Saturday, October 27, 2012

Camping

A couple of weekends ago, we went camping.  The whole family.  For the first time ever.  We went with some friends, Heather and Neal, Mike and Marcy, and their kids.  Tom did all the planning, along with Neal and Mike.  I just packed our stuff up and rode along.

Packing took a lot longer than Tom wanted (hey, I had to run 10 miles that morning, so I got a late start and then was moving a little slower than normal) so we got on the road later.  Which meant that we arrived to the campsite later.  Like after dark.  Exactly what Tom was trying to avoid.

The campsite was just a few miles from Natural Bridge, Virginia, about two and a half hours away.  It was a group campsite.  But, only one group could reserve it.  And that group was us.  Which was awesome because we didn't have to worry about the kids bothering other people or being too loud, etc.  It was perfect.

But, getting there in the pure darkness was a little unsettling.  First of all, I'm a total chicken.  And I will admit that I've probably watched a little too much true crime TV.  Anyway, we arrive at this campsite at the end of a long and windy - and scary - road.  You have to pull off the road onto a gravel road, open the gate, and drive a little more till it ends.  It was super creepy.  And it was cold.  And really dark.

So, when we all got there (we were following each other), I stayed in the truck with the kids and the dog, while Tom got out and figured out what he wanted us to do.  But, the kids (including the dog) weren't having any of that and fussed like crazy to be let out.  So, I gave in and let them out.  In the meantime the guys had flashlights and were trying to figure out where to set up camp.

No lie, like four minutes passed - FOUR MINUTES - when I heard Cooper cry.  I knew instantly that it wasn't just a whiny cry - it was a hurt cry.  Really?  Tom picked him up and looked him over with the flashlight.  Cooper had cut his face on the metal gate/sign that was at the end of the gravel drive.

Awesome.

We inspect the damage and it's very clear that the cut needs stitches.  I packed a first aid kit and just happened to put in some butterfly closures, so we tried those to see if they would do the job.  At least till morning.  They didn't work.  It was too close to his mouth, which was moving (non-stop, as always) and his nose was running, so that didn't help, either.

But, there was really no way to get him to the hospital that night.  All three guys were needed to set up the tents and start the fire, etc.  It was cold and it was late.  The only real solution would have been for me to take Cooper.  But, there was no cell phone service there.  So, if I got lost (which would surely happen) we would be up a creek.  Plus, that would completely change our adult to kid ratio (plus a puppy).  The bottom line was that it wasn't life-threatening.  We stopped the bleeding.  And a little tiny scar doesn't bother me.  My only concern was infection - but he's had all his shots, so I didn't think there was much we could do in that area.  So, we decided to just wait till morning to deal with it.  I actually feel sorry for my boys.  I'm a much different mom after all we've been through with Harlie.

So, we survive the night.  Although I slept very little.  A pack of wild, barking dogs on our way to kill us all, woke us up.  Funny how your mind plays tricks on you when you can't see more than 20 feet away.  And it was like 30-some freaking degrees that night.  It was COLD!  And when I packed, I packed all the kids' warm clothes, but somehow forgot most of mine.  Typical.

At any rate, morning (or daylight, rather) couldn't come fast enough for me.  I woke up with matted hair at the back of my neck from all my looking to my right, looking to my left, thinking, "What's that?" and "What was that?!"  ACK!

The campsite was a lot less scary in the daylight.  In fact, it was really, really nice.  After breakfast, we cleaned Cooper's face and we decided Tom had to take him to a hospital for stitches.  I might have been comfortable waiting the night, but I wasn't comfortable waiting another whole day or two.  So, Tom, Neal and Cooper drove towards civilization till they got cell phone service and then found the nearest ER.

When there, the doc said he needed three stitches.  Tom asked him if he could use Dermabond instead.  The doc said, "I could have if I had seen him within eight hours of the accident."  Ouch!

Tom said Cooper did great, all things considered.  Here's a picture after they got back.  Oh, and it was taken with my dying iPhone because... take a guess... we forgot the freaking camera!!!


Oh, and the best part is that his school pictures were scheduled for the following week.  Isn't that always the way???

After they got back to the campsite with Cooper, we said, "tag, you're it - you've got the kids." And Tom said, "Christy, I just spent three hours in the hospital with Cooper, you have NO idea what that's like!"  And yes, he was joking.  But we all thought it was hysterical.

Harlie did really well.  We barely had to use the suction machine.  We tried to go on a little hike down the creek - but it was very rocky and hard for her to walk.  And there was no way I could carry her safely.  So Heather took the rest of the kids and I hung out with Harlie.  Here's a picture Heather took with her phone (turns out all of us forgot our cameras!)...


Seriously, how freaking cute is my dog?!?!?  Rooney is the cutest thing EVER!  And he was such a good pup at the campsite.  He always stayed with us and loved running in the leaves with the kids.  It was so much fun to have him with us.  And he fit very nicely in our sleeping bag, too.  He's very cuddly.

After a full day at the camp, the second night was a lot easier than the first.  We were able to get all layered up for the night early, so we were prepared before bedtime.  Plus, it wasn't as scary.  Although, somehow, I woke up with matted hair - again.  It was also not as cold the second night.

The guys did great with all the food preparations so we ate well.  And of course we roasted marshmallows, and all that good stuff.  Here are some cell phone pics...



Our camp.  We decided that next time we'll spread out a lot more.  

Because look at all this space!!!

Somebody's loving life...

Harlie, Murphy, Mallory, Griffin, Cooper and Kaden

We will definitely go back.  We really had a lot of fun.

Thanks!
~Christy

Monday, October 22, 2012

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

Sunday, October 21, 2012

Birthday Parties

Wow.  I just can't believe how little I've been able to blog lately.  Pitiful.  

I'll start with Harlie's birthday party yesterday.  I don't know what's wrong with me lately, but I am forgetting everything.  Things have been really busy, and I've been having a difficult time keeping up.  It doesn't help that I am a terrible "planner" of anything.  Other than Harlie's medical journey, of course.  I actually feel pretty good about myself in that department.  But, I guess that's what happens when you have to put all your energy (okay, most of it) in one place.  And I do think that's a pretty important place for me to focus on.  Harlie is counting on me!  

So, birthday parties... I'm just going to come out and say it... I hate 'em.  I'm really, really bad at planning them.  And I see lots of moms on FB sharing their awesome kids' birthday parties, and all the awesome hard work they clearly put into them.  All because they love their kids and they are really good moms.  The BEST party planner EVER is my friend, Susan.  And if she didn't live on the west coast, I would totally hire her to help me (do it for me) and call it a day.  You can see a glimpse of how talented she is here and here.  Susan, I hope you don't mind me bragging about you, but you are an amazing party planner!  

I see those pictures and think Harlie deserves that kind of celebration of her life.  There were a lot of months I wondered if we'd ever be able to celebrate a birthday for her.  I consider every day with her a bonus.  I think about her life and potential death more than I'd like to, I can promise you that!  So, shouldn't I be doing all that planning and decorating and stuff for her?!?!?  

But, I can't.  I just don't have it in me.  There's not enough time or energy (or talent, truthfully).  And frankly, I don't think she really cares.  It's hard to tell without her being able to talk to me and all.  So, let's just go with that she doesn't care, okay?

This year, I'm blaming my lack of planning ability on Harlie's jaw surgery.  It was August 24th, and between that and the start of school, I had to focus on other things.  Her birthday is September 25th, so I really would have started to plan before her surgery.  Which was only one month before her birthday - so even that's not a good excuse.  Plenty of people start planning way before that!  But, before that, all I could focus on was getting to Boston - healthy.  And then getting home healthy as soon as possible after that.  And, keep in mind that I had no idea what to expect as far as recovery time post-op.  And considering she would come home without a bone in her leg, I had no idea what kind of recovery that would be.  Who knew she'd be walking so well so soon???

Last year, we had her birthday party at the The Little Gym and we invited all the girls from her kindergarten class, plus some friends.  Since her birthday is right after the start of school, there's no way to know who her "friends" are/going to be.  So, I just invited all the girls.  It was a great way for them to get to know her and see her having fun and playing, just like them.  And she loves gymnastics.  It was also a great way for me to get to know some of the other parents in the class.  And it really went well.  It was a great group of girls in her class last year and I have to say that I miss them and their moms terribly this year.  

So, this year she missed the first week or so of school.  So, there was even less time for them to get to know each other.  Plus, remember that I was focused on Boston, right?  So, by the time I thought, "oh shit, I need to plan a birthday party!" the easiest thing to do was call The Little Gym again (the gym I wanted to go to has stopped doing parties for now) and the next available date was October 20th.  Awesome.  

Then, who to invite?  If I invited her friends (like from her Daisy troop) or our friend's children, plus her classmates, it would be way too much - too overwhelming and too expensive.  So, I focused on building relationships with her classmates.  Which, I still felt bad about because, what kid has a birthday party where you don't invite their "friends" but people you want your kid to be friends with?  I found the whole thing to be a difficult situation.  Seems everything is complicated.  Even when it shouldn't be.  

It also didn't help that our follow-up appointment in Boston was October 19th.  So, we flew up on Friday and then flew back Saturday morning (landed at 11:30am).  Also, as a bonus, Harlie threw up most of the way home on the flight.  More awesome.  I could tell she didn't feel good.  And she hasn't thrown up like that in years.  The flight was a little bumpy (but not the bumpiest we've experienced) so I didn't know if it was motion sickness, or if she caught a bug.  We really thought we were going to have to cancel the barely-planned birthday party!  

But, once we got her home and on non-moving ground, she appeared to be just fine.  So, the party was on.  

The party was at 4pm, and at 3pm, I realized I forgot all about goody bags.  And for the record, I HATE goody bags.  The parent that started that stupid trend should be shot, in my opinion.  Talk about an over-achiever!  So I sent Tom to the dollar store to get some puzzles and coloring books.  I am not going to buy anymore junk toys to put in bags.  I just did it - against my better judgment - for Cooper's "party", and I refuse to do it anymore.  There.  I'm done.  In fact, I talked to a mom at Harlie's party who said she doesn't do it - so I now know I'm not alone!  Power to the moms who say "NO MORE GOODY BAGS!"  Who's with me????

Once we got there, I realized we forgot candles for the cake.  And the camera.  Really?  I'm a mess sometimes.  So, I had to use my phone for pics and luckily, they had candles there.  

I'm guessing that those who know me, know I try my best and that I have things on my plate that are not the norm.  To cut myself some slack, if I didn't have to focus so much on which surgery needs to be done next and where it should be done, or which therapies to work in our schedule, etc. I would probably be a lot better at all this "normal" stuff.  But, when I go out into the world and people who don't know me see how forgetful I am, I can only imagine what they think about me and my crazy family.  

Here's the best picture I got with my phone.


And here's the funniest moment from the party...

video

Despite the craziness of the day, or of the last month, she did have fun.  And that's really all that matters.  And I think her friends had fun, too.  They got to play together.  So, to me, that's a success.  Plus, if you really want to get down to it, Murphy's party was like two months after his birthday, and Harlie's was only one, so that's an improvement.  Cooper's was less than two weeks after his birthday.  But, his kind of sucked....

And I never even blogged about his birthday!  Ugh!  His birthday is September 26th (the day after Harlie's).  Cooper wanted a party at a playground.  It's all he talked about.  So, that's what we planned.  Except it rained all that day.  So, we had to move it to our freaking house.  And the LAST thing I want to do is have to plan activities for a party I don't want to plan!  That's why the playground is perfect.  So, the party ended up being a "play date party."  It was all free-play.  No structured activities.  

I really felt crappy during and after that party.  And I was really beating myself up about it.  Then, the next day, out of the blue, Cooper said, "Mommy, I really had fun at my birthday party."  It wasn't even what he asked for - repeatedly, for months - and it had to be changed at the last minute due to bad weather.  And all I paid for was his cake, a single balloon for the mailbox, junk for some goody bags and the reservation for the stupid playground ($25) that we never used.  Yet, he was perfectly happy.  Isn't that amazing?  It just goes to show you that kids (at least my kids anyway) really need so much less than we think.  That's what I'm going with, anyway.  

Okay, I think the next post will be about our Boston trip.  Stay tuned!

Thanks!
~Christy  

Tuesday, October 9, 2012

A Good Update.

This post is so long overdue that I have no idea where to begin!

First, I think I'll start with Harlie's overall status.  A few weeks ago I was really down in the dumps about where we were.  I just wasn't prepared for the ten steps back post-surgery.  You might think that after 30 of them I would have the whole thing down-pat.  But, I don't.  Each surgery is a whole new experience.

But, I am so happy to report that Harlie is doing... GREAT!  Seriously!!!  It's like she saw how sad I was and said to herself, "Okay, I guess I should give mom a break, she looks like she's going to crack".

A little more than a week after that post, I could see an improvement in her drooling.  I didn't want to get my hopes up, so I didn't say anything.  After one day of improvement, she would have a day of no improvement.  This went on for about a week.  Then one day, she came home wearing the SAME clothes that I put on her in the morning.  And then I knew!!!  She figured out how to swallow!!  There are no words to describe my relief and happiness.  No. Words.

We see her feeding therapist on Thursday for an evaluation to see where she is and where we need to go from here.  I am so, so happy that she's able to swallow for this appointment.

Academically she is doing great, too!  I don't know which is more shocking - her ability to swallow or her academic progress!

The problem with her academics has been her lack of willingness to participate.  I think most of her teachers (and us) believed she was capable - she just didn't want to show us.  Over a week ago, she came home and the report from her nurse was that she just flat-out refused to do what her teachers told her to do.  Well, clearly, we can't allow that to continue.  Her favorite thing in the world is the computer.  So, I told her she was not allowed to get on the computer that day because she didn't listen to her teachers.  I told her that wasn't allowed and she's at school to learn and work hard and saying no isn't an option.  She was very upset.

But, the next day she listened!  And followed instructions!  Last year she struggled with beginning and ending sounds.  You know, like mouse starts with m.  But, in order to do that successfully, one has to know what "begins with" means and be able to hear the sound m makes.  If memory serves, she started to do it successfully a little bit at the end of the year.

But, look at her now...


Awesomeness!!!

I am so proud of her!  And another thing that I've noticed at home is that there is much less of a delay between me asking her a question and her answering.  There used to be a very long pause or no response at all.  She doesn't always answer me - sometimes she doesn't want to.  But, for the most part, if I ask her something, she answers in a timely manner.  This is a huge improvement!  And it seems that each improvement, leads to another improvement... which is a fabulous trend!

Another development is that we were able to get Harlie back on her speech therapist's schedule.  Her ST is awesome and I just knew that she would be booked solid.  But, somehow she found a spot for us and we are thrilled!  She's had two sessions so far, and they have both been wonderful. She's not perfect (Harlie, I mean) and doesn't always cooperate - but again, the improvement in her following instructions is remarkable (in my opinion).  So much time was spent on waiting Harlie out and trying to find something to motivate her enough to do whatever it was that Amy wanted her to do.  But, it seems there is very little waiting now.  And in her last session her not listening was her trying to be funny and joke around with Amy.  Overall, another huge improvement!

Last, but not least... Harlie has been able to wear her cap consistently for the first time since March!!!  A cap is a solid piece of plastic that covers the trach and prevents air from flowing through her trach.  It forces her to breathe - both in and out - through her mouth and nose.  It makes her voice so much more clear and understandable.  Even to herself!  So, learning to talk will come so much easier to her if she can wear her cap more.  I tried the cap on last week and as expected, she yanked it off immediately.  But, I knew she could do it.  So, one day we went to take Rooney for a walk and she wanted to take a toy with her.  I told her she could only take it if she wore her cap.  So, she put it back on, grabbed her toy and walked out the house.  She wore it for 45 minutes straight, with no problem whatsoever.  The next day at school, Terri put it on her at 7:30am and when she got home at 2:15pm she was STILL wearing it.

It is amazing to me how everything is falling into place.  Especially after how I felt just a few short weeks ago.

This little girl...


totally amazes me.  She really knows how to bounce back.

We go back to Boston Children's Hospital on October 19th for our follow-up appointment.  I am now looking forward to hear how they think she's doing and what's next...

I have much more to tell you - the We Heart Harlie 5k, Cooper's birthday (poor kid) and a whole bunch of other stuff... but it will have to wait for now.

Thanks for checking in!
Much love,
Christy xo