Harlie Update, Way Past Due

Hi! After long periods of time of not sharing our life with you, it feels a bit scary to start sharing again. So, I'm just going to jump in. (I say that, but I started this post two weeks ago and it has been so hard to finish it! But, I'm gonna do it...)

Harlie returned to school (9th grade) in the fall of 2022.

First day of 9th grade.

Cooper's first day of 8th grade. 

This is the first time she's been in person, full-time since her 3rd grade year. Kinda nuts. She didn't attend one day of her 4th grade year and was on a hybrid of in person/homebound from 5th grade through 8th grade. When her new team met at the high school in the summer to talk about what her return would look like, we talked about starting with half days or something like that. I figured that with all the different classes, it would be easier to jump right in and then scale back if needed. And she did great! She is thrilled to go to school every day, all day. She gets ready every morning and anxiously waits for the school bus to come get her. The negative here is that the bus doesn't come get her until after the late bell rings at school. So, she has been late to school EVERY SINGLE DAY. Plus, we have a 15-minute range of when the bus is coming. Is that even normal? Does every kid standing at a bus stop have a 15-minute window of when the bus is coming? Our kids have walked to school - never taken a bus, so I don't know what's normal. At any rate, she is eager and determined to learn and is making so much progress in her reading skills! Her social skills are getting better, too. Here are some highlights so far...

Harlie turned 16 in September!

We went bowling to celebrate.

She went to the Homecoming dance.

We went to Pugoween (so many pugs in costume!)
and we finally put some effort into her costume.

It paid off! She won 1st place in the Group Costume category.

 

Her 9th grade school photo.

She got a prosthetic ear! It is the one on the left.
She can finally wear her hair down since she can tuck her hair behind that ear now.

She was in the One Act at school - with a speaking line!

She played in the All Star Basketball program,
which she LOVED.

Look at how tiny she is compared to her peers!

As you can see, she has been very busy in school! Going to watch her basketball games was pretty moving. For the first game, I spent the whole game trying not to cry. Okay, fine. I cried for the first 10 minutes, at least. There were just so many emotions all at once. I was sad she was out there, I was grateful she was out there. Then I felt that for all the kids and all their parents. Then I thought man, people are so lucky to be born well. Do people realize that? You can also see that the kids on the court aren't embarrassed or self conscious. They are out there enjoying themselves. They just seem so grateful to be there. I think we could all stand to learn something from them.  

So, overall, things are going well. We've had some nursing issues. This comes with the territory, I know. However, knowing doesn't make it any easier, of course. It is not easy to open up your home, your family and your hearts to other people. Considering Harlie requires a nurse to go with her to school, it is pretty imperative that the nurse be someone we can count on day after day. That nurse is her ticket to her education. Because of that, we found that a nurse provided by the county is the more reliable way to go. She has the same nurse each day and she rides the bus with Harlie to and from school. If she cannot go to school with Harlie, they will try and get a substitute. That is impossible in the home health nursing world. So far, they have been able to get a sub all but one time. So, that's great. We still have Caylee from time to time, but she does have her own career. We are lucky that she still wants to spend her free time with us, though. I've adjusted my work schedule to allow me to focus on getting Harlie ready for school. She still needs help bathing and washing/drying her hair. 

(As I mentioned earlier, I started this post two weeks ago. Right after I started it, her school nurse gave notice and left to accept a job elsewhere. Ahhh, it is so hard when she gets attached, and then they leave. We are back to substitutes for now.)

Anyway, we are without a full-time nurse for the first time in a really long time. I have to think that this means we are getting somewhere. Hopefully somewhere good. Harlie is 16 years old now. And she wants to live a more normal life. Her ultimate goal is to be able to go to school without a nurse at all. I know she can get there. But, it is really terrifying to think of her being in that big high school without someone looking out for her all day. But, just like with all things that Harlie is determined to achieve, we will figure it out. What she wants, is what I want. 

As far as how she's doing medically, well, that's another story - and honestly, the real reason I finally sat down to write again. 

In order to tell you, I have to go back a bit. Here's a summary...

April 13, 2021, Harlie had surgery at Boston Children's Hospital to implant prosthetic, titanium temporomandibular joints (TMJs).

April 18, 2021, Harlie was discharged (her tablet was stolen from her bed while she slept) and we drove home.

To write this post, I had to go back and refresh my memory on this time almost two years ago. Ugh. I don't know how we lived through this. And I don't know how we're going to do it again. MFer.  

April 21, 2021, After we got home, she just didn't stop bleeding from her incisions. It was a nightmare. She was readmitted to the hospital just a few days after being discharged from BCH.  She really should've been admitted sooner, honestly. I pushed it, hoping for it to stop on it's own. 

From May to August, some kind of growths appeared at both incisions (one on each side near her ears). We saw several different docs, but no one really knew what they were. They were not filled with fluid, even though they kind of looked like large blisters. I finally sent some pics to her ENT in DC and he said he needed to see her in person. So, we went to DC and he said they were abscesses from an infection. Either the constant bleeding a few months back allowed an infection in, or the infection was already there from the OR. I know everything is supposed to be sterile and all in ORs, but it would not be the first time she came out of an OR with an infection. Anyway, her ENT brought in an infectious disease doc (ID) and she is great. Our goal is to save her prosthetic TMJs and she was very supportive of that goal. 

We scheduled a time for Harlie to go into the OR and he removed the growths. They cultured the tissue and it came back with staph. They put in a PICC line and put her on IV meds for two weeks. But, soon after, the growths started growing back. Her ID doc put her on Doxycycline through her g-tube and she's been on it ever since. Her ID doc explained it to me something like this - the staph is sticking to the titanium TMJs. The staph knows that we are trying to kill it with antibiotics, so it forms a protective film/barrier over itself. The low dose of Doxy will hopefully eventually break down the protective layer and then get to the staph to kill it. 

Things settled down for a bit. We attempted to take her off the Doxy twice, but each time it looked like something was brewing. The second time was in June 2022. So, her doc said we should just keep her on it for another year. 

In November, 2022, a growth started growing back on the right side only, despite still being on Doxy. So the Doxy killed the bacteria on the left, but not on the right, I guess. In January, 2023, her ENT had to remove the growth. Within two weeks, I could see it was already growing back. This means that the Doxy isn't doing much, if anything at all. This is not good. After working with her ENT and ID for almost two years, they said we have exhausted all treatment options and it is time to speak to her surgeon in Boston. That TMJ has to come out. 

This is devastating. There is nothing good about this. There is no positive way of looking at it. I consider myself a pro at finding the positive view and there simply isn't one. This is only going backwards. This is re-doing an absolutely AWFUL surgery that isn't designed to be re-done. This is probably the first time we've gone into a surgery without having hope that she will come out better than she went in. Well, I guess that's not totally true. We hope that the infection will go away for good. I have to clean this infection area very often, and it hurts her. But, her function won't improve. Heck, her function could suffer for all I know. 

Here's what must be done: The surgeon has to remove her right TMJ and put in a temporary spacer. We take her home and let her heal. We have to make sure the infection is gone. I suppose they will make a new TMJ during this healing time. I don't really know. Then we return some months later and they will remove the spacer and put the new TMJ in. Did you see the pics of her getting her last TMJ? I don't know how we are going to do this again!!! And there's no guarantee that this all won't happen again! I can't even.

I don't know if I ever blogged about it, but that summer (2021) she ended up having to see a hematologist about her bleeding issue. She has some kind of platelet disorder. I don't remember exactly what. So, now, we need to consider that before going into this surgery. And we need to figure out a way for her to have her tablet and secure it when she is sleeping in the hospital. I can't believe this is something we have to worry about. 

Surgery is Monday, March 27. She will need lots of pre-op appointments, so we will have to go up sometime the week before. 

Tom's work schedule is booked. He has big projects starting, going, prepping, et cetera leaving no windows for time off. But he knows I cannot get Harlie to Boston alone. I don't know what he's going to do but I know he will figure something out. We managed to get my favorite Airbnb, so that's good. I do like knowing where we will stay - the layout, what we need to bring, how I'll walk to the hospital, stuff like that. This place is really comfortable - small but not too small and familiar, in a good way.  

I wrote most of the above two weeks ago, when we found out her surgery date. I've had a hard time getting back to this post to finish it. Since I started it, we got our pre-op appointments scheduled for the Friday, March 24. So, we will go up on Thursday. Luckily, that gives Tom a few days to get his project underway so he can be gone for a bit. 

I'm totally dreading this surgery. A few people have asked me if she'll be okay. I guess since I'm sharing anyway, I'll tell you the ugly truth. I always worry if she'll be okay. I never go into a surgery thinking it is no big deal. Never. I just try to hide my worry from everyone. No one wants to talk about that kind of worry anyway. 

On a lighter, more positive note.. Harlie is going to summer camp! YAY!

You might remember that our boys have been going to summer camp - Winona Camps for Boys in Maine for about six or so years. Well, Murphy aged out now. But, Cooper still goes. Every summer, Harlie has watched them go and wished she could go, too. I think she thinks that WE don't want her to go. But, that is so NOT the case! We'd love for her to be able to go! I've tried to get her into several special needs based camps - but the trach has always been a deal breaker. But, this camp is only for kiddos with trachs! 

I found out about Champ Camp from a fellow trach mom/family. Her daughter went to camp and graduated as a camper this past year. It looks amazing. So, I applied in January and had a phone interview. We talked over some things. I totally get that Harlie is a lot. I'm not blind to that. But, I also know that she manages it so well, really. Plus, I have the full support of the docs that know her best. We then had a zoom interview with different people and I completed a bunch of paperwork. We got official word last week that she was accepted! Hallelujah! 

The camp is in Indiana in June. Oh, what an adventure for Harlie! We are so excited for her! Hopefully, this surgery will go fine and she will heal up and be ready by June. That's the plan anyway. 

Okay, I'm just going to end this here. I'll blog more during her hospitalization. 

Thanks for all the love!

Christy xo

New Nurse

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

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

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

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

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

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

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

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

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

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

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

Thanks!
~Christy

Last day of Summer Camp

Friday was Harlie's last day of summer camp.  They invited family in at 11am for ice cream.  I found E's mom (the kid that told Harlie he loved her the other day) and told her that I heard her son was really good with my daughter.

She proceeded to tell me that E has challenges of his own and that he has Asperger's.  She then said that he is fascinated with all things science and he doesn't mean any malice.  Hmmm... I was just complimenting her son's behavior toward my daughter - the world malice never came to mind.

Then she continued with saying that ever since he got tubes in his ears that he thinks he's a Cyborg and since Harlie has a hearing aid, he thinks she is one, as well.  So, that's why he thinks they are best friends.

Cyborg.  Interesting.  But, frankly, I didn't care why he was nice to her - I was just glad he was.

Needless to say it was a strange conversation.  After she said "that's why he thinks they are best friends" I was speechless.  I wasn't sure if I was offended or not.  I can tell you that I kind of expected a simple "well, I'm glad they made friends" or something.  Heck, I was trying to give her and her son a compliment, and instead I think she just insulted my daughter!

So, let me get this straight - your son doesn't like my daughter because they're normal kids who just like each other - it's just because she is a science exhibit and a cyborg to him.  Thanks.  She really could have left well enough alone and let me think she was well liked and accepted by another.  But what good would that have served?  Seriously lady - learn how to accept a compliment and be nice to someone else yourself.  Really, it was almost as if she was saying, "look, don't get your hopes up - he only likes her because he's got some defects of his own." Even her body language was negative in nature.  Ugh.

So much for the positiveness from Thursday.  Oh boy.  Words don't describe how glad I am that Harlie doesn't know any of this!!!  And again, I find myself on that stupid roller coaster of emotions.

Later that afternoon, I took Murphy to Michael's to get some glue that was on Cooper's school supply list.  I said, "Murphy!  Come on, we're going to Michael's."  And he yelled down, "Who's Michael?"  haha

He didn't want to go, but I made him.  And when we got there, he was all wide-eyed and excited.  And a few minutes later he said, "This is the best store, EVER!"  Ahhh, so much to look at.  And have I really NEVER taken him there before?  I'm sure I must have.  At some point.  Certainly.  I'm sure of it.  Must have been years ago.  Oh well.

So, we're standing in line with people in front and behind us when we had this conversation:

Murphy:  Mommy, I don't think I want to be Snake Eyes for Halloween.  
Me:  Oh yea?  What do you want to be?
Murphy:  The Headless Horseman.
Me:  Okay.
Murphy (talking loudly and dramatically now):  But Daddy said in order for me to be the Headless Horseman, he'd have to chop off my head (with hand gestures, too).

Murphy, say it a little louder, I don't think child protective services heard you.

A few hours later, he informed me that he wants to be Dracula for Halloween.  And that we have to go back to the Halloween store to get him some new teeth (he was Dracula a few years ago) and he wants to get some rats this time.  Or maybe some rat eyeballs, so he can play tricks on people.

Then he said, "I feel like a dead zombie."

Huh?

It's still August and he's already becoming Halloween obsessed.  Fabulous.

I tried to find my post from long ago about Murphy's fascination with all things Halloween.  Every week when his class went to the library he would come home with Halloween themed books.  All year long!  Even through the Christmas season!  I finally had to ask the school librarian to limit his Halloween books to one per week (instead of two) and to persuade him to select something else.

Well, with school starting in just a couple of weeks, I guess I should come up with a few ways to use Halloween as a motivator to get him to do what we want him to do.  I've already warned him that the mornings are going to be pre-tty crazy around here for a while.  We really need him to be responsible and do what he knows needs to be done without us having to ask him repeatedly.  So, I took a wipe board and wrote a list of things he needs to do when he wakes up (brush your teeth, go potty, get dressed, go downstairs, eat breakfast, put on shoes, get lunchbox, etc.) and can you believe that worked like a charm the very next day!

He's now earning (and occasionally losing) marbles in a small jar until it fills up.  When filled he can go pick out some Halloween stuff.

Maybe doing that stuff now will help us with school transitions.  Which, speaking of, I have some venting to do....  that post will be soon.

Also - since I was in a crummy mood about that other mom - those flowers were even more appreciated that day!  Talk about good timing!  Thank you again, whoever you are!

Thanks,
Christy

Camping Out

I did something on Friday night that I never thought I would ever do.

I camped out - in line - so Harlie could have a spot in a summer camp provided by the county we live in.  The camp is two weeks long, Monday through Friday, 9am to 12 noon, for just $30!!!  And it is right across the street from my neighborhood.

Every year, in mid-March, the county has summer camp registration.  Some of the camps have on-line registration available (like Murphy's Summer Blast program - which is FREE!!!). But some camps require walk-in registration, like Harlie's Kinder Camp.

Registration starts at 8am.  But the line forms 12 hours prior!!!!  NO JOKE!

Last year, my friend Jennifer signed her daughter (Kyleigh) up for one of these camps.  She arrived to get in line at around 3am (I think).  But, she did not get her first choices for location.  Which was a bummer.

Some other friends of mine camped out for the night.  And to be honest, it seemed RIDICULOUS to me.  And there was NO way I was going to do something that crazy.  Last year, Tom was out of town, so there was no way I could do it anyway.  But, luckily the Summer Blast programs are available to register on-line.  But it fills up in minutes.  It's FREE, afterall.

So, registration was past, and summer arrived.  And a few times Harlie and I had to take or pick Kyleigh up from her camp.  Oh, Harlie was so sad to not be able to stay and play with her!  Everything looked so fun!  So, mental note:  perhaps I should re-consider my feelings toward registration.

Fast forward to last week, with registration time quickly approaching.  Jennifer tells me that she is not making the same mistake as last year.  Getting there in the wee hours of the morning did not work out so well.  So, her plan this year?  Get there super early, set up a tent, and make a night out of it.  She got a babysitter for the night and her husband was going to camp with her so she wasn't alone.  Hmmmm.

And that's when the words I never thought I would speak, were spoken.

Maybe I could camp out with you so I can register Harlie, too.  

ACK!!!!  Even as I spoke, I could feel my insides cringing.  It is COLD outside.  And we would be completely exposed to any crazy person walking along wanting to inflict harm on someone not locked safely away in a house!

But then Jennifer told me that the police station is in the same parking lot and there are police officers coming and going all night.  She said, "I'm pretty sure we'll be okay."

Oh, alright then.  Mental note to self:  look into getting that taser gun...

So, her husband was super happy because he didn't have to do something so stupid as camping out in the Public Safety (I forgot that's actually the name of the building, now it seems even funnier) parking lot in 30 degree temperatures.  No, that would be ME.  And Jennifer.  And she didn't have to pay a babysitter.  So, I was doing a good thing.  For everyone.  Really.  

Friday night arrives and plans are set.  Jennifer will go and set up at 8pm and I will get there as soon as the kids are in bed.  At 7pm, the phone rings and it's Jennifer.  She's already there!  Tom said, "Tell her the Grateful Dead stopped touring 10 years ago."

Ahh, too funny.

And the best part?  SHE'S FIRST IN LINE!  It really cracks me up - this whole situation.

So, I got there around 8:30ish.  Brrrrrrrrrr!!!!

Tents were set up this way (that's Jennifer by the way)...

And that way...

Jennifer's friend, Monica (she wouldn't let me take her picture), came to bring some hats and gloves and to have a drink with us.  Shhhh, don't tell anyone.  I don't think you're supposed to drink on county property.  

Just hanging out, having fun...

...freezing our asses off.  

Going to pee was no picnic, either.  

I slept in long pants, socks, tennis shoes, a tank top, two long sleeved shirts, a heavy fleece jacket, a scarf, a hat, gloves, a North Face sleeping bag (rated for low temps), AND a fleece blanket.  Comfy.

Jennifer was so cold during the night that she put her gloves on her feet.

Jennifer provided the chairs - camping ones (really nice!) that recline.  Unfortunately, I had to have most of my body weight on the upper portion of the chair to keep it in the reclining position.  If I straightened my legs out - the chair started to go in the upright position.  Ugh.  

The other negative things about the night were:

1)  the dude that was second in line brought a television and watched old shoot-em-up movies.  So, it kinda felt like we were in a war-ravaged country.  Not really what I was expecting.  At about midnight, Jennifer looked out the tent window and he wasn't even watching it!!!  So she asked someone to turn it down.  He finally turned it off a few minutes later.  Seriously, you can't go one lousy evening without watching television??  Loser.  Luckily, this is the last year for summer camp for his kid.  So, he won't be back.  And yes, this means that I will be.  Yay for me.

2)  At about 11:30ish the party people showed up.  You know there's always one group that thinks they are so funny that everyone wants hear them.  Well, on our way back to the tent from a little walk to the woods, we met them while they were unloading.  Geez.  They clearly make this an annual "event" complete with a full-on poker table, grill and generator.  And no, they never slept.  Yay for us.  

3) I pictured a bunch of moms hanging out in line, chatting.  No.  Most of the line was full of dads.  And boy did I feel STUPID.  Of course all the smart moms send the dads to camp out in the cold.  But, no, not us.  Next year, we're changing things up a bit.  That was an event that Tom would totally love.  He would know everyone in line within minutes.  Yay for him.

This is how long the line was in the wee hours of daylight on Saturday morning:

It was during this time that we smelled breakfast cooking.  Yum.  Jennifer ran to get us some fast food biscuits and caffeine.  

I know it's hard to see... but trust me, this line was LONG.  An aerial shot would better illustrate it.  And look at all the people that just sat in chairs - with no tent - all night long!  Now they are crazy.  Not us.  Nope.  Them.

While taking down the tent and putting stuff in my car, I met some people in line.  They saw that I came from up front and asked me what time I got there.  So, I asked them the same -  2:30am.  And they were far in line.  No thanks.  I told them there is no way I would leave my nice warm bed, to wake up and go sit in the cold at 2:30am.  It was better for me to just start out the night like that.  Granted, I didn't get much sleep, but still.  

Finally, 7:55am arrived, and we were all in line, ready to register!  It really was funny.  Funny conversations, funny situation.  Then an employee came out and asked us to follow him.  We walked forever around in there (trying to make the line as long as possible inside the building so people could come out of the cold - isn't that nice?).  Then we got to the registration room.  Yay!  

It was hysterical because a guy was waving us back while walking backwards in front of us.  He said, "We will not begin registration until 8 o'clock.  GET READY PEOPLE!"  He was talking to the employees - who looked extremely frightened.  And I don't blame them.  

There were 15 people poised and ready at lap tops.  Jennifer and I went to spots 1 and 2 and I had to bust out laughing.  All this for summer camp?  Funny!

The lady that was helping Jennifer said she had knots in her stomach, she was so nervous.  She said they were afraid that they would mess things up and our kids wouldn't get in after we spent all night in line.  I highly doubt she's getting paid enough to compensate her for that kind of stress.

This is the dude (in the red coat) that watched, what I can only assume, was Rambo...like 3 times.

See that line?  And that was just a fraction of it!  I really wish I could have gotten a photo to truly illustrate the craziness of it all.  And - as if that isn't enough people - this was just ONE registration location!  There is another one on the other side of town.  But one could only assume that they are registering for locations on that side of town.  

So, in summary, I got Murphy all signed up for Summer Blast, and Harlie for Kinder Camp.  And Jennifer got her son signed up for an older kids camp and Kyleigh for Kinder Camp.   All our first choices, of course.  

Yay!  

Then we went home.  The end.

And people say I'm crazy for wanting a dog...  No.  I'm just CRAZY!!!  And I wasn't before I had kids.  Just sayin'. 

Oh!  And the next morning Tom and I realized that was the FIRST night that I have been away and Tom was here with the kids alone.  Ever.  Now that's just sad.  I predict some girl's weekends in my future.  

Thanks,

~Christy