Doc!

Um, no thank you!

In her defense, the reason why she wanted to go with that particular anesthesia is because it is less risky than general anesthesia.  Especially considering they didn't know her and she is a complicated kid - heart wise (and otherwise, but in that situation, her heart is the main issue).

My problems with that were:

1.  Her muscles (specifically her jaw muscles) need to relax enough that they can get the dental impressions.

2.  At that time, we had another appointment in the afternoon and then I have to put her on a plane tomorrow.

3.  She's been under general anesthesia more times than I can recall - more than 30 - and we've always been perfectly fine.  Her one risky episode was not anesthesia-related.  It was infection related.

My thinking was that it was actually more risky to NOT do general anesthesia - in the big picture, I mean.  The dental impressions were a must.  Period.  If she went under and they were unable to get them, we'd be screwed.

Not only would she have to go under general anesthesia in the very near future anyway, we'd have to rearrange our flights, and it would be a general nightmare.

Not worth it.  Especially considering I had never heard of that med before so what if she had a reaction?  Go with what you know or what you don't?

I hated to do it - but I had to put my foot down.  And I know she was annoyed.  And I can understand her view point.  She's been through many years of education, she's probably super freaking smart, she makes a ton of money and the bottom line is that she knows WAY more than me when it comes to this stuff.  And I'm a stay at home mom.

However, she does not have the big picture in mind.  And she will only have to deal with Harlie, and the  consequences of these decisions for a short time.  And, she just met her.  And I know her better than anyone should know anybody.

Maggie said that during our talk I said something and bent down to get my notebook from my bag when the doctor looked at her co-worker (I have NO idea who he was or what his position was since he did not introduce himself) and gave him this "look" like "oh brother" or something.

I know I wasn't wrong in my standing.  But it still stings to think someone looked at me and thought something not positive.  Especially when I work SO FREAKING HARD to do the BEST thing for my wonderful daughter whom I love more than life itself.  Just look at her already!

Two things really put me off -

1.  She asked me why we've spread our care all over the place (Norfolk, Richmond, DC and now Boston, MA).  To me, I think the answer is really obvious - because I freaking have to, that's why.  Same reason why I do a bunch of other crap I hate.  I can guarantee you it's not because I'm bored, have too much time on my hands or that I WANT to.  For crying old loud.  Something about the way she asked me that made me want to come out of my skin.

2.  She asked me why they want dental impressions.  Really?  Does it matter?  You just told me that combining procedures was a first in your 17 years.  Do you think it's not absolutely necessary?

After I told her I just wasn't comfortable trying a new med this visit, she left the room.

And I just need to say that doing this and standing my ground, or arguing my point, does not come easy.  You'd think it does since I am advocating for Harlie - but it doesn't.  So, if you're reading this and think you'd be all Mama Bear or something - unless you've been in these shoes, you can't say.  Doctors have this air about them.  And I would venture to say that most people think they (the docs) know better - so I really don't think arguing comes naturally.  At least it doesn't to me.  I'm a "can't we all just get along" kinda girl.

Anyway, the bottom line is that they went with general anesthesia.  And then the doc came back, she was super nice.  Maybe she thought about it and understood my point.  I made sure that I thanked her and let her know how much I appreciated her making the exception for Harlie.  Because I really do.

So, the dentist came in and got the impressions.  He came out to the waiting room to tell me that it was done.  AND THAT SHE LOST A FREAKING TOOTH!!!  UGH!

Maybe this shouldn't bother me as much as it does.  But I am SO over her losing her teeth before they are ready to come out.  Enough already!  I've officially lost count of the teeth that she has lost while in the hospital.  It really is the little things that hurt the most.  


He also said that they wanted to put some sort of retainer in her mouth post-op to help things progress - but that he thought that was unlikely.  He said her mouth is just too small.  There's simply no room in there for anything else.  Sigh.  Her jaw abnormality is severe and as much as I try to believe it's fine, it's not.  It's severe.  And that's that. 


For now.  


I still have hope we can turn things around for her. And the surgeons seem to, too.  If you have some good connections with the Man upstairs - feel free to pray!

Oh, and I can't remember why - but the doc wanted her to have an IV before she went into the CT scan room.  We originally said that they would get an IV after she was under.  They just hook up the vent with sleepy stuff to her trach and "night-night!"  I really don't know why they couldn't do the IV afterwards.  And maybe I should have argued that, too.  But, I didn't want to push my luck.

So, bring on the torture.  Thank goodness the nurse got it in one stick.  Woohoo!  Although Harlie fought like nobody's business.  She almost head-butted me and I can tell you that it would have HURT. She was really fighting hard!

The CT scan took forever.  They wanted to confirm what the surgeon wanted, so he had to be called out of surgery.  Oh!  And I got a kick out of this...

I knew that she was going to have some blood work later in the day so I told them they had to get what they needed while she had an IV.  So, they did.  Although she fights anything having to do with touching the IV.  She's insane.

After that we went to wind down for a little while till we had to go to our next appointment.  They have this garden area and there was live music and and it was really nice.  The weather was awesome.  Not too hot and sunny.

This is such a nice hospital.  I love it.

After that, we went to pre-op.  I was thinking we would be done relatively quickly.  We had already met with cardiac anesthesia (since they had to do general anesthesia) and they already took blood.  So, there wasn't much else left.  If we got out of there early enough, we were going to go back down towards the aquarium and let Harlie ride the carousel.

Boy, was I wrong!

One of the blood samples clotted, so they had to repeat it.  UGH!!!!!!!!  I made them justify that they absolutely, without a doubt, needed it today.  They seemed sympathetic.  But it still had to be done.

After all questions were answered (10 times per question at least for each specialty and department), we headed on over to the lab.  Harlie was fine until she got called back and saw "the" chair.  She knew what was going down and she was not happy about it.  She started to cry and it broke my heart.  It didn't help that I had to be the one to pick her up (against her will) and put her in my lap and then bear hug her to hold her down.

It took 5 adults.  And two attempts.  We were all sweating and the room (which was tiny) was hot as hell when we were done.  One of the nurses grabbed some paper and started fanning Harlie.  Something about her doing that touched me.  It was a very sweet gesture, and did not go unnoticed.  I HATE holding her down like that.  But I hate the thought of someone else doing it more.  In my mind I am hugging her.  Really, really tight. And I hope that she thinks that, too.

After that... we were DONE.  Hallelujah!

Of course it was after 4pm, and there was no way in hell we were going anywhere.  They have a playground there and I asked Harlie if she wanted to play on it.  She said, no.  So, we went back to the hotel.

I left Maggie and Harlie relaxing, watching tv, while I walked to the nearest liquor store.  I'm sorry, but I had to have a drink!

It is now almost 10pm and Harlie is still awake.  I don't get her at all.  She's had such a rough day.  Why isn't she sleeping????

We are almost packed.  I packed everything I can for now.  I want to go home.  And so does Harlie.  She misses her Daddy (she has signed for him everyday).

It is daunting to think that we will have to come back.  And learn a new ICU and new nurses and doctors.  And then leave.  Just to return again.  And again.  And again.

I hope that we've made the right decision and picked the right team to turn our lives around.

Okay, I have GOT to go.  I'm beat.  We have an early morning tomorrow.  Thanks for all your thoughts and prayers this week.  They were very much appreciated!!!  We couldn't survive this without your support!

Much love,
Christy xo

Pre-op Day 2

We saw four docs today.

We started with dentistry.  And that went as I expected.  They were not able to get the dental molds done.  Although I must say that Harlie was way more cooperative than I expected her to be, her mouth simply cannot open enough for them to get the mouth trays in.  They made several attempts and tried cutting the trays to fit better.  But, her mouth did not form in standard shape, so it just didn't work all around.

Taking a quick peek in there.

She even tried to get it in herself, which I think is amazing!!!
She doesn't even want to put a scoopful of yogurt in there!

Last attempt.  It just doesn't fit.

So, they are going to come to her in radiology tomorrow while she's under for her CT scan with contrast and do it then.

No surprise, really.

Since that appointment went pretty quickly, we had some time to kill before the next one.  Somehow we ended up in this open area and they were doing this role play thing they do once a month.  They gave her a hat, which she loved, and a stuffed lobster and they had stations for her take him to to be weighed, get shots, have his temperature taken, have blood drawn, etc.  It was SO cute!

We named him Claws (he even got a hospital bracelet).
He's getting his vitals taken and he was weighed.

Blood pressure time.

He got x-rays and is now getting a cast.

Harlie loved it.  They had an x-ray film there for her to touch and it was an x-ray of a teddy bear.  Adorable!

Then we headed to the cafeteria for lunch.  When we were at the aquarium the other day I found these nesting penguins.  I knew she would love them and I had a feeling they would keep her busy!

After lunch we went down to the lobby to look around the gift shop and let her look at the whatever you call this...

While in the gift shop, I had to really fight urge to buy this...

It was written for us!  Well, and a bunch of other people...  But, it was a little big and would be a royal pain in the butt getting it home.  I'm sure I can find it somewhere closer to home.

Harlie made a bee line for this toy...  so I just had to get it for her.

She got to open it when we went to our next appointment, to see Dr. Labow and Dr. Meara.  I asked her if the little girl was her and she said yes.  Then I told her to tell the little girl to be nice to her mama.  :-)

Dr. Labow and Dr. Taghinia (who we saw yesterday with Dr. Padwa) are the micro surgeons.  We just spoke a little more about what to expect, etc.  Nothing really new there.  Although his after care about her leg was slightly different.  He didn't mention a cast at all.  I meant to ask him for a little clarification, but forgot.  I'm used to hearing different info from different docs, so that's not unusual.  And I learned a long time ago that things don't always go as expected, so we'll just have to see what happens.

After Dr. Labow left, we saw Dr. Meara.  He is the plastic surgeon who is going to "fix" her left eye.  I  must say that I'm pretty darn excited about that.  He said it is going to be a big change.  I honestly can't imagine her looking any different than the way she looks now.  So, it's REALLY hard to picture what she's going to look like with her eye more "normal."  And I want it understood that I think she is so freaking cute just the way she is.  I've never wanted her face to change.  But, at the same time, I know that one of the first things other kids notice about her is her eye.  Plus, I think it has a lot more drainage issues because it is so open and exposed.  It needs to be fixed, so we might as well get it done.

He said the risk is that he is working against gravity.  So, he'll bring it up, but over time, it could go back down.  We'll just hope that doesn't happen.  Back to being excited and hopeful...

After that, we went to cardiology to see the electrophysiologist, Dr. Cecchin.  He asked me a few questions about why they set her pacemaker so low (meaning that they are letting her heart rate get pretty low before the pacemaker kicks in).  I told him it was because they wanted her heart to initiate as many beats as possible.  I think.  If I remember correctly.  Luckily he said that they weren't going to change anything today.  While I'm sure he's a fantastic doctor - I don't need anyone else in there recreating stuff.  Although he said they were going to adjust her settings for surgery.  He doesn't want it that low during/immediately after surgery.

And then we were DONE!

Even though it wasn't the busiest day we've ever had, we were BEAT!

Surgery is exactly ONE month from today.

I'll end with two more pictures.

Awww, Harlie and Maggie watching Wild Kratts.  

And I just HAD to have this hat.  It says, "Powered by Optimism."  I might need it in the coming months!

Yes, I'm a dork.

You might notice the hodge-podge of crammed furniture in the background.  And the gorgeous window treatments.  Yep.  Storage room.  Oh!  I forgot to mention that when we checked in and got our room key, the clerk said that we got her "favorite" room.  That kinda scares me.  We made a mental check not to ask her for any recommendations on places to go or eat, etc.

Okay, that's it.  Tomorrow we have to be at the hospital by 7:30am.  So, more later!

Thanks for all your love!
~Christy xo

First appointment down

More adventures in Boston...

Sunday

We took our time getting started on Sunday morning.  Once Harlie was up, she started signing "fish" -she clearly wanted to go to the aquarium.  So, off we went.  We stopped at the front desk to ask them how to get to the "T" (train).  He told us to take a right out the doors and to follow the family that just left - because that's where they were going.

Once we were on the "T" the little boy in that family said, "So, you're staying at the same hotel we are."  I told him yes.  And then he told me that he is having surgery at the Children's Hospital.  I told him Harlie was, too.  He asked why and then told me why he was having surgery.  He was eight.  It was really cute to have that conversation with him.  It made me wish Harlie could have a conversation, too. At her age, she'd be able to talk to him about it, which would be really cute.

Anyway, we took the Green line to Government Center, where we switched to the Blue line and then got off at the aquarium.  We went to go stand in line and within seconds an aquarium employee came up to me and told me that we could skip the line and go straight into the building.  What?!  So, I thanked her and we headed on in.  Totally awesome!  Then they let her in for free!  Wowza!  Things were really looking up!

We walked all through and the kids had a good time.  I don't think I'm supposed to upload a lot of photos because I'm using a wireless card or something (not tech savvy over here) so I'm going to have to post photos later.

After the aquarium, we walked over to Fanueil Hall, which was pretty cool.  They have a Crocs store and Harlie needs a new pair.  So, we went in there and she flat out REFUSED to try any shoes on.  Which is really weird because she loves her Crocs.  Which might explain why she didn't want to try any on, now that I'm thinking about it.  They didn't have the ones that she has at home (I think they are getting too small).  Interesting.  And annoying.

Anyway, after that we went on a Duck Tour, which I thought was awesome.  I know the girls didn't appreciate all that the driver was saying, but Heather and I thought it was very interesting.  And the driver was pretty funny.  After the duck was in the water, he asked if anyone wanted to drive it.  So, Mallory and Harlie got to drive it for a little bit.

We were supposed to meet up with a friend of mine from high school, but unfortunately that didn't work out.  My brain wasn't as sharp after all the walking around we did and when we were figuring out the times of when we had to be where, I messed up.  Ugh.

After the duck tour, we headed back to the T to go back to the hotel.  It was a little after 8pm by then, and the girls were worn out!

We got on the Blue line and headed towards Government Center again.  We checked the map and found "Longwood" and took the Green line that would take us there.  I have to admit that Heather and I were pretty darn proud of ourselves for all of our navigation.

By this point, it is after 9pm and it is dark outside.  So, we get off at the Longwood stop (which is an outside stop) and I immediately set up Harlie's chair and get her in it.  While I was doing that Heather said, "Christy, I don't think this is where we got on."  I stop and look around.

Chirp, chirp.  

The station is almost empty (there is one guy on the other side of the tracks waiting for a train) and the street is dark.  And Heather is right.  It is NOT where we got on the train that morning.

We look at the map and realize that there are TWO freaking Longwood stops.  One is just "Longwood" and the other is "Longwood MEDICAL."  Great.  I know exactly what we did.  We were tired.  We looked at the map, found Longwood, and stopped looking, so we never even saw that Longwood Medical was a different stop.  On a different line.  So, getting back on the train really wasn't a good option.  That would have cost us a lot of time.

We look down the street to our right.  Pitch black.  No city lights in sight.  Just a bunch of trees.  We look down the street to the left.  Exact same.

And then Mallory yells, "ARE WE LOST?"  Both of us shush her immediately.

We can see from the map that the Children's Hospital appears to be in the middle of the two Longwood stops.  So, it looks like it's not that far to walk it.  But, what are we walking through?  We didn't know the area at all.  Was it safe?

Heather pulls up the GPS on her phone and we decide to try walking for a little bit.  Within just a minute or two we got up the hill and then civilization!  Woohoo!  And we walked straight "home" to the hotel without incident.  And - just to note - it was actually a more direct and quicker route than the one the hotel staff recommended that morning.  Nice.  Thanks, a lot guys!

So, on our way back, we got to explain to Mallory why you don't shout, "ARE WE LOST??!!" in an unfamiliar place.  At night.  Mallory now knows the meaning of the word, vulnerable.  And then Heather and I were proud of ourselves once again for figuring things out.  We're awesome.

The girls fell asleep and Heather and I stayed up into the wee hours drinking wine.  Again, laughing and talking and having a blast.  Oh, and eating a bunch of cold pizza and candy.  It was a great day.

Monday

We got a really late start to Monday.  We took the T back to the aquarium area.  It was lunch time and we were hungry.  Heather wanted to try a Lobster Roll.  So, Tom found the Yankee Lobster Fish Company and said we should go there.  Unfortunately we had to take a cab.  But it was good.  And then we headed back towards Fanueil Hall (near the aquarium).  We walked along the shops and since I am pretty stubborn, too, I took Harlie back to the Crocs store to see if she was in a better mood to buy some new shoes.  Nope.

Then we headed back to the hotel for our 4pm appointment with the oral surgeon and another surgeon.

Heather's flight didn't leave till 8pm, so they went with us to our appointment.  And I think that had to have been fun for Harlie.

4pm Pre-op consult with Dr. Padwa and Dr. Taghinia

I'm going to try to brief, because it is now 11:50pm and Harlie JUST fell asleep and I am struggling to keep my eyes open.

The highlights are:

1.  I really liked both doctors.  We had a comfortable conversation with laughing (which always wins me over).

2.  Dr. Padwa (oral surgeon) thinks she might wire her mouth shut for a few weeks.  But she won't know for sure until she gets in there and sees how things look and how things go.

3.  She examined Harlie's mouth and just with a little bit of touching, Harlie gagged a little.  She is a little concerned that Harlie won't be able to tolerate getting the dental molds tomorrow.  This was my worry, too.  So, if it doesn't work tomorrow, they are going to sedate her for the CT scan on Wednesday and do it while she's sedated.

4.  Dr. Taghinia will be working with Dr. Labow to harvest the bone and vascular tissue from her fibula.  I asked if they are going to take a vertical sliver or slice from her fibula.  And he said, no.  They are going to take a section of the whole bone from the middle of her leg.  So, they are going to cut her bone in two places and take the piece from the center. I asked if they are going to replace it with anything.  And he said, "No."

WHAT?!?!

So bone will go down from her knee and will just end.  And bone will come up from her ankle and just end - without the bones touching in the middle.

Isn't that crazy?!?!

Apparently that is not a weight bearing bone and we don't really need it.  But it still seems pretty freaky to me.  I can picture those x-rays now...

5.  Her leg will be casted for a few weeks and she will not be able to bear weight.  So, that should be fun.  Have I mentioned how much I love her new stroller?

6.  Just in case you're curious (as was I) they take turns taking breaks to eat, drink, etc. during the surgery.  It will last 10 hours, give or take.  I told them I did not want them to be distracted by their hunger.  It was actually a funny conversation.

7.  After we covered all the info, Dr. Padwa asked how I was doing.  Nice, huh?

Then we left.  We stopped to get Heather and Mallory some dinner before they had to head to the airport.  Then we went back to the hotel, Heather packed and we all headed to the T station.  In the meantime, my friend from high school (Mike) was on his way to meet me for dinner.  On our way to the Longwood stop, we met up with him.  Then we had to say good-bye to Heather and Mallory.

I am so thankful for them coming up this weekend.  We all had so much fun.  And I think Harlie and Mallory got to bond a little.  They were actually very cute together.

So, then me, Harlie and Mike went to dinner.  It was great to catch up with him.  Thanks for dinner, Mike!

So, you're all caught up now.  We have to be at the hospital at 10am for our first appointment.

That's it!  More later!  Thank you!!!
~Christy

In Boston

So, we're here and it's already been somewhat of an adventure.

Yesterday I spent most of the day packing.  We got to the airport a little more than two hours before the flight.  The kids were running to the window to try and see some airplanes while I took a little break to sit down (while we were waiting for Heather and Mallory to arrive).  And I wanted to cry.  I just don't want to go.  I don't want to do any of this!  Why does it have to be like this?!  But, those thoughts get me no where.  They are how I feel, but feeling them is a waste of energy.  I have to shake it away.  I have to move forward and try to think as positively as possible.  Because we have to do this.  We have no choice.

I watched all the kids laughing and having fun running from the seats to the window and back again. Including Harlie.  She was running her own, unique little "run" (it's really more like speed walking because she keeps one foot on the floor all the time), pumping her arms, trying to keep up with them.  And laughing.  I wanted that positive energy to be contagious.

After checking in our bags, Tom and the kids went with us to the security point and we said our goodbyes.

And that's when the fun started.

I told them that Harlie has a pacemaker so she can't go through the metal detector.  And that's when progress came to a screeching halt.

Apparently there have been some recent policy changes on how to handle minors who cannot go through normal screening methods.  So, Heather and Mallory go through and they said we had to wait for someone.

We waited for what felt like forever!  Then a man came up to me and said, "Okay, Ma'am, let me tell you what's going on."  What?!  Then he told me about the policy changes and said they have to call the federal security guy and get direction from him and now he's aware of the situation and it will be a little while.

The situation?

Seriously?  So, I ask, do you have to do this for every kid with a pacemaker?  I don't remember his response.

In the meantime, Heather gets a thorough screening by security for being with us (because we had 2 cans of formula with us and that is a red flag right there).  They put on gloves and patted her down and then tested the gloves to see if there was anything bad on them.  I don't think Heather will be traveling with us again any time soon.

Finally a man came to stand beside me and he was on the phone.  He would ask me a question and then tell the person on the phone.  There also seemed to be an issue with Harlie's chair.  I call it a stroller, but it does sort of look like a wheelchair with really small wheels.  So, I told him she can walk through and I can fold the chair and put it through the conveyor belt thingy.  Anything to make this process go faster!  So, that worked. She walked through with the security guy and I went through the metal detector.  Which went off because I didn't take my bracelets off.  There was a really nice female security person who was kind of watching out for us the whole time.  So she gave me that bowl and I put them in there.  By now I was a little frazzled and felt pretty silly for not taking them off while I was standing there doing nothing.  Luckily, the airport wasn't that busy.  Mental note for future flights!  Come extra early.

So, I went through and then there more questions.  He asked for my driver's license to take a photocopy of it.  Then he asked for my cell number.  I told Heather that I would be getting a phone call later.

Then that nice security lady came up to me and handed me my bracelets.  I had totally forgot to get them!  Whew!  Thank goodness she was so nice.  You can really tell I don't travel much.

So, we go and sit down to get a little snack.  After a little while, my phone rang.  It was security.  He had another question for his report about the situation.

As far as security goes, they were all very nice and apologized for how long it took.  And the security guy who walked Harlie through told me that any time a minor can't be screened, they have to deal with it on a case-by-case basis.  When he was on the phone asking me questions, based on his response into the phone, I am sure the guy asked him if he felt good about letting us through.

I couldn't help but remember what Brandy said earlier.  I was thinking aloud about what time we had to leave to go to the airport and she said, "Christy, they say two hours early for normal people. So, you need to go even earlier."  haha!

So, the plane was fine.  Bumpy for a little while, but fine after that.  Harlie played musical chairs and switched seats a few times.  And of course she had to see the potty.  And play with the tray and the window.

Right as were landing, Mallory blurts out, "Boston is awesome!"  We hadn't even landed yet and she's never been there before.  We had to laugh, including the passengers around us.  It was pretty funny.  So, we land and go and get our baggage.  And then walk out to find our car.  Our awesome neighbor arranged this for us..

So, we hop in and start to head to the hotel.  We get about three feet when my cell phone rings.  It's a Boston area code, so Heather looks at me like, "C'mon!" Thinking it was security again.  But it was baggage claim.  Apparently I grabbed the wrong red suitcase.  Oops.  I told you I don't travel much!

So I ask the driver to stop and we jump out to get the wrong suitcase out of the back so I can exchange it.  But, the door to the storage area of the van is broken and he can't get it open.  Ugh.  He finally pushes and turns in the special way that makes it open and off I go back to baggage claim.

I apologize profusely (he was actually pretty nice about it) and grab my bag and go.  The driver puts it in the back and again, we're off to the hotel.

During our ride, Heather decides to look up the hotel on a bed bug website.  Apparently, a few months ago, they had all the beds and box springs replaced on the 7th floor.  Nice.

So, we're driving through a tunnel when all of a sudden a car starts honking it's horn and saying something to the driver.  Of course we stop talking to see what was going on.  Then the driver stops - in the middle of the tunnel!  And says the luggage door must be open.  ACK!!!

So, he jumps out, while Heather and I pray that no one slams into the back of the van, and shuts the door.  I also pray that Harlie's medical equipment or our clothes aren't a few miles back laying in the street.

We get to the hotel, which is right next door to Boston Children's Hospital and check in.  At this point, I'm a nervous wreck about this stay.  The hotel already looks a little dumpy.  We get our room key - not on the 7th floor - by the way.  Which I mention to Heather, who then says, "At least they replaced all the beds on the 7th floor."  According to the bed bug report, there was an incident in May on this floor in the room right next door!!!!

ACKKKK!

So, before anyone did anything, Heather and I inspected the beds.  They appear to be fine.  The room is clean.  Albeit run down.  But, just to get it out of my system....

There are three beds.  All in one big room.  Weird.  And there is a couch, and two chairs, all in a row - like touching each other - and none of them match.  In fact, none of the furniture matches.  Apparently we are staying in a storage room.

Heather opens the drawers to a desk and tells me that there are metal trays in it for file folders and organization.  Apparently, that desk was in the office and when some guy downstairs got a new desk, they were like, "Put it in room 422, with all the other junk."

One of the electrical sockets has lost most of it's plastic cover - so one could easily stick a finger (or several) in there.  One sliding light switch is broken.  There are three small windows with just white, grungy mini blinds on them.  This place is not nice.  Although it appears clean, so, I'm holding on to that.

But Harlie and Mallory don't see this room the same as we do.  They ran around like it was the best room ever.  Mallory jumped from the bed, to the couch, to the chair, to the chair.  It was hysterical.  So I really tried hard to look at it from their view and just roll with it.  Like I have a choice, right?  I think it just stings a little because it's so freaking expensive!!!!  And I would think that most people who stay here are staying here because of the children's hospital.  So, talk about taking advantage of people that already in the dumps, and don't have a lot of options!  Just another perk to having a medical complex child!  

So, Heather and I ordered a pizza (which they got our order wrong) and drank a bottle of wine.  And we talked and laughed till after midnight.  So, all's good again.

They are all sleeping in.  But thanks to my dear, sweet Cooper, I can no longer sleep in.  So, I thought I'd bring you up to speed with our trip so far.

I don't know what we are going to do today.  The aquarium?  A Duck tour?  Boston Commons?

We'll see...

More later!  Thanks for reading!
~Christy

Leaving for Boston soon

I had such high hopes of getting you all caught up this week.  I even started to write a few - but even since then some things have already changed.

This post is just to tell you that we leave for Boston tomorrow!  I can't believe pre-ops are already here!  And that means that surgery is just over one month away!  Crazy!  To think I started this process almost one year ago!  Whew!

My friend Heather and her daughter Mallory, are flying up with us tomorrow.  We will have an abbreviated little "girl's weekend" which should be fun.  They will leave on Monday.  And later Monday afternoon Harlie will have her first appointment with a couple of the plastic surgeons at Boston Children's Hospital.

Then Tuesday morning, my niece, Maggie, will fly up to help me with Harlie.  She is supposed to arrive around 8am and our first appointment is at 10am.  So, my fingers are crossed that everything works so she can make it before then.  The thought of having to talk to all these doctors and go through all the tests and stuff all by myself with Harlie was very overwhelming.  It is so hard to try to focus on what they are telling me when I have to also keep her entertained - especially when she has to go potty.  So, Maggie will be a huge help!

Tuesday and Wednesday are going to be long days, full of appointments.  Then we fly back home on Thursday.

I sat down to think/write down Harlie's packing list yesterday.  Man, I have to take a lot of crap with us.  I wish I had thought about it sooner - but we so should have shipped her formula to the hotel.  I have to carry a case (24 cans) of formula with me.  Ugh!  At least I won't be carrying it back.

Tom told Harlie that she gets to ride on a plane again.  She immediately pointed to the stuffed fish she got during our last trip there.  And now she keeps signing "plane."  I'm thankful she finds that fun.  For now.  We'll see how she feels about it after she has to have dental molds done.  I think I'm more worried about that process than anything else right now.  I don't know how in the world they are going to get them done with the way her mouth opens and her inexperience with food in her mouth.  I really don't see how she's going to tolerate that.  And I'm fearful of emotional scarring.  For me, not her.  Just kidding.  It's just that we've tried so hard for years to make anything associated with oral feeding as positive of an experience as possible.  And this will be far from positive.  I'm assuming, anyway.

Changing subjects for a second... Tom's sister, Kristie, and her two kids, Nathan and Tayne, stopped in Richmond for a quick hello while on their way to the beach for vacation.

It was great to see them, if only for a few minutes.  Have fun guys!

Okay, must run.  I have to get up early in the am to go to Adrenaline (must work that stress out while I can!).  Then it's time to pack, then leave.  Oddly, I'm excited.  I just want all of this behind us.  It feels like we've been going up the first hill of a roller coaster forever!  Even though it's not going to be done after this trip - at least it feels like progress.

Thanks!
Christy

We Heart Harlie event and video

So, the We heart Harlie event details...

Where to begin?

First - I want to say how awesome Lynda Reider is for offering to put on a fundraiser for us and get it organized in less than ONE month!  She did a fabulous job and I think she might have found her calling.  I can't imagine how much time she put into this thing!  I also want to thank the Daisy troop 5091 moms and daisies.  They welcomed us with open arms and jumped right in to help Lynda pull this whole thing off.  I have heard so much wonderful feedback from people who were at the event and they said they had such a great time.  All thanks to those wonderful moms!

My niece Jordan and her friends, Kayla, Tyler, and Rocky were busy at work moving tables, putting things where they needed to go and offering to do more.  Thanks guys!!  Maggie, another niece turned 20 that day and came back into town early that morning just to help with this event.  Thanks Maggie!

The event started at 8:30am.  Set-up started at 7:30.  I wanted to be there a little early.  But, of course we were a little late.  I promise I try!!!  But luckily everyone else was on time and set-up was already well underway.  As soon as I walked into the room and saw how many people were working to help, I wanted to cry.  Seriously?  How can we be so lucky as to have so many people who care about us?

I don't have pictures yet, but Sew Susan donated her time and expertise to make t-shirts for the daisy moms and a few others for the event.  That was a last minute add-on and somehow Lynda pulled it off!  Seriously, the girl gets things done!  We went with red shirts and white lettering that said "We heart Harlie."  And Susan thought that Harlie should have her own shirt.  So, she wore a white shirt, with red lettering that said "they heart ME".  How clever is that?  That was Susan's idea - and it was SO cute!!!  So, walking in to see a room full of red shirts that say We heart Harlie made me a little emotional.

We've had so many people since the event say they want a shirt of their own that we are going to make them available for order.  Again, thanks Sew Susan!!!  I'll have all the details soon.

One of the first people that arrived was a familiar face - but I just couldn't place where I knew her from.  So, I asked her how I knew her and she said Saxon shoes.  I was blown away.  First, YES!  That is exactly where I knew her from.  I have bought many a kids' shoes from there and she is usually the one that double-checks that the fit is a good one.  And she has helped me with Harlie's shoes, too.  Second, how incredibly thoughtful is it that she (and two other Saxon employees) came to the event?!  Seriously!  The whole day was like that.  It was crazy!

A Sweet Frog store opened up just a few days before the event and Lynda got them involved, too.  They sent t-shirts, stuffed animals and mascots!  They were huge!  It was great!  Well, except for Harlie who was TERRIFIED and wouldn't let me (or whoever I could pass her off to for a moment's break) put her down.

The raffles were in the cafeteria, scattered about on round tables with flower pots in the center.  And there was Zumba and Tae Kwon Do in the gym.  It was awesome to see that the Zumba class was filled with all ages - older adults to little kids.  And they were all having a great time!  I've heard from numerous people that Sylvia, the Zumba teacher was awesome.  Thank you, Sylvia!!!

After Zumba was over, Master Cho's came in to do a Tae Kwon Do instruction.  The kids looked like they were having a blast in there!  Thank you Master Cho's!

While those activities were happening in the gym, there were relay races and Adrenaline (and free play time on the playground) going on outside.  It was a beautiful day and everyone looked like they were having fun out there, too.

Then it was time for the raffles.  Everyone moved to the gym and stood around or sat on the floor.  Lynda and some other daisy moms were on stage.  I was a nervous wreck because I knew that when it was over I would have to go up on stage in front of all those people and speak.

It was emotionally exhausting!  While I wouldn't necessarily consider myself "shy" I am definitely not a mingler, either.  I was out of my comfort zone for sure.  I went up to people I didn't know and introduced myself.  And I stood up in front of a crowd of many I know and love (I think it's easier to speak in front of strangers) and tried to let them know how incredibly thankful I am.  That was not an easy task! I get emotional just thinking about it.

The only way I can think to describe it is that it is so emotionally complicated to have a fundraiser organized for your family.  I'm so thankful for the love and support of our friends, family, and strangers.  And I feel so incredibly lucky and blessed to have that kind of support.

But then I wish more than anything that it wasn't necessary at all.  I wish Harlie could be a healthy, talking, giggling, nose breathing little girl who could swim and hear and enjoy her life like her brothers and her friends.  But, I try not to think about it that way.  We are LUCKY to have her.  And we are HAPPY to have her.  Every single day.  

So, see what I mean?  I'd give anything to be the giver versus the receiver in the fundraising area.  I was talking to some wonderful moms a few weeks ago about the fundraiser and they were so excited about it's success.  One of the moms was there and said she had a great time.  Anyway, I was explaining that she's our responsibility and we are willing to go into massive debt to get her the care she needs.  And she said, "What does every woman expecting a baby pray for?  A healthy baby. You drew the card that none of us want.  We want to help you."  I love that she could speak honestly like that.  And something about that just made me feel better.

I am still working on my thank you notes from the event.  But in the meantime, please know how much we appreciate your support and giving spirit.  And I mean everyone who donated money, all the businesses that donated items, all the people who helped get the word out and get some of those businesses involved, and everyone who chose to spend their precious time with us, supporting us.  We are so thankful!

Oh, and one of the points I wanted to make in my thank you at the event (repeated *sort of* for those that had to leave early and couldn't hear it) is that it can be very lonely being the mom of a child with complex medical needs.  There are everyday "things" in my life that have had to become my normal that most mothers have never even heard of - nor had to accept, learn, deal with, etc.  So it's easy to feel lonely.  But not on this day.  Nope.  On this day we were surrounded by so many people who care - even though they might not understand, they care.  And I'm going to remember that feeling in August, when we're sitting in the OR waiting room for 10+ hours.  I'm thinking we might start to feel lonely.  So, I'll look at the video below and I'll remember that I'm really surrounded by some awesome people who love us.  So, thank you for that!

Okay, here is the slideshow of the photos that Paige Stevens Photography took (plus some other ones sent in from friends).  Thank you Paige for recording such a heartfelt occasion for us and for being a part of the raffles, too!

We Heart Harlie Video

Love,
Christy xo

Camping

On Friday June 29th, we went camping for the weekend.  My friend Jennifer has a camper at a campground off the Mattaponi River about an hour's drive from here.  We rented a one room cabin with an A/C window unit.  There is no way Harlie could handle the heat with no A/C, especially when they were calling for temps over 100 degrees.

I admit that I was stressing about the weekend.  I had not been there before and was a little nervous over what we were going to do with Harlie.  Even though we had the cabin, we couldn't hang out in there all day.  Most of our time was going to be spent outside.  And between worrying about her and having to pack, it was feeling more like work than play.  And we couldn't take Rooney!  It was going to be our first time away from him.  So, I knew that was going to be hard, too.

But, I trudged forward and made myself go because you never know unless you try.

I dropped Rooney off at a friend's house.  She has four pugs and a dalmatian.  He just blended right on in.  I thought I would cry when I left.  I didn't, but he did!  She was awesome and sent me some photos.  I missed him so much!  I mean, just look at his cute little face!

We got to the campground in the evening (maybe around 8pm?), got settled in, and visited with Jennifer and her family.  A little after dark, we took the kids back to the cabin for bedtime.  The cabin has a full-size bed, and twin bunk beds.  And we brought an air mattress for Harlie.

I can't remember now, but Jennifer called us to let us know that a storm was coming.  And she was nervous. The storm hit not long after that conversation.  We could hear the wind and it was a little scary being in that tiny little cabin without being able to see what was going on outside.  A big branch fell on the roof of the cabin and that got us scared.  There was very little protection in that cabin.  So, we moved Murphy down from the top bunk into the bottom bunk with Cooper.  Then Jennifer called again and told us we should get out of there and that everyone was getting in their cars and going to a clearing trying to get away from the trees.  By this time (it all happened very quickly) the wind was very scary and we had lost power.  So, Tom went and got the truck ready and I was going to start to get the kids up.  When he got back to the door he started yelling that we needed to hurry up.  So, I struggled to get Murphy awake and told him to go with Tom to the truck.  Then Tom came back to help me with Harlie and Cooper.  

I got Cooper and Tom got Harlie, then I realized I needed her suction machine and I wanted her hearing aid.  And as I was headed out I also grabbed her emergency bag, too.  I mean what if something crazy happened???

Then I ran and jumped in the truck, with everything in my lap, including Cooper.  I didn't even have the door shut before Tom was backing out of there.  It was pretty scary.  I think Cooper stayed pretty much asleep the whole time - which is VERY unusual.  He is not that heavy of a sleeper.  Harlie woke up and was very confused.  Murphy was definitely scared.  He said that he didn't like seeing us scared.  So, Tom said, "Murphy, we're not scared, we're concerned."

I don't know if driving to the clearing was all that much better.  If a tree fell, it would have still squished us.  We couldn't get far enough away to be out of the way.  But, for some reason, it made us feel better.  So, to lighten the mood, Tom put on some music and I took a picture.

Ahhh, memories.

After about 30-45 minutes, the storm was pretty much gone and so we headed back to the cabin to get some sleep.  Since it was a small, one-room cabin, it was still cool from the A/C that was kickin' earlier.  But, it was dark, which was fine.  We brought flashlights.  Of course we couldn't plug in Harlie's suction machine or pulse ox machine.  Both have batteries, but need to be recharged at some point.  The worst part of not having power at the campground, is that there's no power to run the well water pump, so that meant no water, either.  Ouch.    

The next morning we headed over to Jennifer's camper for breakfast.  Her husband got up super early and drove back home to get his generator, which was awesome.  So, at least the camper had power and A/C inside.  So, throughout the day, we could go inside and cool off.  For the most part, we spent the day at the beach area of the river.  Here are some of my favorite pictures from the weekend:

 

A trick that Tom learned in Turkey back in his Navy days.

Alexa, Kyleigh and Cooper

Love, love, LOVE this one!

Jennifer and I

Add caption

Murphy and Austin

We still didn't have power by Saturday night.  So, Jennifer and I took their golf cart over to the cabin to see if it was cool enough to sleep in.  It had been over 100 degrees that day, and it was HOT in there.  We didn't feel comfortable with Harlie being in that heat.  So, Jennifer said we were just going to have to sleep in the camper with them.  The camper sleeps six.  That night, it slept 11!  Jennifer was a real problem solver fitting us all in there.  It was like a puzzle.  And her husband went and got a huge thing of water and put it in the camper well so we could take showers.  We were so grateful for some clean water and A/C!

That night (Saturday) there was another storm expected.  Geez!  We all stayed in the camper that night.  Of course we had to constantly go back and forth from the cabin and the camper to go get our stuff.  It wasn't until it had started to storm again that I realized I forgot to get Harlie's formula.  Ugh!  So I asked Tom if he would run over there and grab some.  And he said, "So, let me get this straight, we're in a storm, in a camper, and you want me to go and get in a golf cart?"  Um, yes?  He waited a bit and then ran over there.

And then we left Sunday afternoon.  The power came on an hour before we left.  A huge thank you to Jennifer and Jeff for having us!  We had a great time!

I'm trying to get caught up on my blogging.  So, hopefully I'll have another post soon.

Thanks!
~Christy

New Nurse

This week is going to be nuts. Harlie starts summer school, Cooper starts summer preschool camp, Murphy still has swim team practice everyday, and we have a new nurse starting this week.  So, here's the schedule:

Harlie's summer school is Monday through Thursdays, 8-12.
Cooper's camp is Tuesday, Wednesday, Thursdays, 9-12.
Murphy's practice is Monday through Friday, 8:30-9:15, except on Tuesdays (9:15-10).

Terri is working today, so today isn't a big deal.  It's tomorrow that kinda stinks.

We have a new nurse starting this week. We met last week and she seems really nice.  I have no clue about her nursing abilities.  I am probably not a very good interviewer when it comes to nurses.  It's just so strange to have to go through the whole thing that I just want it to be over.  She came last week in the morning.  It was a busy morning (didn't have a nurse that day) so I had to get all the kids up to take them to swim practice with Murphy.  So we chatted while I moved around doing things and then I took her upstairs so I could start getting Harlie up and dressed.  Sadly, I didn't even think about what Harlie would think when she woke up and saw a stranger standing in her bedroom.  More sadly (or gladly?), she didn't even skip a beat.  I told her to say hi and she did.  Then went to the potty like it was no big deal.

I really can't complain about the number of nurses we've had.  I know a lot of moms of kids with trachs go through way more than I have.  In Harlie's five and a half years, we've had a total of five different nurses.  E will make number six.  Even though I know I'm lucky, it's still hard to introduce another person to my family. I'd give anything to be able to know what Harlie's thinking and how she feels about it.  And let her be a part of the decision.  Although to be honest, there's not much of a decision to make.  I've been asking the nursing agency for a nurse for months, and E is the first one I've met.

Luckily, we are keeping Terri one day a week.  She will work Fridays.  And I am going to talk to her today about staying on for some evenings/weekends as needed.  The only reason why we're getting this nurse is because Terri's school schedule is starting to conflict with Harlie's.

As of right now, E will start tomorrow.  The problem is that I can't just drop her and Harlie off at school and leave.  She needs to be trained.  I need to know that she knows what works/doesn't work for Harlie, how to feed her, how to communicate with her, etc.

But, as you can see from the schedule above, if I go to school with E and Harlie and stay, I can't take Cooper to preschool or Murphy to swim practice.  And I could ask for help with that, but it's Cooper first day and I want to be the one to take him.  I don't know his teacher, or where his class is.  I have paperwork to turn in and, well, I just want to be the one to take him, you know?

So, after much thought I think I came up with a solution.  I'm going to try to have E come in this afternoon for a little orientation at home.  That way I can get a lot of the care stuff (suctioning, feeding, etc.) covered.  Then, I am going to pay Terri to have her go to school with E and make sure she's okay there.  Medicaid won't pay to have one nurse orient another, so that's why I would have to pay her myself.  That allows me the peace of mind to go and run the boys around and then maybe, just maybe, have an hour all alone before I pick Cooper and Harlie up.  Which, somehow I will have to do at the exact same time.  I'm sure I can work something out with one of the schools.  Well, Harlie will have a nurse, so they can just wait for me I suppose.  But it would be a lot more convenient (logistically) if I could work something out with Cooper's school so I could pick him up last.

Seven more days of swim team and then the season is over.  That will help my schedule a lot.  Because then I can hopefully work out a way to go back to running more regularly.  The two things that help me relieve stress - running and blogging - and I've barely had time to do either.  Ugh.

Okay, must run to start this crazy day.  Wish us luck with the new nurse!

Thanks!
~Christy