Surgery, take 1.

So, another long break between posts.  So sorry.  I wish I could say the long breaks mean we are way too busy having fun.  While we do try to have fun at every opportunity, it is just that life has been so busy with... stuff.  

I'll just focus today's update on Harlie, medically.  

The day after my last post (over two months ago!) Harlie developed a growth of some sort in front of her right ear.  I sent a text with a photo of it to Dr. Strauss (the plastic surgeon here locally).  He said he needed to see her.  So, we went to see him that afternoon.  He poked it and tried to get a culture.  He didn't know what it was.  This growth has a mind of it's own - it bleeds, drains some kind of fluid, swells, peels, turns red, turns black, etc. And it changes so fast. I took a picture of it at 4pm one day and by 7pm it looked completely different. Watching it has been an absolute ball. And the wound care? So fun! 

She has not been able to wear her hearing aid on her right side since her surgery in April. This has been a total drag. And I hate to complain about how my daughter's hearing loss affects me/us.  But, well, that's life, folks, so I'm doing it! 

Her in-the-ear hearing aid (versus her BAHA on the other side) connects to her tablet via blue tooth, so she can turn up the volume on her tablet to her heart's content and we don't have to suffer hear it. So, no hearing aid = no blue tooth = REALLY loud volume - for all of those around her. Oh, the sacrifice! Not to mention that we have to repeat ourselves, like a lot. I mean, that's already a given with kids, am I right? Now throw in some good hearing loss and well, that takes it to a new level of annoyance. And we try SO hard to not show her our annoyance. I mean, she can't help it, after all! I joke, but we aren't monsters! Not long ago, after I said a bunch of stuff to her, she looked at me with those cute little eyes of hers and an evil little grin and said, "I wasn't listening, can you repeat everything you just said?" 😑 That little jokester! I tell you, she is funny!

I scheduled an appointment with her audiologist to have her test her hearing and make a new mold for her hearing aid. I can't remember if I mentioned or not that the shape of her ear must have changed because of the jaw surgery. Since the temporal wall is shared by the jaw and the ear, the jaw surgery affected her ear shape.  I'm guessing here, though.  Because it is hard to tell if it was just swelling for so long - or if it changed for good.  We will know when we can finally try to put her hearing aid back in.  We haven't been able to because of that growth and because her ear canal has been full of debris.  And because that growth has made her whole ear really sensitive to touch. 

Anyway, her audiologist was unable to do any testing.  For one, she cannot wear the headphones in the booth because that growth is in the way. Also, her ear canal is full of debris.  So, her audiologist had a nurse practitioner take a look at Harlie while we were there.  The NP went and got a doctor (I think she told me he was an adult plastic surgeon) to take a look.  He also didn't know what it was. He said he needed to poke it to see what was in it. Here we go again (never got any useful information from the last time). Since Harlie was on her tablet, he said he could do it right then while she was distracted.  Haha! I love it when people don't realize how aware and smart Harlie is. 

So, he went and put gloves on and hid the needle behind her head.  Harlie turned towards him and said, "What are you doing?"  I think he was surprised. I'm guessing he knew he couldn't lie to her, so he said something like, I need to drain this growth, just look at your tablet, ok? Then she said, "Let me guess, you have a needle."  Haha!  He tried, but she wasn't having it. So, he grabbed some scissors and clipped it really fast. It only bled. In summary, he wasn't sure what it is but said it has to be removed in the OR. 

I ended up emailing her surgeon in Boston and sent him some photos and brought him up to date. At this point, three plastic surgeons had seen it. I asked her surgeon who should remove it - plastics or ENT?  Since we need to get the debris out of her ear canal, I sent photos to her ENT in DC.  He can remove the growth, clean her ear canal and do a bronchoscopy to see if anything has changed in her airway since her jaw surgeries. Sounds like the most efficient start. So, that is scheduled for Monday, August 2nd. 

After getting the date (like a month ago), her whole right ear got red and angry.  I sent new photos to her ENT and he put her on antibiotics.  While on these ABs, she developed a pocket of stuff on the left side! Now the left side keeps filling up with fluid (not blood) and draining some on it's own. More wound care, which got old like four years ago.  

Today is Saturday and her surgery is Monday.  She woke up this morning with a new pocket of fluid under her chin!!!  Are you kidding me?!?!?  This is the worst game of whack-a-mole, ever!

We have to look at her spots several times a day and we have been doing this for months now. The other night I looked at her left side and sighed.  She asked, "How does it look?" I (also not wanting to lie to her) told her it was swollen again.  Then she exclaimed, "OH, C'MON!"  She cracks me up.  She is so funny, even when things suck.  I have no idea where she got that kind of sense of humor.  ;-)

I have attempted to write this post several times since last week and I keep getting interrupted. Today is now Monday, and surgery is today. 

I have had numerous conversations with nursing staff from Children's National in the past week. Two pre-op nurses called to go over her history, etc. A nurse called me specifically to ask me when her Covid test is and that it is my responsibility to bring proof of a negative result. That conversation got old a year ago. I HATE being talked to like I am an irresponsible idiot. But, that is what everyone assumes now. We are all idiots who are a danger to society. 

Lastly, I got the nurse who called to tell me what time Harlie's surgery is (that is usually late in the day, the day before surgery).  I can't believe it, but they told me that she was scheduled for 5pm! Wow. Never has she been that late. And, honestly, I was surprised because it was her ENT that said he would never do surgery on her in the afternoon again. That was after he ended up having to do an airway reconstruction (called an LTR, which is a HUGE deal) at 3pm. 

So, I asked her if she was sure.  She said yes, Dr. P has a busy schedule that day.  I told her I was just really surprised, I didn't think he wanted her to be late in the day. She apologized, but what could I do? I was like, well, okay then. Maybe he feels confident that this won't turn into something more serious. Okay. Plus, she said Harlie is 14 now. And while I certainly know that's true, it doesn't mean that she acts like a 14 year old. And by "acts" in this sense, I'm talking about her medically. I just don't think lumping her in with every other 14 year old makes sense. But, blanket policies that disregard the particulars (and cater to the healthy and typical) are all the rage now.  

Take, for example, the NPO (nothing by mouth) instructions prior to surgery... the nurse calls and tells me she needs to be NPO after midnight - for a 5pm surgery time. That's 17 hours, people. Dumb. Totally dumb and completely unnecessary for her to go without eating for 17 freaking hours. This isn't a colonoscopy! Not to mention the complete disregard to her heart defects.  Her cardiac situation and passive blood flow requires that she stay well hydrated. Thankfully, I'm NOT an idiot and I know not to adhere to those instructions. So, I told her, sorry, I'm not doing that.  She is g-tube fed, and is tube fed liquid formula and she needs to stay hydrated. So, she tells me to stop her feedings 9 hours before surgery and I can give her clear liquids like GINGER ALE up to two hours before surgery.  I'm sorry, did I hear her right?  Did she really just tell me I could put ginger ale in her g-tube?!  Who does that?!  Why would someone do that?! I really don't think anyone would do that. Ugh, this is a major problem with over instructing people - they stop thinking for themselves.  She's on auto-pilot and isn't even listening to parents while she is doling out pre-surgical instructions!  

Anyway, earlier that day, Harlie had to have a preop check up and a covid test. I was stressing a little bit because the hospital requires a covid test to be done within 72 hours of surgery. This means that we had to do the test on Friday. But, that means that I can't have proof of results ON PAPER until Monday morning after the office opens at 8:30am. I say this because that's what the lady told me - that it was my responsibility to bring proof of results - on paper - with me to her appointment. But, without knowing what time the procedure was, how could I promise that? I mean, if her surgery is scheduled for 7:30am (which is the usual time for Harlie) then that means I have to arrive at the hospital at 6am. On a Monday. Which means I have to leave my house at 4am. So, how can I get the paper during the weekend when the office is closed? And, for some reason, this office will not email me the results.  This was a problem when I realized that I forgot to go pick up the paper for Cooper's negative results when we were driving through NEW YORK on the way to Maine for summer camp. UGH! For real.  Luckily, they said they would fax the results to the camp office. Regardless, that isn't going to work when the hospital needs the proof at 6am.  

My other option was to drive her to the hospital in DC and have her tested there.  So, I would take a day off from work, drive at least two hours to get there, get a 10-second swab, then drive at least two hours back, pay for gas, etc.  Um, no, thank you. 

So, when I was told that we didn't have to be at the hospital until 3pm, I was like, well, at least that solves the covid test problem. I can easily swing by the office before leaving my house at 1pm. Fine. 

We had a regular morning, worked out and I took my time, walked the dogs, and then got ready for the drive to DC. I packed an overnight bag (just in case) and started to load the car when I got a phone call at 12:30 from the hospital. I saw the number on my phone, and I was like, that's weird. It can't be good that they are calling me. 

Hello?
Hi, is this the parent of Harlie?
Yes, this is Christy. 
Hi, well, Dr. P wants to know if you can come next Monday instead of today. He doesn't want Harlie to be such a late case. 

Great. Took the day off from work for nothing. Awesome.  I also rescheduled her GI appointment and canceled her teacher today.  Apparently, they were supposed to tell me on Friday. 

Now I have to do all of that again - the covid test, taking a day off from work, canceling her teacher, and her speech therapy next Monday. Except now I get to worry about that freaking piece of paper with her covid-negative results because she said she will be an early case.  I'll have to call her doc tomorrow and get something figured out. I don't want to deal with that today. I'm taking the rest of the day off. 

But, you have to take the good with the bad. And I love Dr. P.  And one of the many reasons why I love him so much is that he isn't even scheduled to be in the OR next Monday. But, he is going to go in JUST FOR HER because he does not want her to go in to the OR so late in the day. So, he must remember that day three years ago as much as I do. Man, there is something so great about that. 

Oh, before I go, here are some random pics since I haven't shared any in so long...

Harlie reading to Mabel.

Harlie at the paint store.

Harlie's growth-thing at different stages...

The growth-thing on the left side.

Harlie checking out her bird book on the deck the other night. 

Harlie at speech therapy, sporting her speaking valve.

She's really been a super busybody lately. She must be feeling better and her blood levels must be getting back to normal. She definitely has more energy now. 

Okay, that's it for now. I have so much more to share, but I will have to share later. I'm going to take advantage of this impromptu "free-time" and take Harlie to visit my mom. As always, thank you so much for caring about this crazy girl of ours. We do love her so much, and we appreciate that so many of you love her, too. 

Much love,

Christy xo

Have we done Harlie's LAST trach change????

Hi! I just want to post a quick one before our BIG day tomorrow!

First, I just want to say thank you, from the bottom of my heart to all of you who get what a huge big deal this is to Harlie, and to us.  I am always amazed and shocked at the crazy amount of love and support we receive from you before, during and after all of our big deals.  We are truly lucky people to be surrounded by all of you.  I will never be able to thank you enough...

Second, I DON'T KNOW WHAT TO DO WITH ALL THE EMOTIONS I'M FEELING!!!

It's so overwhelming!  I want to be SO excited.  And, I am!  But, this isn't our first rodeo, and we know first hand that things can go awry and that Harlie has never, and will never be, a textbook case.  Her ENT can go in there tomorrow and find something that's been there all along, but we never knew because of the trach.  And we could leave devastated.  It goes without saying that we hope that isn't the case.  duh.  But, that fear - and the instinct to protect ourselves - is there.  And that's what keeps us from being able to just focus on our excitement.

Plus, even though this is a day we have dreamed about for just shy of nine incredibly arduous years, I don't know what to do now that it could be here (well, tomorrow).  It's so hard to explain.

But, in the past, when I thought about it, it hurt because it just couldn't be.  So, I had to stop thinking about it.  I had to put it out of my mind and focus on enjoying life the way it was. But, now it's happening (or could be, see how hard this is?) and I've never thought past this moment.  I have no idea what it will be like.  What will she look like without that trach around her neck?  I've never seen her without it.  Except when she had heart surgery and they had to take it out because of infection risks.  But, she was completely OUT and she had A LOT going on, so it wasn't anything to enjoy.  Will her voice sound different?  Will she be okay?

The other day Harlie said she wanted to go camping.  I explained that we are going in the fall, that it's too hot now.  I went to the calendar to show her when we're going and she exclaimed, "Oh, that's too long!" So, she said she wanted to go "short" meaning sooner.  So, she picked a day and drew a tent on it (the 4th).  It was then that it occurred to me I had not even wrote her big day on the calendar.  I just circled it.

Crazy emotions, right?

Soon after we brought Harlie home for the first time, I found a support group on line for parents of trached kids (the Trach Board).  And after kids were decannulated (had the trach removed) parents would post a picture with something like, "Meet the newest member of the naked neck club!"

I can't believe after almost nine years of hearing the term "naked neck" that I could be saying those words.  Like, tomorrow.  Holy crap!

It's so surreal.

Good luck, my sweet Harlie Caroline.  If you enjoy life this much with the trach, I can only imagine how much you'll enjoy life without it.

God love her!

Well, I have to go now.  We have to get up early tomorrow and get on the road to DC.  Check in time is 9:30am and OR time is 11:30am.

Thank you again for all the love and support!  I'll be sure to keep you posted!

Much love,
Christy xo

ENT appointment

Today we went to see Harlie's local ENT.

But I was determined to get in a run today.  So, I squeezed in a three mile run - in the rain - before we left.  For those of you who know me well, you know how much I loathe running in the rain.  Just goes to show how much I needed to run.  I was super short on time so I had to rush to shower and change and I had to drink my breakfast.  But, it was worth it.  My mom came over to watch the boys for me.  I knew this would not be a good appointment, so I really didn't want the boys there.

We pulled into the parking lot and as I was getting my stuff together, there was a knock at my window.  I about jumped out of my seat!  I turned to look and it was my friend Kat!  She saw us on the road and followed us there just so she could give me a hug!  I love my friends and how good they are to me! What a great way to change my mood!  Thank you Kat!

Coincidentally, when we got home from the appointment and I checked our mail there was a card in it for Harlie from Kat and her kids.  She sent it to the hospital, but it didn't make it to Harlie while she was inpatient.  Kat was smart enough to put MY address as the return address, that way it was still sent to me.  I'm impressed Kat!  I would never have thought of that.  The card is a picture of a sweet Pug (although that's probably redundant, huh?) with a hospital gown and a thermometer sticking out of his mouth.  Too cute!  Thanks Kat!

Anyway, after we said good-bye, we headed up to see the ENT.  I told Harlie every time she pointed to her mouth that we were going to see the doctor and maybe she would be able to help.  I tried to prepare her for sitting still and letting the doc into her mouth.  Whatever that's worth.

The appointment went as I expected.  It was a brawl.  That little girl can wear out three adults.  I sat in the chair and put Harlie in my lap so I could bear hug her with one arm and hold her forehead with my other arm.  Terri held down her legs and the PA held onto her hands or arms, whichever slipped from my grasp.  And the doctor tried to do what she needed to do in the middle of all that fighting.  I really believe it was painful for us all.

Her doc had to use metal tweezers (no sharp points) to get in there and pull out a sample.  It is really stuck in there!  She pulled one sample from the back/roof of her mouth and had to work really hard to get a chunk off the back of her tongue.  None of us could hold that down!

She sent the two samples off to culture.  She said she should have a preliminary report sometime tomorrow and will call me.  She said that as we swallow, we get rid of dead cells.  She thinks that those cells aren't able to go anywhere, so they are collecting, drying out and attracting bacteria.  She's gagging all the time because this stuff is sticking to the back of her tongue.  Ugh!  How awful.

She gave me the names of some oral gels and moisturizers to try to coat the inside of her mouth to keep it from drying out.  As soon as we got home, we tried them.  Applying this gel stuff (or spray) is not as easy as you might think.  Apparently this gunk has made her mouth sore - because she is SUPER sensitive to touch.  Coating the inside of her mouth with the gel - and doing that several times a day is going to be a battle.  More fighting.  I'm so over fighting her and causing her pain.  I wish I could just comfort her instead.

I will say that I'm glad this is all happening now and not after our appointment with her surgeon.  Now we can talk about this and hopefully get some more answers.  It sounds like this could be an ongoing problem.  What if she can't close her mouth for like... two months?  Two years?  Will this not go away until she can swallow?  Because, I have to tell you, we CANNOT live like this long term.  And her surgeon told me that if she can't close her mouth that she can do another kind of surgery in a couple of YEARS.

For now, we just have to hope and pray that Harlie will figure out a way to close her mouth.  And soon.

It's so frustrating.  You try to make one thing better, and other problems develop.  Not even problems that you could have predicted.  Because I have to tell you, right now, if this problem doesn't go away, I will regret this surgery with every fiber of my being.  I try to remember that I felt this way almost exactly one year ago.  And somehow we came through and life was enjoyable again.  That will happen again, right?

There are small periods of time when the fear of the unknown is greater than hope.  And that's where I am right now.

Oh, and another thing, the right side of her jaw looks more swollen to me (and to Terri) and she is really complaining about it.  Way more than she ever did post-op.  Tonight during her bath, her pin sites bled again.  And the incision under her jaw continues to bleed a little on the right side.  While she's not showing any classic signs of infection, I'm worried.  We've been there before - no signs of infection until it was full blown. Monday's appointment can't come soon enough.

I forgot to mention that our sweet neighbors brought up a present for Harlie right after we got home.  It took more than a week longer to get her up and playing.  This was her first true happy moment.  And she was playing with the remote control truck sweet Adam picked out for her.  He remembered that she wanted to play with his one day earlier in the summer.  Thank you Veronica and Bill - please tell Adam he made her smile, which made all of us smile.

Since it was a happy moment, I grabbed my sweet pup - who makes the days so much more bearable for all of us (probably me the most) and took a pic.  He is, by far, the easiest member of the family!

Thank you for reading and for always being there for us!

Much love,
Christy xo

Lots of updates

The past few days have been especially difficult.  Way too much to do, way too little time.  I'm spread too thin.  Things, important things, aren't getting done.

But, before I get into that, here is something I haven't blogged about yet.

Murphy turned NINE years old on May 11th.  Gasp.  Nine!  How did that happen?  He was such a cute little bugger.  Here he is at two...

Crazy how fast time goes by.  Life was so different with this kid.  Those were a glorious 2.5 years. How carefree and naive we were!  And we were never sad.  My, how things have changed.

Well, being the awesome mom that I am, last year his birthday party was in August or something.  Pathetic.  So, this year, I thought I would outdo myself and have his party in May.  Late May, but still.  I know!  I'm good, aren't I?

We took him and a few friends to play putt-putt golf.  Then we went to Sweet Frogs for frozen yogurt and then home for a movie and a sleep-over.  I was super impressed when I woke up at 1:30am and heard silence.  I went downstairs to check on them and the tv was off and they were all in their sleeping bags, sleeping.  Way to go, boys!  I have a picture of them at putt-putt (the one and only picture we took, oops) that I want to send to all the parents with a note.  I hope I get to that item on my to-do list soon.  If you're one of the parents, don't hold your breath.  My intentions are good!  I promise!  Follow through, not so much.

And here's why...

Our last two days in a nutshell:

Wednesday, May 29th
7am - Run 3 miles
8am - go to Lowe's, buy dirt to plant flowers (preferrably before they die)
11am - Rooney, vet appointment
2pm - Dr. Dodson, ENT appointment, Harlie
5pm - Swim practice, Murphy

Thursday, May 30th
Terri off (no nurse means no school if I can't take Harlie myself)
10am - Dentist, Murphy and Cooper
1:15pm - Feeding Clinic appointment, Harlie
3pm - Hearing Impaired therapy, Harlie
5pm - Swim practice, Murphy

It might look like appointments are spaced out enough.  But they aren't.  There's no time to pee or eat.  Or walk the dog.  Or sit down (other than in a car, which doesn't feel like sitting down).  Or to do laundry, send emails, blog, go to the gym.  Or to pick up kids and drop them off.  Or to drive there! Blah!

Harlie has been coughing up some small blood clots in the morning (with her initial coughs after waking).  Then no more blood for the rest of the day.  This has been happening every morning for over a week now.  The first few days, I was like, "whatever."  But, it's been more than a week now.  And they are blood clots, not just blood.  Then she started to cough up a little of blood in the middle of the day.  Weird.  Especially considering she is not sick (thank God) and not coughing excessively.  Her sats are great and her nights have been restful with no coughing.  Combine this with the fact that she's not been tolerating her cap or PMV, and I was getting concerned that she might have a granuloma in her trachea.  So, I emailed her local ENT and she said to come in to see her the next day at 2!  Wowzer!  I've never gotten an appointment that fast.

Rooney had a vet appointment at 11am.  Then I had to go get Harlie and Terri and bring Terri back home to get her car.  Then I had to go pick up Murphy from school.  Of course I forgot that he rode his bike to school.  But, by then I didn't have enough time to let Murphy ride it home to drop it off.  So, I had to put it in the back of the car.

Then we rushed to MCV for Harlie's appointment.  Parking was a nightmare.  More than usual this time.  We parked, took the parking garage elevator to the street.  Then walked the half a block to a different building.  Then took a second elevator to the second floor.  Then got off that elevator and switched to a third elevator and took that one to the seventh floor.  Normally, I don't notice the ridiculousness of the process.  But, because I had all three kids and they kept looking at me with faces full of confusion, I noticed.  Plus, I'm tired.  And it's easier to get annoyed when you're tired. And of course my thoughts went to how awesome it would be if we had a real Children's Hospital.  Or even better, all healthy children.  Oh, to dream...

We all crammed into a very tiny exam room and saw her doc, Dr. Dodson, who I love.  First she looked into her ear and cleaned the wax out.  I know that sounds gross, but she can't help it.  Wearing an aid all day prevents any wax from working it's way out.  Harlie sat super still and Dr. Dodson was able to clean it all out.  I was so proud of her!  Then she scoped Harlie right there and Harlie did GREAT!  First she put the scope in her trach and did not see any granulomas or irritation in her trachea.  Then we removed her trach, and she put the scope in her stoma (just in case the source of the blood was around the cannula.  Nope.  Her trachea is "beautiful."  Which is fabulous, of course.  Except that leaves us with no answers.  :-(

If the blood isn't coming from her trachea, I guess that leaves her lungs?  Which means I have to contact pulmonary, which I don't want to do.  Quite frankly, I don't think I'm going to get any answers there, either.  She doesn't seem to be bothered.  So, I'm just going to wait it out a little longer. See?  I'm tired.  And probably seasoned.  I know doctors don't know everything.  I think I liked the innocence of thinking they did, better.

We got home that afternoon and then I had to take Murphy to swim practice.  Now that he's nine, he moved up into the next bracket.  So now he has to swim 50 meters.  Oi.  I don't have high hopes for this season.  And if he doesn't kick up some motivation and desire to put some actual effort in, it will be our last with him.  I just can't do it.  I don't mind working really hard if he loves it and wants to do it.  But, if he doesn't, I just don't have it in me.  I'd rather put that effort into other things.

So that day was all go (the morning was spent on planting flowers) and I got no time on the computer.  You know, to do the stuff that really needs to be done.  I don't know why I bought those darn flowers.  Now I just created more work for me that needs to be done in a timely manner.  

Then Thursday was crazy, too.  The boys had a dentist appointment at 10am.  And I have no nurse until Monday.  Both of our nurses are out of town.  So, I had to keep Harlie out of school.  Which totally sucks.  But, I have rescheduled that dentist appointment for months because of stuff like this - and I just couldn't put it off any longer.  So, off the three of us went.

We had to wait for an hour.  An HOUR!!!  Something must be going on with this office, because I have never had to wait that long.  Anyway, Cooper was already super whiny and thirsty and hungry by the time we got in there.  Awesome.

But, surprisingly, he was good - while in the chair.  Out of the chair was another matter entirely.  So, Cooper and Murphy got their teeth cleaned.  Cooper has a very small cavity.  Crap.  So, they want to fill it while it's still small.  Murphy's good.  And I didn't make Harlie an appointment because I was thinking that she's seeing the dentist in Boston.  Which is stupid of me because they aren't cleaning her teeth!!!  Ugh.  Having two dentists in two different states is not fun.  So, after the boys were done Harlie signed "my turn" and she broke my heart.  I wished they would just work her in real quick, but apparently it was close to lunch.  I don't know what the reason was.  There weren't any patients when we left (near noon) and there were several dentists and hygienists.  Hmmm.  Anyway, that sucked.  And it's totally my fault.  I just wish they could have bailed me out.

So, we got on the road at noon and then I realize that Murphy missed lunch at school.  Now I have to go by and get something for him to eat before taking him back to school.  Fine, whatever.  It's just that I had no time since I had to have Harlie BACK to the same place in an hour.  Ugh.

For the record, I don't plan on scheduling things like this.  It just happens.  Especially when Harlie's sick, so I have to reschedule something (which was the case for both of these appointments).  And with the Feeding Clinic appointment, she must be seen every so many days to stay in the program. And we had already pushed that envelope to the max (it had been like 263 days since our last appointment and we are supposed to be seen every four to six months).  But with this past horrible winter for Harlie, I had to reschedule, and it takes three months to get another appointment.

So, there you go.  It's just the way it is.  Which is why these past few days have been so difficult.  It's been all go and for nothing I want to do.  Sometimes, that just gets old.  OLD, I tell you!

Anyway, so I dropped Murphy off at school.  Ran home and fed and walked the dog (man, I love that dog!) grabbed a granola bar for me, fed Harlie and left Cooper with my Mom, got back in the car and headed back to the Children's Hospital.

To clarify, the "Children's Hospital" is not a hospital.  It is a long term care facility for kids who have medical needs that prevent them from living at home (or who don't have a home) and an out patient center for therapies (PT, ST, OT and feeding) and there is a dentist office.

So, we drive right back there and I park the car.  Harlie says, "Mama!" and I turned around and she smiles a big smile and points to her teeth.  She thought it was finally her turn to get her teeth cleaned.  Ugh.  Break. My. Heart.  Seriously?  What freaking kid wants to go to the dentist?  Especially with her oral issues!!  I hate myself for not including her in the appointments.  But, how was I to know she would want to have her teeth cleaned so bad??  Heck, come to think of it, in my defense, Harlie wasn't even supposed to be with me!

She now has an appointment for June 26.  Let's hope she's in the mood that day.  Oh, and to get Cooper's treatment for his small cavity (which the dentist said she wanted to do asap) yeah, August 3rd.  Whatever.

Moving on...  We go in for her Feeding Clinic appointment (15 minutes late, which, in my opinion, isn't bad all things considered).  And we waited some more.  We see the Feeding Clinic to see a nutritionist and make any changes to her feeding plan, discuss some GI issues, etc.  Finally, we go back and get her weighed in and measured.

She now weighs 42 pounds.  Woohoo!  Except that's not enough, really.  Darn it.  While she gained some weight, she dropped on the growth chart.  She is the size of an average five year old.  Which I figured since her and Cooper are the same size.  She finally just outgrew size 4t clothes.

Right now, Harlie gets tube fed four cans of Pediasure 1.5 (350 calories per can) per day.  We now have to add in an additional four ounces per day.  I know that doesn't sound like much.  But, I don't know how were going to do that.  It's difficult to get the four cans in some days.  And it's going to be really important for her to get those calories after she has surgery.  Her body is going to need all those calories to heal.

So, we left that appointment and hurried home to try to make it by 3pm so Harlie could get in her hearing impaired instruction with Cheryl Sale.  She comes to the house once a week to work with Harlie.  We got home at 3:10.  Whew!  Cheryl waited for us and Harlie seemed to have a good session with her.

After that it was time to take Murphy to swim practice.  Oh, brother!  I was really tired by then.  I still had not put away the clean dishes, or worked on the laundry that was half done.  Or sent the emails I need to send, or worked on the Medicaid letters I need to get done, or written any thank you notes, etc.  Wait, that's not totally true.  I did work on the Medicaid letter while Harlie was working with Cheryl.

So, I asked Harlie if she wanted to go to the pool.  You should have seen her face light up.  I asked her if she wanted to play on the iPad at the pool or get in the water.  She signed "swim" and her face was so freaking cute.  I wish I could have gotten it on video.  Then she gave me a kiss and a hug.  Which was so cute considering I asked for a hug and kiss while we were waiting at the feeding clinic and she said no.  I guess she decided she liked me again.

Well, who could refuse her cute little face - especially considering the whole dentist thing earlier.  And the fact that she spent practically the whole day at the Children's Hospital.  The only fun thing we did that day was take the dog for a walk in the morning.  We stopped by and picked up James (Cooper's friend) and I took them all for a long walk with Rooney.  The boys rode their scooters and I pushed Harlie in her chair.  We walked by the school and I couldn't believe our luck when I realized that the third graders were having an early recess in the bus loop!  So, we waved to Murphy.  I could tell immediately that he was embarrassed.  Whatever.  So, I waved even more enthusiastically and told the kids to do the same.  ;-)  Good times.

Anyway, so we all put swim suits on and headed to the pool.  Tom came up and met us up there after work.  We let the kids play for a while and left at 6:45 to go home.  The house was a wreck, everyone needed to eat, the dog needed to go for a walk, and it was bath night.  It was a busy, busy day.

This post is so long already, but I'm at school with Harlie today, so I am sitting in front the of the computer.  I guess I'll write for as long as I can.

So, back to my to-do list.  It's crazy long.  And some things are time sensitive.  Like these letters of medical necessity for VA Medicaid (since she's having surgery in Boston).  Or this meeting with the Prentke Romich rep to see about getting Harlie a new communication device.  They have stopped manufacturing Harlie's model because they are using the new tablet style technology.  And one of the new ones is super light and her ability to carry the device around herself could be life changing. But, we need to have that meeting before her surgery since she will probably be in pain which could affect her testing on the devices.  Blah, blah, blah.

So, I've tried all different "systems" of managing my to-do list.  But I have finally come to the conclusion that it's not a system problem.  It's a time problem.  There just isn't enough of it.  Period.  So, I think I need to be more efficient.  And one way to be more efficient is for me to have all of the stuff I manage (Harlie's medical and educational material is immense) in one place.  Crazy concept, right?  As of right now, I have notebooks in the kitchen, crammed in two separate cabinets, in the hall closet, and in the laundry room.  Seriously?  File one piece of paper?  Yeah, I don't think so.  So stuff just gets stacked and then I have to go through that stack to find what I need.  Because I know it's in there.

In summary, I need an office. Bad.  Really, really bad.

I came to this conclusion several months back.  Actually, longer ago than that.  But, my hands were tied because we still needed the playroom downstairs.  I am not ready to send Harlie to the third floor to play.  No way.  I will spend all my time trudging up and down the stairs tending to her.  But now, I am fine with her playing in her room.  She has a monitor in there and I can hear when she needs me.  So, I have spent a lot of time going through the playroom and purging toys, separating them into giveaways, consignment and keepers.  Then the keepers got put in the appropriate child's room.  The playroom is essentially empty.  I just need Tom to saw apart the last cubbies so I can re-use them and put them upstairs.  Then we need to replace the flooring, and buy some office stuff.  Like a desk, and cabinets and whatever.

So, on Wednesday night, (which was the day I went to the Vet, ENT and swim practice) we were supposed to drive to Northern VA to go to the Ikea store to check out the office furniture.  I want to do this as inexpensively as possible and I want the office to be pretty modern with not a lot of stuff to clutter it up.

Granted, I didn't have a lot of energy for the trip - but it was the ONLY night we could do it for several weeks and I need this room so, so bad!

Well, we ended up not being able to go.  And I was disappointed and frustrated.  And I was tired.  And annoyed that so many things I do are things I have to do and don't want to do.  And it doesn't help that the next couple of weeks have some really challenging days in them.

For over SIX AND A HALF YEARS now I have had to do countless things that have been unpleasant or downright painful.  And I have tried to be happy and smile through it all.  I guess I was just really, really tired that night.  So, Tom came home and I really had nothing to say.  So, you know it's bad when I'm quiet.  He kept on asking me stuff trying to get me to talk, but I just didn't feel like it.  Crazy, I know!

I just feel so... raw.  Like even the littlest of things - that I normally blaze right through - hurt.

So, you know it's bad when you're husband TRIES to get you to talk and then announces he's going to the store to buy wine, and comes promptly home and immediately opens the bottle, and then brings you a full glass.

It's been rough.  And I feel bad for him.  I wasn't mad at him, exactly.  Although, I need his help for this office project (I've done all I can do at this point) and you know the proverb, A cobbler's child goes barefoot?  Grrrrr.  So he got the brunt of my crappiness.

Life is hard.  And somehow we have to keep our chins up and smiles on our faces.  I think an office will help me do that.  If not that, Tom's going to have to buy a lot more wine.  ;-)

I'm about to wrap this long post up, I promise!  But first, a few pics...

Today, Harlie had speech therapy with Amy.  And she drew this...

I don't know about you, but that is the cutest darn snail I've ever seen!

And the other day Harlie was watching Wild Kratts on the computer.  She kept on asking us to look at the fish.  After a few, "Yes, Harlie, I see the fish" I realized she must be trying to tell us something.  So, I asked her to tell us with her talker.  And this is what she "said."

Ah ha!  So, she wants to go to an aquarium!  Awesome!  And with surgery in Boston in less than five weeks away, she'll get to when we get there.  Or maybe we'll have to take a trip to the Baltimore Aquarium before then.  Our kids have never been there.  I suppose we should try to cram as much fun as possible into June so maybe I can live with the guilt of what this summer holds while her jaw is being distracted.

Another huge sign of progress in her language development happened the other day.  We were standing in the kitchen and all of a sudden Harlie verbalized, "I gotta go potty."  I totally understood her.  And she wasn't saying that because she was prompted or asked or forced.  She just had a thought that she verbalized.  That's a first, for sure!

Okay, that's it!  We are home now and many other tasks are screaming my name (as well as my children!).

If you're still reading - thank you!!

Much love,
Christy xo

Happy Thanksgiving, and updates.

It's Thanksgiving Day.  I should be writing a mushy post about how thankful I am for so many blessings in our life.  And I am thankful.  But, I'm thankful every day for that stuff.  Seriously. Not a day goes by that I don't think about how different our life could be if we weren't so blessed.  So, spending one day to write about it just doesn't mean much to me.

Plus, if you haven't guessed from my serious lack of posting, I'm kinda in a funk.  And I think it's a worry-funk.  I find myself seriously worried about all kinds of things.  Like the state of our country, our economy, the potential of what's happening to seriously affect Tom's job and our livelihood, Harlie, Murphy, Cooper, etc.  It's terrible.  I am not a worrier by nature - so this is a new change, and one I'm not happy about.

So, to bring you a little up to speed... here are some updates:

BAHA
A few weeks ago Harlie had an appointment with her local ENT to see where we are with her bone anchored hearing aid.  Despite knowing the overall time table, I still had my hopes up that we could be on the fast track.  I don't know why I do that to myself.  But as I've said before, hope is a funny thing.

She had the first surgery August 3rd.  The second surgery is usually done three to six months later.  The titanium implant has to go through ossification, where the bone pretty much accepts and grows around the implant to secure it in place.  Our ENT wants to give her the full six months to ensure that this process happens successfully.  While I understand (of course) I was still disappointed.  So, we will schedule the next surgery for sometime in February 2013.  Then we will have to wait at least six weeks after that for us to be able to actually use it.  It will take that long for everything to heal enough that it can handle the pressure of clicking the hearing aid in place.  I know that time will be here before we know it, but sometimes it feels like forever.

Plus I know that I have a lot of hope that having this bone anchored hearing aid will completely change her life for the better.  That somehow she will hear SO much better that it will improve her life, and our life, immensely.  I have a sneaking suspicion that I'm setting myself up for some more disappointment.

Trach Status
So, a few weeks ago, I did my own little sleep study.  As you might guess, the results were far from ideal (otherwise I'd be happier).

She fell asleep with the cap on just fine, while laying on her back.  Her sats were good - bouncing back and forth between 89 and 90 (which is good for her).  Within just a few minutes, her breathing became very noisy.  I turned her over on her side to see if that helped.  It did not.  The noise sounds similar to snoring, but much worse.  You can totally tell that her tongue is obstructing her airway.  I stayed strong and stood by, hoping that somehow she could control it and get past it. I tried to focus on her pulse ox to let her good numbers keep me strong.  There was one moment that she didn't breathe for a second or two, she stirred a bit but didn't awake and then her noisy breathing continued.  After about ten minutes or so, my stomach was in a knot and I couldn't take it anymore.  I removed her cap and her breathing relaxed and she was so much more comfortable.

I would say that her third jaw reconstruction was NOT a success as far as function goes.  Devastation does not adequately describe my feelings.  Writing about it earlier was not an option.

So, I e-mailed her oral surgeon in Boston the next day.  I told her about our "sleep study" and asked her when Harlie would be ready for the next surgery (I'm assuming it would be jaw distraction).  She said that she wanted her to have a real sleep study and if she failed that one, that we could do the next surgery this summer, 2013.

I then e-mailed her ENT in DC and brought him up to date.  I explained that we need to have the sleep study ASAP because it takes months and months to get on the surgery schedule (last year we scheduled her surgery in February and the soonest we could get in was August 24th!).  We need the results in time to get on the books earlier in the summer.

Our capped sleep study is now scheduled for January 13, 2013.

At some point (okay, on my mind constantly) I need to think about this.  Should we proceed THIS summer?  Is it too soon - emotionally, I mean?  Is it worth ruining a whole summer for her?  Jaw distraction (which is what I am assuming she'll have to have) will not be a fun, easy or quick process.

And I have to ask the question - how many surgeries will it take?  When do we give up?  Will she ever be decannulated?  I can't believe she is six years old, has had three major jaw reconstructions, and she is STILL trached and I am asking these questions.

I would never have guessed we would be here six years ago.  Again, I'm reminded of how funny hope is.  It is amazing that it returns, despite setbacks and/or proof that it shouldn't be there at all.  But I am unwilling to live without it.  It keeps me going.  It makes life easier to live.  And I still hope that January's sleep study will pleasantly surprise us.

Jaw distraction - for those that don't know - involves cutting the bone of the jaw on both sides, putting screws and rods on either side of the breaks and then turning the screws to extend the breaks, each day. With every break, new bone grows in its place.  Each day the screws are turned again, the new bone breaks, and newer bone grows in its place.  This continues for a while (I don't know how long).

Jaw distraction is not something I hoped for.  In fact, it's something I've hoped to avoid.  I really, really hoped that jaw reconstruction, would do the trick and that distraction would never need to happen.

Jaw distraction can be done internally, or externally.  Both techniques come with its pros and cons.  Both leave scars that are undesirable (plainly seen on the face, or felt in the mouth).  Jaw distraction was not an option before.  Her bone was not connected prior to her jaw reconstruction in August.  She now has bone to distract, whereas in the past, there was none.

When I think about all that goes into this I still can't believe that wanting her to be able to breathe through her nose and mouth and learn to talk and eat, is such a pipe dream (or a set of pipe dreams?).  Who the freak would have known???

About her being Non-Verbal
So, a few weeks ago, we had some friends over.  One of them was in the kitchen cooking with Tom.  Harlie was on the computer.  She pointed to the screen (which was on You Tube) and she signed the letter "M".  I asked her for more clues.  She then signed the letter "3".  I still didn't know what she wanted.  She was saying something that sounded like "hm hm hm har" or "hm hm hm heart".  Nope, still didn't get it.  I went and got her communication device.  I put it in front of her (while telling her I didn't understand her - and asking Tom and Mike for help in figuring this out) and she pressed the button for "animals" and then pointed (not pressed) to the button for "zoo".  I was frustrated at this point and clearly didn't understand why she would point to a button instead of pressing it.  Just press it already!!!  She finally pressed it and then pressed "lion".

So, here were the clues:

M
3
some word that has 4 syllables, and ends in a "har" sound
Zoo
Lion

And I'm embarrassed to say that I STILL didn't get it!!! But neither did Tom or Mike, so I wasn't alone.  I finally gave up and felt so horrible and sad and frustrated that I left the kitchen table.  I happened to walk past the dining room and I just happened to spot a DVD laying on the table.

It was Madagascar 3.

A-HA!!!

I grabbed it and took it back into the kitchen and asked Harlie if that is what she wanted and it WAS!!! Hallefreakinglujah!!!

Just minutes later Mike asked to see the necklace I was wearing.   It reads, "A mother knows the words her child cannot say."

I wish.

It kills me that her asking for freaking Madagascar 3 took so much time and energy - for the both of us. Especially when she was actually trying to say "Madagascar 3".  Two freaking words!  And it really illustrates the difficulty in teaching her new things (much more complicated school-related things).  Despite how smart she might be.

The other day I think her leg fell asleep.  I, of course, don't know for sure as she cannot explain what she feels or thinks.  If her leg felt funny, she could not ask me what was going on or why it was happening.  Nor could I try to explain it to her.

So many conversations lost.  So many learning opportunities lost.  So many moments lost.  It kills me.  Every day this happens and I know it.  I am so, so thankful for all that she can do, yet I feel such a sadness for all she wants to do, but can't.

I want to end with something positive.

Today I got to sit at a table with 20 people (give or take).  And I got to laugh with my husband, kids, nieces, nephews, siblings (and their spouses/girlfriend), aunt, a few friends and parents.  I am thankful.  Life is hard.  No doubt about that.  I worry.  A lot.  I love.  A lot.  I laugh.  A lot.  And I hope.  A lot.

Happy Thanksgiving my friends!
Love,
Christy xo

Boston, Post-Op Appointment

Harlie's follow-up appointment in Boston was Friday, October 19th.  Our flight was at 6:30am, which meant we had to be there at 4:30am.  Sounds ridiculous, I know.  But, it takes us a while to get through security, so we have to give us extra time.  So, in order to be there at 4:30am, we had to leave the house by 4:00am, which meant we had to wake up by 3:30am, and that's cutting it close.  I stayed up late the night before doing everything I possibly could to set us up for success.

Once we told Harlie we were getting on a plane the next morning, she was super excited.  She immediately went and got some toys she wanted to take with her.  Another milestone in her development!

So, when we went to wake her up in the morning (usually a VERY difficult task) she hopped right out of bed!  So, off we went and on schedule, too!

I can't remember if I've already told you the details of getting through security, but since Harlie has a pacemaker, she can't go through the normal scanning procedures.  And since she's a minor, she can't be patted down.  So, they have to call some boss somewhere and give him the low-down of the situation (where are we traveling, who are we traveling with, etc.).  This usually takes a while and we have to stand there waiting in the middle of the lines, while everyone goes past us through the walking scanner things.  After a security person comes over and talks to me and they get a female security guard to check Harlie on the other side, they let us go through.  So all of our stuff goes through the scanner, and Tom and I go through the scanner while Harlie gets pushed through a gate and we go off to the side after that.

They check all of our stuff again, by hand and they test her stroller and her hands.  The past few times her hands have come back with some alert or something.  So, then they have to test my hands and/or my clothes (depends on the airport and the security personnel).  Apparently her meds can set off the alarm because medication comes through your pores or something.  Kind of comforting to know the thing is that sensitive.  But, it adds another step and more time to our security process.

Then they make a copy of my driver's license and our boarding passes (just me and Harlie's though, never Tom's, weird).  The boss they had to call comes over and asks if Tom or I set off any alarms and then he ask us the same questions as earlier.  So far he's apologized for taking a while to get there.  Then they come back with my driver's license and boarding passes, and say thank you for being so patient, have a nice flight.  I have to say, every single time, they have all been very nice and professional.

So, as you can see, that takes a while.  So, we have to plan in extra time.  The flight was fine.  Harlie fell asleep, which is crazy strange.

But, she did have to get up really freaking early, so it was understandable.  And a welcome break for me!  By the way, forgot the camera.  So I had to use my phone.  You're going to notice that this is a recurring problem. Ugh.

My mom downloaded the book Wonder for me to my Kindle.  I haven't read a book in years (since The Help, which I loved), but I really want to read this one.  So, I pulled out the Kindle and started to read it.  And within minutes I was crying.  I knew what it was about (a 10-year old with a craniofacial syndrome, written from his point of view) but did not expect it to affect me so... much?  deeply?  I don't know, it just got to me.  I think what got to me the most, at that point (you know, page three?), was 1) that he could talk about how he felt to his parents and sister and he could ask questions and have conversations about what he had to go through (something Harlie can't do with us) and 2) how brave he has to be all the time.

I wanted to stop reading it.  But, I wanted to keep on reading it.  So, I pushed through and tried to keep reading AND stop crying.  It got so bad I needed a tissue or a wipe or something.  So, I had to ask Tom for a wipe from Harlie's bag.  When I got his attention and he looked at me, he did a double-take and was like, "What the hell is wrong with you?!"  And when I told him it was this book he rolled his eyes and laughed at me.  Well, that answers that, I'm totally going to make him read it when I'm done.  And I want to be there to watch him cry like a baby, too.

I haven't finished it yet, but it is a great book so far.  I highly recommend it - especially to parents.  There is a part in the book that reminded me of my friend, Ann.  A teacher at the main character's school teaches the students about precepts and the first one is "When given the choice between being right or being kind, choose kind."  But, even though it is really good, it is still really hard for me to read.  It makes me so sad that he has to be so brave all the time.  I can see a full post about this book in the future.

Anyway, once we landed in Boston, we took a shuttle to the hotel to drop off our luggage.  Oh!  And that reminds me, some of you may remember that during our last trip to Boston, both of our suitcases broke.  So, we had to buy new luggage.  Given the color choices of this particular luggage that Tom picked out, I opted for the green.

Well, the color green it is, and the color green it shows on the website are two totally different shades of green.  It is such an ugly color green - like pine green or something.  It reminds me of a vest (outerwear thing) that Tom and our friend Scott had and kept on trying to give to each other.  So, if they were visiting each other, one would sneak it in the other's backpack or they'd mail it to the other one.  Because neither wanted it since it was such an ugly shade of green.  And it's that shade of green.

Anyway, it rolls really nice, so that's good.  So, we took the free shuttle to the hotel near the airport.  We decided to stay near the airport so we didn't have to wake up so freaking early the next morning.  I didn't want to do that two days in a row.  And thanks to our wonderful neighbor, John, we had a nice hotel in which to stay.  Him and Jackie really spoil us!  We couldn't check in since it was so early, so we just stored our luggage there and took a cab to the hospital.

We got there early, and had breakfast.  Then headed up to see her docs.  The hospital there has a robot-thingy to deliver medical records????

The front looks like the front of a train.  It just goes by itself down the hall and then gets on the elevator.  It cracks me up every time.  I'm so easily amused!

The appointment went really well, I think.  Dr. Padwa was really, really happy with her alignment and her range of motion.  She was also happy that she has stopped drooling and is swallowing again.  She said she knew she would get it.  Seriously, she said that "it doesn't get any better than this."  I feel bad that we can't fully appreciate their skill and talent.  I will in the future, when Harlie can breathe without the trach.  But, I just don't look at Harlie the way they do.  They can see just her face, her jaw and see details that I can't see.  I just see... Harlie.  I can't really see all the details.  She pulled up some photos that I sent them prior to surgery and showed us what she was talking about.  Her chin used to be under her right eye (in vertical alignment) and now it's in the middle, the way it should be.  I don't know how I didn't notice.  Her teeth are definitely aligned.  But she has an open bite, so it still doesn't look totally "right."  She said that's just the shape of her top jaw - her back teeth touching isn't what's preventing her from closing her mouth properly.  She said that they can fix that (or make it better?) - but they can't do it until she's done growing.

So, they were able to move her jaw over a lot, and they moved it forward some (although that I cannot see).  They will definitely have to move it forward some more, but we don't know when that will be.  The rest of her face will grow faster than her jaw.  Dr. Padwa said that they will probably do jaw distraction (something I was hoping we could avoid) next time.  That is when they break the jaw and put screws and rods on both sides of the break.  Every day we turn the screws to make the rods extend in length.  This forces the bone to heal, and make more bone.  Each day when you turn the screws, it essentially breaks again and forces more bone to grow in its place.  It's not something I'm looking forward to, obviously.  And it wasn't even an option before - since she didn't have enough jaw bone.  Now that they've given her some bone (taken from her leg) they will have some bone to work with.

Here is an x-ray they took on Friday (you can see all the screws in her jaw and one in her forehead, between her eyes, from her first two jaw surgeries, which were a whole different kind of surgery).

So, in summary, the great news is that her jaw hasn't fused together, preventing her from opening or closing her mouth.  And her alignment still looks great.  In fact, Dr. Padwa said that it is "picture perfect."  I fully expected some sort of bad news - just because that's the way it usually is.  So, when she was so happy with it, my brain went blank and I had nothing to ask or say.  Ugh!

Dr. Labow came out of surgery to see us.  He agreed that she looks great.  So, we don't have to go back until next summer.

Dr. Labow, Dr. Padwa and Harlie

So, where do we go from here?

We need to see her ENT in DC for a bronchoscopy to see if we gained any space in her airway.  And then we'll need to get a capped sleep study done.  I don't think doing this in the winter will be worth it.  They usually don't like to decannulate (take the trach out) during the winter/sickness season.  It can be very difficult/risky for a newly decannulated kid to be sick while they are still getting used to breathing without the trach.

We really can't even think about that right now.  If she can't be decannulated after this surgery, it will be devastating.  And it will mean more years with the trach, something I just can't think about right now.  I just want to focus on her being happy and healthy.  And as long as we have hope - I can live with it.  I'm not ready to have that hope squashed.  So, I don't know when we'll schedule those things.  I guess I'll email her ENT in DC and ask him what he thinks.

We'll also have to get a dental/orthodontia plan.  She has a local dentist - and I love her.  But, she doesn't have an orthodontist.  And I'm thinking her orthodontist has to be one in Boston who can work with her craniofacial team.  But, that does make for a lot of traveling in the future.  So, I don't know what we'll do.  I know we're probably not going to do anything for at least another year (unless something comes up that we can't put off) so I'll probably put that on the back burner for now.

The worst thing about the appointment was them trying to get pictures of her.  What a mess!  She could not sit still for anything.  And there was a terrible delay from them clicking the button and the camera taking the picture.  It was a frustrating disaster.

Trying to get her lined up right.

Hello Goofy Girl.

Earlier silliness.

Some x-ray thingy.

Here is a picture of her at the airport on the way home.  Notice her chin and the alignment of her face...

Now look at this picture taken just before her surgery...

Now even I can see that change!  Great job, Docs!!!  Now why couldn't she just hold still like in this photo for crying out loud?!

Anyway, as we were leaving, Dr. Padwa turned around and said, "We just need to get that trach out.  Because she's beautiful."  Awww, thanks Dr. Padwa!

So, a great follow-up appointment.  Now I can focus on the other appointments I have to make.  We need to see her ENT here to see when we can do the next step in getting her bone anchored hearing aid going.  She sees her local cardiologist on Wednesday to have her pacemaker checked.  And I think we need to think about getting her back to DC to have another heart cath done to close her fenestration (a heart thing that is usually closed years before this - but we've had other things to focus on).  I bet I could just schedule all of her DC stuff for one big stay or something (sleep study, bronch, heart cath).  That would certainly be better than having to make separate trips.

Anyway, that's it for Boston for a while I think.  I had no idea it would be this "simple" - I fully expected more complications.  Knock on wood.

Okay, I'm on a roll now.  I hope to have another post tomorrow!
Thanks!
~Christy

Post-op Day 1

When we walked into the unit on our way to see Harlie this morning, we met one of her surgeons who was leaving.  He said that she was feisty.  Her face might change, but her personality doesn't!  He also said that there was less swelling than he expected and that she was moving her lips really well.  So, he was happy with how she looks so far.

I think her eye looks really good!

And she certainly is feisty!  No matter what you're doing - even if you're not touching her - she is blocking and shaking her head, "no!"  And she's already lifting her leg.  Granted, she's trying to kick you with it, but still.

When she woke up last night she slowly lifted one hand and really studied what the heck was going on.  Then she lifted the other hand (both hands have IVs) and studied that one as well.  Then she lifted her leg and studied that.  I'd give anything to know what was going through her mind.

I do think she looks really good, all things considered.  Of course, I will take photos each day so you can see her progress, too.

Her mouth looks horrific.  And she flat out refuses to let us suction it, or clean it or touch it, or even look at it.  But, I'm sorry, I know she'll feel so much better without a mouth full of blood!  So, I have to suction it anyway.  She shakes her head back and forth and she's only going to make us hurt her.  If she would only stay still!  I keep waiting for the day when she realizes that it won't hurt (or will hurt a lot less) if she doesn't fight us.  When oh when will that day come???  I totally get that she's scared and is trying to protect herself.  But it kills me to have to hold her down for something that shouldn't really hurt.

She looks so much better when she's sleeping.  When she struggles to open her eyes, you can really see how swollen she is.  And she just looks so pitiful.  The other micro surgeon came in to see her this morning and he said that she looks like she went 15 rounds.  I love honesty and a good sense of humor!

They took her Foley out today, which is good (infection risk).  But is bad because now she has to go potty.  With so many lines (still has an arterial line, two IVs and drainage tubes in her face and leg) that will be a challenge.

She's needed a lot of suctioning today.  I love this hospital (it's very parent-friendly) but the nurses have been a little different when it comes to suctioning.  I learned (almost six years ago if you can believe that!) to suction on the way down and on the way up.  If you don't suction on the way down, you just push the secretions further down.  I've told every nurse - but they only suction on the way up.  So, that's frustrating.  I guess the problem is that the way you learn is the way you do it and it's hard to break the habit.  But, I am surprised that they even do it that way to begin with.  You can see immediately that not suctioning on the way down is a lot more uncomfortable for her. Ugh.

The team discussed moving her to the floor at some point.  I had to put the brakes on doing that any time soon.  They are crazy if they think she can go to the floor (she still has an arterial line!).  I voiced my concerns (at this point it had not even been 24 hours since surgery - slightly premature if you ask me!) and they agreed.  I know getting to the floor means "progress" but um, no.  Not yet, anyway.  I just hope they don't push her too hard.

The micro surgeon said that he hopes we can go home next Friday.  So, that's hopeful.  And he said we'll have to come back for a follow-up four to six weeks later.  They will do some more imaging (CT scan) to see if the bone adhered.

An ENT resident came to look at her BAHA surgical site.  The surgeons looked at it in the OR yesterday and agreed that it was really red and looked like it might be infected.  She's on several antibiotics now, so we're covered either way.  But, they asked ENT to come take a peek.  Except that the ENT resident has NEVER seen one post-op.  So, that was helpful.  Not.  Although when we looked at it, I could clearly see that it wasn't as red as it was the other day.  He said it didn't look infected to him.  So, I guess we'll drop it and leave it alone for a while.  He asked when we'll see our ENT at home again and I said I don't know.  Then I thought about having to take her and how much she'll fight at every single doctor's appointment from here on out for a while.  It's like we're starting over again.  :-(

I think that's it for today.  Thank you for all your wonderful support!  I'll post again tomorrow.
~Christy xo

My Day

For some reason, I'm feeling really stressed today.

I recently decided to train for the half marathon in Richmond in November.  This summer has been really hard on my running.  I've spent the last three summers training for a half, and then two full marathons (although I switched to the half for the last one at the last second).  At any rate, for three summers in a row I had a purpose and a goal for my running.  Not having the time for that this summer has, well, sucked.

So, I decided to put the training on my calendar and see if I could make it work.  It's hard.  There are hundreds of other things I "should" be doing, yet I try to cram in a run whenever I can.  It's humid out.  Really, really humid.  And that is no fun to run in.  Especially by yourself.  When I was training the past three summers, it was with a group.  So, even though it was hot and sticky, it was just better when you threw in some socializing.  If I'm tired afterwards, my children don't care.  So, I have to keep going, even when I'm dying to just sit for a second.

Anyway, so I ran 4.5 miles today.  It was really yucky out.  I don't exactly get a lot of choices of times to run, and today it had to be done at 10am.  Not ideal.

After that I drank a shake, cooled down, took a shower and ran to go pick up Cooper from preschool camp.  I had to be out of the house, with Harlie by 12:30 to get her to her baha surgical follow-up appointment.  So, between the times of 12:00-12:30 I had to do the following:  pick up Cooper, make and feed Cooper his lunch, feed Rooney and take him out for a walk and make my own lunch.  My Mom came over to watch Cooper for me while I was gone.  Murphy was at Summer Blast till 2:30.  I knew I wouldn't make it to pick him up, so Tom had to go and get him and bring him home to my Mom.

In the process of making Cooper a hot dog and myself a peanut butter and jelly sandwich (only the best for us) I forgot to feed Rooney.  But I remembered to walk him, weird.  Anyway, I ran out with Harlie and my sandwich to rush off to our appointment.

I got there at 1:00 and signed in.  We sat there for an hour.  Not really unusual as far as appointments go.  But what kills me is what I had to do to get there by 1pm.  And for what????  I could have fed Rooney and walked him and not drove like a bat-outta-hell if I had to be there at 2. Grrrr.

Then at 2pm Harlie signs "potty."  For the second time in that hour.  We go into the restroom, which is out of the ENT's office and down the hall.  I would have told someone we were going, but no one was at the window at the time.  Anyway, someone had obviously thrown a dirty diaper in the trash in there.  So, that was a bonus.  Especially considering we spent 48 minutes in there.  FORTY-EIGHT MINUTES, FOLKS!!!

I wanted to come out of my skin.  Harlie was struggling.  And I felt bad for her - no doubt.  But honestly, I felt worse for ME!  I was so stressed.  I knew by then they had called our name and that our appointment time was long gone, filled by others.  And there was NOTHING I could do to help her.  It was awful.  I tried to distract myself by playing solitaire on my phone.  Do you know how many games you can play in 48 minutes?  Oh, and in that time do you know how many people tried the door, felt that it was locked, and STILL knocked?

I'm sorry, but yes, it is STILL occupied and I'm not happy about it, either!  One time I had to actually open the door - they knocked repeatedly and clearly weren't going away.  It was three small children.  And I had to tell them to get lost.  Okay, I was way nicer than that.  Although it was difficult to switch my attitude from completely annoyed at the knocker to nice when I found three small children, one of which was probably in the middle of potty training.  Poor kids.

Tom called while we were in there and I asked him if he gave her Miralax last night.  It's been determined that she has to have a daily dose of it.  Or this happens.  He says, no, he did not.  He thought I had switched the dose to the morning time.  Which I did a few weeks ago because of her antibiotics, but I had switched it back to nighttime again, and could have sworn I told him.  So, that means that she hasn't gotten it in a few nights.  At least.  OMG.  He also wanted to tell me about his lunch that was so good.  Some kind of really awesome salad.  From a restaurant.  Where he sat down in a chair and ate it.  Sorry, Tom, but I had a PB&J while I was driving, and I'm standing in a stinky hot bathroom, so now's not a good time to telling me about your delicious salad.

You'd think after five years we'd have stuff like this all figured out.  But, it's just not that easy.  And by the end of the night, we are both tired.  Which is why I make Tom do the night meds.  I hate doing her night meds.  With a passion.

Anyway, I'm sorry as I can be, but couldn't take it anymore.  I pulled her off the potty.  I mean, we could NOT sit in there all freaking day.  We returned to the waiting room to find a whole new set of patients waiting.  I suppose that happens in an hour's time.

I peeked through the glass in the door to see Ann, our audiologist.  I knocked on the window and when she saw me she said, "Oh, there you are! Where have you been?"  I told her I was trapped in a hot and smelly restroom, but I'm pretty sure that was obvious.  I suppose the one saving grace is that I could blame this all on my lovely, sweet daughter versus me.

They took us back within a few minutes.  And then the torture began.  It wasn't really that bad.  The doctor just had to clean the incision really good - since I clearly haven't been.  There is a really big scab on it.  And she said that the scab is covering the sutures and will slow down the healing process.  So, we need to gently try to remove it.  She covered it in some ointment and said we need to try to ease it off after soaking it in ointment for a while.

It took me bear hugging her and a nurse holding her legs and the doctor holding her head to get this accomplished.  Tom and I have been trying our best, but it's really hard for us to do this "activity" with her.

Then we left.  It was 3:20pm.  And I was hungry again.  The PB&J just didn't cut it.  And when I'm hungry, I get a little agitated.

So, I'm driving on a road that is two lanes.  Speed limit is 45.  And you know when there's a slow car in both lanes and they are spaced perfectly apart so that no one can get past either?  Yeah, so that happened.  I wished I was in a monster truck so I could run that poor woman over!  GRRRR!!!  They were both going 40.  Patience.  I have a lot of patience, right?

So, I get home.  Home sweet home.  With whining, fighting children and a TV and computer going at the same time.  So, I took Rooney for a walk.  I always get in a better mood when I take him for a walk.  It's really quite amazing.

We get about four/five houses down the block when somehow Rooney goes face first into a glob of melted gum.  Awesome.

So I had to try to get it off his face - with my bare hands.  Awesome-er.  So much for that walk!

That is at least the fourth run-in we've had with gum while walking Rooney.  The other times we just had to fish it out of his mouth.  Who knew there was so much gum laying around?  I guess that comes with living in a neighborhood full of children.

Tom called on his way home and said he is going to make a super delicious dinner for me and we are going to eat it after the kids are in bed.  And we are going to drink wine with it.  It's an impromptu in-house date night.  I already feel better.  And maybe I won't be mad at him anymore. Since our 48-minute bathroom stay was mostly his fault.  ;-)

So, that was my day.  So far.  It's only 6:30.

More later!
~Christy