Post-Op Day 2, TMJ Reconstruction

Hi!

Well, we got moved to the cardiac floor last night.  Usually, my take on being on the floor is that we are better off at home.  But, being so far away makes that impossible, well and the drain line, too.  There is NO way she is ready to go home.  Hopefully things have progressed in her health that her lungs seem to not take as much of a hit post operatively as they have in the past.  It has always been her lungs that have prolonged her ICU stays, so by the time she was ready to leave an ICU, she was essentially ready to go home and have one on one care by us and/or home nursing vs. one to three or four or whatever ratio that particular floor has (depending on which hospital we are in at the time and how busy they are).  

Anyway, the new room is super small (but private, so that's good).  When Harlie got over here, she was really complaining of pain.  Turns out she had not gotten Dilaudid in like 8 hours!  So much for pain control.  So, I told the night nurse (who was awesome) to please put her on a schedule and not to count on Harlie to tell them when she hurts.  It is really frustrating to have to constantly repeat yourself. Harlie already has a high tolerance for pain/discomfort and if you wait till she's crying, then you pushed her too far.  So, they took care of that and she seemed to get some sleep over night. 

Here's what she looked like when we got in this morning...

Oh, my sweet girl! I feel SO bad for her!  

Her ear is still bleeding (from inside), so she still cannot wear her hearing aid on that side.  The BAHA can be cumbersome in bed, so she keeps taking it off.  At any rate, I told her nurse that she might have to pull her mask down when she's talking to Harlie so that Harlie can have a chance to hear her or read her lips.  That muffled sound when you talk behind a mask is impossible for her to hear. Oh, I feel so bad for the hearing impaired right now!  

Anyway, the team here said pain management is their priority for her.  So, now she is on a schedule of all kinds of stuff.  Hopefully that will help.  

Her surgeon came by to check on her.  We talked about what needs to happen to get her home.  That drain line has to come out, all of her IV meds have to be changed to oral meds (through her g-tube) and we have to be able to manage her pain on oral meds.  

I haven't even told you about our logistical challenges for this stay...

The last few times we've come up here, we've been able to get the same Air B&B.  It is a mile from the hospital.  And it is super cute and comfy for us. And being able to know what to expect is really nice when you're going through a stressful time.  

Well, we had our virtual pre-op appointment with her surgeon in February to get more details about pre-ops, surgery, post-op, etc.  As soon as we talked with him and got more info about how long we'd be in Boston, we scheduled our Air B&B.  But, it was only available Sunday through Wednesday.  So, we had to find a different place to stay from Thursday on.  We tried to find a different Air B&B for the whole time, but that wasn't as simple as you'd think.  Everything is harder (and less available) with so many people having to change their way of life because of Covid precautions.  So, we got a different place Thursday to Monday.  

Of course, we had to get out of our favorite Air B&B by 11am and we couldn't get into the next one till after noon.  So, we packed up and left our stuff ready to go and came to the hospital early.  Then Tom left to go get our stuff and move it to the the new place.  He called me to say that we didn't read the fine print.  It was terrible and dirty.  And the bathroom was down the hall, shared by who knows how many people. 

Well, I've been there, done that.  After I had Harlie, I had to leave the hospital and go to the Ronald McDonald House and share a bathroom there - postpartum!  Um, never again. Life is too hard right now to deal with that on top of everything else.  So, he left and checked into a hotel.  

He's also trying to figure out how we are going to get home.  There used to be several direct flights per day between Boston/Richmond.  Now there's one flight per day.  Some days there are none!  Some days the flights are only at 6am.  There is no way we can make that work. On Sunday, there is one flight at 5:45pm.  So, maybe, if the stars were to align, she could be discharged that afternoon, and we could do that.  Of course, he can't book the tickets until we know for sure.  And it was a full flight on the way up here, so who knows if we could get on that flight.  

So, we thought maybe driving home would be less stressful. Plus, it is awful having to fly and go through all that airport crap post-op from craniofacial surgery.  People are already afraid of people. Even if you look perfectly healthy, you are treated like you have the plague. Then they see us with our swollen, bruised faced kid... it is just hard. I'd really rather not deal with all of that. 

Anyway, renting a car - not a big deal, right?  Haha, not so fast.  We started looking and even at the airport, most of the carriers said they had NOTHING available.  Nothing.  WTH?  I guess when you select one way rentals, maybe that makes it more difficult?  He found one, but we can't even reserve it because we really don't know when we are leaving.  So, we are just going to have to wait and see and hope that it works out.  After all the trips up here through the years, none have ever been this stressful with logistics. 

So, back to Harlie... she is getting more swollen and bruised by the hour.  I swear to you - the pictures do not do her justice.  I see her face, I wince, I take a picture, I look at it and I'm like, nope.  That's not what she looks like. She looks worse!  

   You can see more blue coming in...

And her mouth, lips and around her chin is more swollen than before.  She could talk a little before, but now, it is almost impossible to understand her.  Her lips can't move at all.  And her airway itself sounds swollen - she has hardly any sound at all.  She is signing to us and I am feeling pretty rusty on my sign language skills.  But, she is good and somehow gets me to understand her.  She asked me (in sign) why her face is so big.  And then asked me how long till it gets smaller.  

She has only peed once today so far (and it is now 6:15pm).  When I made her get up and go earlier, I forgot about the mirror in the bathroom.  Not that I could do anything about it.  But, she looked at herself in the mirror and started to cry.  Oh, she breaks my heart.  

Okay, well that's it for now.  I'm tired.  And I just had a conversation with respiratory therapy about their humidity system for Harlie's trach (it isn't working for her) and I'm feeling frustrated.  I don't have the energy to explain that right now.  What I'm feeling is a lot of frustration over trying to make it easier for Harlie to breathe.  How is it right in the Universe that we should have to fight for that? Over and over.  Fuckin' A.  

Sorry.  I wish I could be more positive right now.  Maybe tomorrow.  

Thank you for the love, the support, and all the kind words.  We appreciate it more than you know. 

Much love,

Christy xo

Surgery Day and Post-Op Day 1

 Hi,

Thank you for all the kind messages, love and support!  Y'all are the best!  

Yesterday, we had to be at the hospital at 6am.  It is still pretty chilly in Boston, so we thought about getting an Uber to the hospital, but ultimately decided just to walk.  It is exactly one mile, and the walk does us well.  I asked Harlie if she had any questions about the surgery and she said no.  I struggle with how much to tell her prior to a surgery.  I don't want her to worry about it too much.  She knew it was surgery on her jaw.  And she asked how long the metal would be there.  I said, forever.  Then she said, "You've got to be kidding me."  Haha!  It was awesome to be able to tell her that there will be no metal that she can see.  All of it will be under her skin. That was horrible for her last time.  But the good thing was that this surgery seemed less horrible in comparison.  

Getting all ready for the OR...

Amy Vinson is her anesthesiologist and we love her.  She actually rearranged her work schedule this week so she could be on Harlie's case.  How awesome is that?!  And she gave me an awesome question to ask the next anesthesia pre-op person I get.  It makes me laugh every time I think about it.  I hope they have a good sense of humor! 

They took her back to the OR right on time and we went to go get some breakfast. They assign you to a pod in the waiting room and we went there and hung out for the rest of the day.  We watched Netflix on my laptop.  They call every 1.5 hours or so to give us an update on what's going on in the OR.  Honestly, I don't need those updates.  Haha!  It is kinda gruesome to think about the details of what is actually happening in there (he's cutting the right side now), so I'd really rather not know.  

At some point, I posted this pic (waiting in our pod) on Facebook and my friend, Laura, had some fun with it.

She shared this one...

Then this one...

And then she outdid herself with this one...

Hahahaha!  It has made me laugh out loud every time I have looked at it!  The edit to Tom's shirt is the best!  It is even funnier because Tom does NOT 💗 NYC.  Hahaha!  So, thank you, Laura!  Seriously, you made our day so much funnier!  I'm laughing as I'm typing this and Tom just asked in an irritated way, "What are you giggling about?"  I said, "These pictures."  And then he said, "Well, it is annoying."  Nice.  Honeymoon's over, people.  

Anyway, Dr. Resnick came out sometime around 2:30ish, and told us that the custom joints went in great.  He looked pretty hopeful.  He said he was able to really pull her jaw forward and get it in a much better position.  The only concern he has is about her skin.  He said it is really tight, stretched out in this new position.  So, we'll see how that goes.  He also said she has a loose tooth on the bottom front.  Those are her permanent teeth, so this really bothers me. I'll go into more detail about that in a minute.  There's more to that story.  

He also said that Dr. Vinson was curious to see the difference in her airway after pulling her jaw forward.  So, when he was done, she wanted to scope a little, to see how it looked.  He said she was still in the OR and they would let us know when she was done and Harlie was ready to go upstairs to the CICU.  

I try to make jokes when I can (and probably when I shouldn't), but the reality is that this is really, really hard.  It hurts my stomach to hear and think about the details of what he actually had to do during surgery.  The cutting of her jaw bone, the screwing and attaching and stretching, etc. And it isn't just THIS surgery.  It is all of them.  They are all so brutal. It just makes me so sad for her.  And even though I believe our end goal is so important (an airway for crying out loud - I mean, it seems like that shouldn't be asking too much) I still worry that it is asking too much.  And, then I start to think about the reality of recovery and how hard that is on all of us.  Ugh.  It really brings me down.  It isn't like we are starting fresh for each surgery.  Every time we go in to the hospital, I am carrying all the past hospitalizations with me.  It just gets heavier and heavier each time. 

The waiting room liaison called into the OR and they said it would be a while before they would send her up to the CICU. So, Tom made me go outside and walk to a restaurant for a quick beer and snack.  

He knows me so well.  And it is good to have a change of scenery and get some fresh air.  While all that heavy stuff is still there, we can't focus on it for too long.  We have to rise above it and appreciate the good.  And yesterday afternoon the sun was out and it wasn't freezing and the beer tasted good.  And I just have to go back and look at those photoshopped pics and then I laugh out loud again.  

Dr. Vinson texted me and asked where we were.  I told her we were drinking a beer.  Haha!  She said she had some stuff to do, so she said she would meet us in the lobby in a bit.  So, we finished up and headed back to talk to her.  

First, I LOVE that she was curious about Harlie's airway improvement and wanted to see for herself right then!  It is clear she's invested and really cares!  And, it kinda makes me feel supported in our decisions to keep fighting for this airway.  

Anyway, she said she saw more than she's seen before (can't remember the parts she named that she saw).  She said she could've gone farther, but she didn't want to push her luck and she didn't want to disturb that loose tooth.  So, she stopped.  Regardless, I think what she was able to see and do is already a really good sign!  After talking with her, we headed up to Harlie's room.  

Honestly, she looked better than I was expecting.  She did lose some blood during the surgery, so they gave her more.  That is a drain line you see in the photo.  

Okay, back to her teeth... 

Back in August 2017 (you can read about it here) when she had her Ankyloses release surgery (her jaw and base of her skull fused together, and cutting that apart is what brought her to needing that emergency trach) as part of that whole procedure, they had to remove a bunch of teeth.  Some were deep in her bone, laying sideways and were never going to erupt.  The removal of those teeth basically disrupted the support for the teeth that had come in.  And within a few days she lost more teeth - including some permanent ones.  Something about her losing her permanent teeth at 11 years old really bothered me.  I mean, c'mon - can't the girl just keep her freaking teeth?  WTH?  Just to put it in perspective, these are the teeth I'm talking about...

So, after I let her doctors know how upsetting that was to me, they put a splint on her bottom, front teeth to stabilize them.  The splint looked like braces.  And they stayed there from August of 2017 till March 2021.  It was very hard for her to brush those bottom teeth and after so long, it seemed like it would be okay to finally remove the splint, which was put in as a temporary measure to allow them time to heal and harden in place.  So, after her surgery in May 2020, I asked them if we could remove them.  They said yes. 

It took a while to get it scheduled - should her orthodontist do it or her dentist?  Luckily, they know each other and spoke about it.  Her dentist said she wanted to do it so she could clean those teeth right after removing the splint.  But, nothing is ever easy for Harlie.  First, an orthodontist didn't put on the splint/braces.  And the material they used was different - it was thicker wire, braided and they put a lot of composite on there - they wanted it to be really strong.  So, after over an hour, she had to stop.  The air thing they use to remove the composite material was tearing up her gums/lips and she was really struggling.  When big tears started coming down Harlie's cheeks - while she was still being so cooperative - her dentist said she just couldn't put her through any more at that time.  So, we scheduled another time to pick up where she left off.  Then that day we had a snow storm, so her appointment was cancelled.  We rescheduled again (March), and her dentist was able to remove it (Hallelujah!)  and clean her teeth.  

Now Dr. Resnick said that at least one permanent tooth is loose again.  Ugh!  That splint came off less than a month ago! So, they are going to have to put another splint on them.   But he doesn't want that to happen right now.  She needs to heal a little bit more.  Then we are probably going to have to figure out a more permanent solution.  It is stuff like this that wears me out. Well, that's stupid.  All of it wears me out.  But, these "little" things are never little - and they usually involve a lot of appointments and work. Hopefully she won't lose it before they can get another splint on. 

Anyway, after spending some time in her room (Harlie slept the whole time) and with her nurse, answering questions, etc. we left to go get dinner.  

It is now 6pm on Post-Op Day 1.  I have been working on this post all day (with lots of interruptions and one small nap - don't judge, haha).  

Today has been okay.  As soon as we got in this morning, she signed that she hurt.  She really didn't even need to sign it - we could tell just by looking at her.  Poor thing!  It kills us to see her in so much pain.  She's on a bunch of stuff through her IV, so that's good.  But, a kiddo who has had as many surgeries as she has had - builds up quite a tolerance to meds.  And they always have to give her more than you'd think to help her.  That's where being in the cardiac ICU really helps - they get that.  

She asked for her tablet (she's having a hard time speaking right now, but she gets her feelings across anyway) and immediately put it on selfie mode so she could see what she looks like.  That is always so hard to see.  We just keep reminding her that it is only temporary and each day will be better than the one before.  And that we love her and we are here with her.  

Her face isn't as swollen as it has been in the past.  But, it is more bruised.  You can see the bruising under her eyes and down her cheeks.  

ENT came by and changed her trach.  They put in a cuffed trach for the surgery since she has to go on a ventilator.  And then they change it back to an uncuffed trach the day after.  The manipulating of the trach ties seemed to hurt her (the incisions are right there).  Plus, she has that drain line in her neck, so all the movement was hurting her.  They also looked in her ear (she was communicating that her ear hurt) and it was bleeding some.  He said that the temporomandibular wall is shared with her ear, so any manipulation can cause her ear to bleed.  It can also cause shifting, and sometimes they have to put something in the ear canal to keep it open.  But, he said he didn't think that was necessary, so that's good.  The negative with any ear issues is that she can't wear her hearing aid.  So, that's a bummer.  

Since she was up and already bothered, her nurse pulled her Foley catheter.  And she took out her arterial line.  After all that, she wanted to sleep.    

 

Harlie prefers her sleep masks, so I brought a couple...

Since she was sleeping soundly, we went and got lunch.  When we got back I was so tired.  There is something about a hospital room (the hum of the equipment maybe?) that makes it so easy to fall asleep.  So I took a little nap.  

Harlie slept for a few hours, so that's good.  

Overall, today has been okay.  Once you get Harlie's pain under control, she really seems okay.  I mean, she's not happy.  But, she's not mad.  I asked her if she was mad at me earlier - because her expression told me she was mad.  But she shook her head no.  I think she just can't really change her expression right now.  She tried to drink some water, but that was really difficult since she couldn't really move her lips or anything.  Poor thing.  

Okay, I'm going to wrap this up now.  I'm going to include a pic of her drain line, for those of you that are curious.  I'll just add it at the bottom.  

Thank you for all the love!

Christy xo

Pre-Op

Hi!

We had a long day at the hospital today. Surgery time tomorrow is 7:30am and we have to be there at 6am. 

We had a pre-op admissions thing - so many questions. I can tell I've done this too many times.  I am starting to lose my patience.  I really wish after so many surgical experiences we could earn some kind of card.  Or at least some kind of alarm on her medical record that says this isn't our first rodeo - it is our 70th or so.  For real.  I can't believe I have to be treated the same as a person who is preparing for their kid to go under anesthesia for the first time.  The anesthesia part of our day feels like a joke.  He actually said they take her back and put her under using her trach and then they would give her an IV, that way she won't feel it.  

Huh, so when she's under anesthesia, she can't feel anything?  Interesting. He also said they would be there with her - the whole time!  Whew, that's a relief!  Thanks, doctor. 

I have to sit there patiently and politely, listen to him and let him do his thing. Probably because there is some policy that says he has to - regardless of how many times the poor parents have had to sit there and listen to the same thing.  And I'm not poking fun of this particular person.  Or first timer parents.  Although I did feel bad for him.  My face might've been talking, even though I wasn't.  Ugh, I promise I don't want to be crappy.  I know we are not the norm.  I'm guessing most parents aren't career hospital parents like us.  

He asked me/us if we had any questions.  He had to ask Tom twice because he wasn't even listening. Haha!  I probably sound horrible, but I can't help but laugh.  It feels like when you're on a plane for the 100th time - and you can hear them doing the safety procedures in the background.  You've heard it all before, how much focus does it really require?  Anyway, I thought to myself, when was the last time I had a question for anesthesia?  Years.  Like 14 of them.  I'm pretty sure I've never asked a single question.  I can promise you I've never asked if they are going to just leave her there while they go eat breakfast.  Although, tomorrow I should ask our anesthesiologist (we will have the same one we've had since August 2017 and we're buds now, haha) for some "good" questions I could ask the next one at her next surgery.  Something very doctory - something hard.  Haha!  That would be so funny.  Ahhh, medical burnout humor.  Okay - for real though - no sarcasm in this statement - I fully trust that the anesthesia team is fully capable of taking care of her.  This is why I joke and poke fun.  All in good humor and to keep me from losing my shit.  Haha!  

Anyway,  she got an echo.  

Darnit, she still has the same heart defects she had last time.  Nothing new there.  And she had to have labs done, which actually was the best it has ever been.  Whew, this girl can put up a fight!  But, she was way better today (and the nurse was amazing) and I hope that's a good sign for the future.  

This is her feeding herself, just because.  She's really so cooperative and patient.

She had to have a Covid test.  Funny, they don't test if you've had it within 90 days.  Her positive test was like 92 days ago.  But, she didn't complain.  Anyway, that must have been negative because they say they only call if it is positive. 

She also got an EKG and had her pacemaker interrogated.  She has about 16 months left on her pacemaker battery.  Alexa, remind me to follow up on that in ten months...  At the end of the day, a nurse came in to do a "trach safety check."  Okay - I will admit that I had to talk to myself and tell myself not to take it personally and be nice.  She asked me all these questions about Harlie's trach size, etc. and filled out this form.  I know this form well.  It gets completed and posted at her bedside - at every single hospitalization.  Anyway, she told me with a real energetic and excited attitude, that I am supposed to carry this clipboard around with me "just in case the trach comes out while you're here, this will help in an emegency."  

 

Wow.  So, that form on that clipboard will help me reach in her bag, that I have packed appropriately and carry with me, grab the spare trach and put it in her neck?  Fascinating.  I don't know how I've managed to keep her alive without it.  

You know, the root problem (pretty much in life right now) is that you - meaning anyone - is assumed to be too stupid to take care of yourself.  

That form isn't for me. I'm not the one that needs it.  I already know all that information.  That form is for nurses/respiratory therapists who need that info to properly stock her room with the supplies she might need in an emergency.  So, I don't need to be carrying it around with me.  Especially on a clipboard! They will fill one out tomorrow.  But, what did I say to this young lady who seemed so excited to "help" me?  Thank you.  Serenity now, insanity later. 

Anyway, Harlie came downstairs one morning a while ago and found Tom and I doing yoga to a you tube video.  She took over my mat and did the rest of the yoga session in my place. I didn't argue - I don't love yoga.  Since then, she sets her alarm to get up early and do her yoga.  She figured out that she can't hear her alarm in the morning.  She's tried several.  So, she got this one from Brandy (her nurse) and now she puts it to her face so she can feel it alarm.  I love how she problem solves and goes on about her day like it is no big deal.  

Well, that's it for tonight.  Tomorrow morning will be an early one. 

Thanks for the love!

Christy xo

Back in Boston (for TMJ Reconstruction)

Hi All,

I hope you are all doing well.  We are back in Boston for Harlie's I-don't-know-what-number jaw surgery.  Part of me wants to write for her "last jaw surgery."  But, I have no idea if that is the case or not.  This surgery is basically like a hip or knee replacement - but for her TMJs.  

Just a few more details for those interested...

She had a CT scan months ago, and they used that to fabricate these prosthetic TMJs specifically made for her jaw.  Here are some pics of what they want to do.  I say "want to do" instead of "going to do" because past experience has taught me that things don't always go according to plan.  And part of me is afraid that her jaw has been receeding since her CT scan, and that the custom joints aren't going to fit anymore.  

One of the complexities with her jaw is that while we stretched her jaw bone, called jaw distraction (by breaking her bone, which forced new bone growth, then repeated the breaking every day for several weeks) the soft tissue/muscle, etc. in her jaw might not want to stretch like that. Or that quickly.  And the bone can basically collapse under the tight pressure of the soft tissue.  Think about how braces work, constant pressure, which then changes the bone structure.  

While I feel I'm generally an optimistic person, there is definitely a part of me that is preparing for disappointment.  When we started to focus on her jaw surgically (she was less than two) I would NEVER have guessed we would STILL be working on it twelve years later.  Funny, her very first jaw surgery was done with the intention of avoiding jaw distraction surgery.  Several failed jaw surgeries later, and we had to do one anyway.  She's now had two jaw distractions.  

So, while I want to have hope, I can't forget all the disappointments and re-strategizing that we've had to do over the years.  My brain and heart are often in conflict.  It is super fun to be me.  😉

Anyway, her surgeon is going to cut her jaw like this...

And then move it into a better position like this...

And then secure it in place with the prosthetic TMJs.

The goal is not only to move it left - but more importantly, move it FORWARD.  Moving her jaw forward is what will give her a better airway.  And a better airway is our ultimate goal.  A better airway means that she could breathe without the need of a tracheostomy.  And while I am thankful that the trach has given her life, I long for her to experience life free from it.  

This surgery is our Hail Mary.  There have been zero talks about options if this doesn't work.  I don't think there are any.  So, it feels pretty weird to be in this position.  For so long we have hoped for a trach free life.  To think we might be at the end of the road is really scary.  How is this going to end?  Will it be successful?  Or not?  I'm told we should have a good idea in six weeks.  Ha, my brain is doing it again.  I'm remembering all the times I was really happy about a sign of a better airway.  Like when she could wear her speaking valve a few weeks after surgery in 2018.  But that was it.  No improvement after that.  So, what if in six weeks things look great, but then over time it gets worse again.  Yeah, so fun to be me.  

Anyway, here's Harlie taking a selfie of us at the airport. 

We are now settled in at our regular Air B&B in Boston.  The owners live upstairs and they have a little girl.  When we got in there was a box of chocolates and sweet note from the little girl saying good luck and get well soon.  Awww!  Makes me feel "at home" here!   

Tomorrow we have a long day of pre-op appointments.  And then surgery is Tuesday.  We don't know what time yet.  And we really have no idea what her recovery time is going to be.  

For 13 years I was unable to work consistently.  I have worked part-time for a long time, but I really took the term "part-time" to heart.  I have worked when I could - sometimes five hours a week, sometimes five hours a month.  Sometimes there were months I couldn't go in at all.  

But, the past few years have been pretty quiet medically speaking.  So, in January 2020, I committed to working more consistently and working about 20 hours per week.  Perfect timing for a pandemic when your kids can't go to school and you can't work from home.  😑

Anyway, where I'm going with this is that it is super weird to leave my job and my responsiblities there for an unknown period of time.  Granted, my job isn't critical.  But still, no one else is going to do my work while I'm gone.  So, it just feels... weird.  

Now I am appreciating the position that Tom has been in for so long.  He has no say in when her surgeries are scheduled and he has no idea what his work schedule is going to be like at the time of her surgeries.  He has no idea how long he will be away.  He doesn't know if we are going home together, or if he will have to go home alone and then come back and get us when she's ready.  And when he has had to return home without us - he's had to focus on his work while he was worried about her in the hospital.  And he's been doing this for 14 years!  I think it is amazing that he has done this - with little complaint - and he is still able to do his job and do it quite well.  Love him!

Well, that's it for tonight.  I will write more tomorrow.  Thank you so much for thinking of us!

Much love,

Christy xo

Our Experience with Covid

Hi.  I can't believe I'm going to do this.  But, I feel like not sharing isn't right, either.  So, here goes...

This is our experience with Covid.  I know it might not match someone else's experience with Covid.  And I can't help if our experience is different, better, worse, etc.  That's life, we all live our own experiences, and from that come our own unique perspectives and opinions.  

Early December

Right after Thanksgiving, one of Harlie's nurses found out that she was exposed to a positive Covid relative days prior.  As soon as she was notified, she went for a test and she was positive, too.  She had worked in our home with Harlie for two days - during her contagious time.  My whole family went on quarantine.  

So, just to go back for a sec... Since Harlie came along, we have tried to avoid her exposure to things that can make her sick.  We were washing our hands before instructions got plastered by every sink.  Thanksgiving 2019, when she got sick and was in the PICU for two weeks, we didn't ask where she got parainfluenza, or who gave it to her.  No one was wearing masks (or apparently, washing their hands) and no one really cared what could happen if they sent their child to school sick.  Heck, even adults have felt like they couldn't miss work if they were sick.  Trust me, no one wants what you have - stay home if you're sick.  This was true for 13 years - prior to Covid.  We have done what we've had to do to keep Harlie safe and happy.  We had to stop sending her to school because we couldn't risk anymore sickness.  We didn't ask the school to make it safer for her.  And we have had to think about her happiness while keeping her safe.  You can't pick one.  You have to do both.  Well, we want to do both, so we do - successfully, in my opinion.  The general public/government has picked one and made that the number one priority, and the same level of concern for everyone.  As you can probably tell, we don't agree with that way of life.  We have managed to make it work.  We know it can be done.  And that's with a medically fragile person in our home. 

Anyway, after the exposure we tried to avoid finally happened (it was inevitable) I had a virtual meeting with her pulmonologist.  He went over a plan of action should Harlie start to show any symptoms.  He said that we just don't know what it could do to her.  She has three lung lobes instead of five.  And those three aren't the healthiest of lungs.  She has heart disease.  She has a compromised airway.  Who knows what this could do to her?  But, he also told me that none of his patients (all with lung issues, obviously) have gotten Covid.  They have had other viruses, but not that one.  I found that comforting.  He also gave me statistics for kids under the age of 18.  And since Harlie, I have become a numbers/odds person.  If you look at the numbers/odds - kids are SAFE from Covid.  Period.  There are FAR more threatening issues to that age group.  The average 15 year old should not be fearful of dying from Covid.  And if they feel that way, society has made a huge mistake. 

Our plan was to take her straight to the emergency department so they could take an xray of her lungs and assess where she was and how we could support her.  He said he didn't want to get behind in her care, should she get it.  

Maggie's (my niece) wedding was the following weekend and both Harlie and I were bridesmaids in her wedding.  We couldn't go.  It was heartbreaking.  We are all very close and it felt so wrong to not be able to share this moment with them and my entire family. They live streamed it and we all watched from our couch.  I cried the whole time.  We all love Maggie and AB.  And we are a family who loves a party! Missing their wedding was a true loss.  

They were so sweet to come over that night for a socially distanced visit/beers in our driveway.  Harlie and I put on our bridesmaides dresses and Tom put on his own hand crafted haz mat suit so he could hug them for us.  

Well, we didn't get it.  We all tested negative and we were free after our two-week quarantine.  Side note - we have such awesome people in our lives and we had friends go to the store for us and even go pick out and bring us our Christmas tree!  How amazing is that?! Love them!

Thanks, Geoff and Bethany!

Christmas

My birthday is on Christmas Day.  As you can guess, it is a crazy day and it is not about me.  It is hard to compete with Jesus and Santa.  Haha!  So, a few years ago we started celebrating it on Christmas Eve with a few friends and family.  This year had to be different, of course.  So, we had a much smaller group this time.  And they were all people that were already in our bubble.  

However, one of our friends in attendance ended up testing positive a few days after.   The day we learned of his positive test, we had gone to the Blue Ridge Tunnel with the kids and friends.  We rode in the car together, we ate lunch together.  Heck, some of us even tried each other's beers!  

The next day, when Tom woke up, he felt a little off.  Since he had learned about our friend's positive test the night before, he went that morning to get a test.  He was positive.  Ugh.  So, he came home and went straight to our bedroom to quarantine.  I kicked Murphy out of his room and sent him to the 3rd floor so I could stay in his room.  And Tom stayed away from Harlie (which meant I had to do all of her care) and wore his mask when he was out of our bedroom.  Tom cannot sit in one room for days at a time - and keep his sanity.  So, we took lots of walks outside.  

After a while, it was clear that no one exposed to Tom got Covid, so that was good.  Even after a car ride for several hours AND sharing beers.  Once his quarantine was over, we went to dinner with Mike and Marcy and some friends for Marcy's 50th birthday.  The next night, we went to Geoff and Bethany's house for Bethany's birthday.  We played games and yelled and laughed out loud and had a great time.  Also, side note, Mike and Marcy were with us that night, too.  At the end of that night, I felt really tired.  Like more tired than usual.  This really could've been explained by the two weeks of constant interrupted sleep (I had to do all the wake ups for Harlie during the nights since Tom wasn't allowed near her).  The next morning, I took a test.  That was a Sunday.  

The next morning (Monday), Harlie woke up and said she was tired.  Uh oh. She spiked a fever and stayed that way all day.  I spoke with her pediatrican and she told me to take her to the ED.  Unless I'm truly worried about Harlie, or I have exhausted all I can do for her at home, I do not take her to the ED.  And I argued my case.  

Funny side note, I had to argue first with a nurse that was new to the practice.  So, she didn't know us or our situation.  You should have heard/felt her reaction when I said I didn't want to take her to the ED. (Yes, I know we had a "plan" but, she didn't require anything I couldn't provide, so I wanted to change the plan.  Understandable, right? Haha!)  She has probably never heard a parent say that.  I debated for a bit (till she was speechless) and then said, just talk to her doctor, she will understand.  And then the doctor called me.  Haha!  Luckily, she does know us very well and understands me.  Edited to clarify that this was not an argument - it was a conversation and me and this nurse are totally cool.  😊 In then end, I always want to do what is best for Harlie and since no one knew what Covid could do to her, I had no choice.  I packed an overnight bag (this usually insures that I do not have to stay) for the both of us, put oxygen in the car and took her.  

They swabbed her, did a full respiratory panel, took chest x-rays, and did some blood work.  A little while later, the doc said they looked like Covid lungs.  Ugh.  A few hours later, they came to tell me that she was Covid positive.  Clearly, I was not surprised.  

I found her x-rays really interesting because usually, chest x-rays lag behind the patient's symptoms.  However, in this case, they are ahead.  She wasn't presenting with any kind of respiratory issues (no increased oxygen need, no increased work of breathing, etc.).  All she had was a fever.  So weird.  But, so good for me to know and keep in mind going forward here.  What this tells me is that if she starts to go downhill, her lungs are even worse than her symptoms, so we have less time to react and get her support from the hospital.  

She was fine, really.  Her fever came down with meds, her sats were fine on room air, and she didn't have any increased work of breathing.  So, I said I wanted to take her home and assured them that I would bring her back if she worsened.  They agreed and let us go.  Honestly, I found their whole demeanor to be comforting.  They didn't freak out.  They didn't care for her any differently (and trust me, I've seen enough ED care to know that it was the exact same - with or without Covid).  And they totally valued my opinion and said it was up to me.  Love it. 

The next morning, Harlie woke up and said she felt better, got herself dressed and ready for school, and had a great day!  She hasn't had a fever since Monday and today is Friday.  All of her numbers have been great and she is happy to participate in her schooling.  

Covid has not been as kind to me.  I learned I was positive the day after I took Harlie to the hospital.  I have felt like crap since.  I just feel like I have a really bad head cold with headaches and pressure in/around my ears and jaw.  Lots of fatigue.  Other than that, I'm great. Haha!  

So, we are on our third quarantine since Thanksgiving.  And this is no way to live.  The challenges that have developed due to being isolated are far worse than Covid was.  At least for us (maybe one day I'll have the courage to blog about some of those challenges/consequences that we are still trying to solve - months later). 

I started this writing a while ago.  We are now on Day 13 (me) and Day 12 (Harlie) since our first symptoms.  According to current info - Days 6/7 are usually the worst.  So, I feel confident that we can now celebrate that Harlie told Covid-19 to shove it.  Haha!   

This is a HUGE relief and life changing for us.  We are free from the fear of the unknown!  Once Harlie got it, we took no precautions in our home and lived life as normal (while confined to our home, of course).  The boys are healthy, and we thought if they got it, too, then they would be done with quaratines, too.  So, we wanted them to get it - just so all of us could be done and free.  Not to mention that if you test positive, you are free sooner than if you test negative after exposure.  

However, they tested negative!  Ugh!  We have not worn masks, we have eaten many meals next to each other, we have played cards and yelled and laughed heartedly in close proximity.  We even hugged!  I don't know how they haven't gotten it!  This just shows that it isn't as easy to catch as some might think.  Or maybe it is harder for kids to get.  I don't know.  When I told Murphy he tested negative he yelled, "How is this thing even spread?!"  Haha! 

I would like to think that our experience could bring comfort to healthy kids and adults.  I mean, Harlie is 14, has heart and lung disease and a compromised, open airway.  Yet, she had ONE bad day (and it wasn't even bad by her definition) and has been great ever since.  Also, just to let any worried readers out there know - Tom only gave Covid to me and I only gave it to Harlie (or he gave it to both of us, doesn't matter).  That's it.  That's where it ended.  Despite the birthday dinners where I sat next to others, gave hugs and laughed out loud!  

So, please, for the love, you don't have to wear your mask when you are all alone - or when you pass someone outside.  Can we just stop some of the maddness?  

I feel like I could teach a class on risk assessment.  For example, I saw a family in a park, outside, riding bikes - not wearing helmets, but wearing face masks.  For real.  Just in case I need to explain this - their risk to their health from a head injury is WAY higher/worse than the risk of getting and then having consequences from Covid.  This is coming from the mom of a kid who got a skull fracture and brain bleed from running and falling.  Imagine how much worse that would've been if he had been on a bike!  And, for real, I see kids/parents on their bikes all the damn time without helmets.  I just don't get it.  

My perspective on life and death is very different than typical.  I'm here to tell you that bad shit happens.  It just does.  For no "good" reason.  To people who don't deserve it.  That's it.  That is never going to change.  That is life.  That is why I just live my life as thankful as possible.  I'm reminded of the movie Finding Nemo.  When Marlin tells Dori that he promised Nemo that he would never let anything happen to him.  And then she said, "But then nothing would ever happen to him."  There's a vast difference between living and existing.  And we like to live.  Harlie is proof of that.  She is happy because she gets to live her life to the fullest possible.  

March 6

Wow.  I started this post two months ago... 

Since then, we are all great, for the most part.  Harlie's cardiologist wanted to see her and just check out her heart since she had Covid.  I don't think any of his other patients have had it.  She had an EKG, an Echo and all is well!  He looked at her x-ray from January and he compared it to her prior ones and he said in his opinion, it wasn't much different at all.  So, that's good. 

I have some other things I want to tell you about - her braces and the challenge with removing them (oh, nothing is ever straight forward or easy with her). Her next surgery in April (just had her virtual pre-op with her surgeon).  I'll do that in the next post.  And then I'll start posting again before/during her surgery and recovery.  

Also, I recently discovered some (okay, many) comments on my posts that either I never approved or responded to.  So, I'm super sorry about that.  I will be better about answering questions from here on out.  

Okay, that's it for now.  As always, thank you for reading! And thank you to all our friends/family who continue to support us - no matter what!

Much love,

Christy xo

Harlie Update

Hi!  It has been a really long time since I gave you a general update on how Harlie is doing.  I appreciate all of you who have emailed me, asked me and prodded me to sit down and write.  I am grateful that you care as much as you do. 

Since her hardware removal surgery in May, she's been quite busy.  Well, we've all been a little busy.  Since June 1st, I have taken myself or my kids to 31 in-person doctor's appointments.  In addition to that, I've had 13 virtual appointments.  I'm lucky to still have my job!  Anyway, I'll focus on her medically (will update on general life later) and summarize by area:

Hearing

Back during Harlie's jaw surgery in March, we had an issue with her right ear (her hearing ear).  Her jaw surgery created a lot of bleeding, and the blood filled her ear canal.  I noticed that week of post-op that her hearing was way worse than normal.  Surgery was in early March and I couldn't get her in front of her audiologist until June!  This was so frustrating.  I guess someone (with good hearing) said hearing wasn't essential during the beginning of Covid.  Communication is so incredibly important and wow, life is so much more difficult when communication is limited.  

Anyway, her hearing results were not good.  Her hearing decreased, diminished, got worse?  We were hoping that it was due to a blockage in her ear canal (dried blood, hopefully?).  So, we scheduled a follow up for a few weeks away and started putting drops in her ear to help dissolve what was there.  

She ended up having a DLB (direct laryngoscopy and bronchoscopy) with her ENT in DC and I asked him to take a peek in her ear while she was under anesthesia.  He did and said he removed a clot.  Awesome!  

So, we returned to have another hearing test.  Insert sad face here.  No difference.  Dammit!  Her audiologist said that sometimes when kids have growth spurts, their hearing can get worse.  I'm assuming that she's talking about kids with hearing loss only.  As a bonus (said so sarcastically) - I didn't see any evidence of a growth spurt, either.  

So, she ordered her a new hearing aid.  That was kind of hard for me - I had to decide between a rechargeable hearing aid or the kind we had with batteries.  I know that sounds dumb, but I always have hearing aid batteries with me.  The thought of having to remove her hearing aid and let it charge seemed like it would likely be a problem.  But, she told me that eventually all of the hearing aids will be rechargeable.  So, I guess I should try to adapt anyway.  I will say that the new one has bluetooth.  That is very cool because now Harlie doesn't have to wear headphones when she is on her tablet.  So, we lose having to charge her headphones, but gain having to charge her hearing aid.  

Her hearing aid charger is a case that you insert the aid into and the case has a plug.  We have one case.  And we went to my sister's lake house for our first weekend away with the new aid - and you can probably see where this is going... we left the charging case at home.  Ugh.  See, I would have had batteries with me.  And, even if I forget batteries - they are the ONE medical thing you can buy almost anywhere.  

The audiologist also went on ahead and reprogrammed her current hearing aid for her new hearing needs.  So, we at least have a back up now, which is nice.  Of course we didn't have it with us when we went out of town.  Rookie mistake!  Luckily, my niece was coming to the lake the next day, so she stopped at our house and grabbed her stuff for us.  So, I've ordered another charging case to keep in her bag.  And as I'm typing this I just remembered that it is in and ready for me to pick up.  Like weeks ago...

Her hearing loss has always been a true loss - it dominoes into more losses (speech, communication, language delays, etc.) so it is scary to think about it continuing to get worse.  For example, if we need to comfort her in the middle of the night - she now cannot hear a thing we say without her hearing aid.  She used to hear if we spoke a little loud, slow and clear.  Now, she hears nothing.  One morning a couple of weeks ago, she came into our room at 4am.  She woke me up and said something, but I couldn't understand her.  So, I said, "What?"  And then she said, "What?" And then I said, "No, I'm saying what to YOU, tell me again."  And she said, "What?"  And then she walked out of the room. Ugh.  It makes me so sad when she feels like she isn't heard.  

So, yes, I think her hearing is really important. 

Eyes

Back in the fall of 2018 we saw her opthamologist.  She recommended that we put eye drops in her left eye (the one that doesn't close all the way) several times per day.  This might not sound like a big deal - especially if you only have this one task to do.  But, man, you should see all the crap we have to make her do everyday.  And she hates eye drops.  Anyway her doc said that she has some scarring on her cornea (in her left eye) in several spots - due to her being in several medically induced comas (over 30 days total).  It was a constant battle keeping her eyes closed when she was in a coma.  All it takes is one piece of dust and when they close her eyes for her - they've closed it right in there.  Anyway, that was in 2018.  

So, a few months ago, she started telling me that she needed glasses.  I'll admit - I was suspicious.  This girl loves her accessories, and I fully believed she just wanted another accessory.  After she kept on complaining, I figured it was time for a follow up anyway.  I'll also admit, that I was not the best at putting those drops in her eye and I didn't want to get scolded by the doc.  

Anyway, we went and as you might've guessed - she needs glasses.  Insert face palm here.  Luckily, she is nearsighted and she only really needs them when she is watching tv (or if she were in a classroom, which she isn't). And now, she needs one kind of drops 3-4 times per day and a different kind of drop at night before bedtime.  

Her doc didn't scold me, either.  She was very nice and empathetic.  I really like her because she looks at Harlie as a whole person - and not just at her eyes.  She can see that we have our hands full and that Harlie is well loved and cared for.  

Airway/Jaw

So, as I mentioned earlier, we had that DLB with her ENT in DC.  This was her first one with Dr. Preciado since her jaw surgery in Boston.  Here is where I talked about her airway and how I was looking forward to Dr. Preciado giving me his opinion.  

Anyway, he didn't think her airway was as small as Dr. Lee (the ENT in Boston) said it was.  So, that is promising.  He tells me he has hope that he will be able to get her decannulated one day (get the trach out).  And I want to believe him, I really do...

He also gave me his blessing to go on ahead and start working toward the next surgery.  The next surgery is essentially joint replacement surgery.  And after the jaw distraction surgery, we were thinking we needed to give her (and us) a big break.  However, we can't wait too long because any growth we might've gotten out of her distraction - we don't want to lose.  And it takes months to prepare for this next surgery.  Basically, if you want to make it simple, distraction was phase 1 and joint replacement is phase 2.  Pointless to start the process and not finish it.  So, proceed we will.  She had a CT scan a month or so ago and the company will use that scan to fabricate custom joints that are made to fit in her jaw.  

The fabrication takes several months.  Her Temporomandibular Joint Reconstruction with patient-fitted TMJ Prosthesis (you should've seen my reading material last week!) is scheduled for April 12 at Boston Children's Hospital.  

Spine

We also had her follow up appointment with her orthopedic surgeon in DC.  

He said that he thinks her quality of life will improve if he does another spinal fusion surgery.  Her kyphosis scoliosis forces her forward, into a bent over position.  This makes it very hard (honestly, impossible) for her to stand for any length of time.  I'm talking a few minutes, at most. This also makes it very difficult (honestly, impossible) for her to walk any distance.  I'm talking a couple house lengths, at most.  

But, he wants her to grow as much as she can before he does it, since after he fuses those vertebrae they cannot grow anymore.  So, he told me to think about it.  We scheduled her normal follow up appointment for some months away and I've been thinking about it.  He said it will be a pretty brutal surgery.  And, not only are we coming out of that horrible jaw distraction surgery, we are gearing up for her joint replacement surgery in April.  Regardless of her growth, I just can't fit spinal fusion in her schedule right now.  So, it is going to have to wait.  

Growth

We went to her appointment with her GI doc and they always look at her growth.  I guess since things are relatively "calm" right now, she said it was time for us to see Endocrinology regarding her growth - or lack thereof.  

So, we did.  Because it was a new specialty to her, I had to fill out new paperwork.  I hate medical paperwork.  I am so over writing the same information over and over again.  Plus, I mean, come on...

That was a pretty interesting appointment.  First, it was pretty impressive that they had taken the time to review her medical history before coming in to meet with us.  That doesn't always happen.  The first thing they saw was her growth chart.

The doc we first met with was a fellow (in her final year, I believe) and she really wanted me to know that she knew her stuff - about hormones, etc.  She was pretty thorough.  After going over the basics of growth plates, bone age, puberty, hormones, etc., her attending came in.  She said she wanted to meet us.  She said Harlie's growth chart was "striking" and after stumbling over her words in an awkward few moments, I stopped her.  I knew what she wanted to say.  So, I said, "You want to know where we've been."  Relieved, she said, "Yes!"  

I told them both that we've had other priorities.  I'm sorry, but there's only so much we can fit in!  And when you've got concerns about breathing, how tall you are just doesn't seem to matter that much. 

I honestly never thought anything else was wrong.  I know that must sound funny.  What I mean is that I just always assumed she was so small because that was all her heart and lungs could do.  She has clubbed fingers and toes because there's just not enough oxygen in her blood by the time it gets to those extremities.  So, how is there enough left over to let her body grow?  

But, they talked about puberty and how important it is for one to go through it.  Duh. She went on to explain to me that it really helps female bone growth since after menopause, women lose a lot of bone density.  I let it go the first time.  But, it was as if she thought I didn't get it or something, so she repeated it but changed a few of the words.  Then I looked at her said, "I don't think that is going to be a big concern for Harlie."  This is why I so appreciate a doctor who is able and willing to step out of their specific specialty and look at the whole patient.  Regardless, I, given all the current life-threatening, life-impacting concerns I have for Harlie, cannot possibly give bone density after menopause a second of my energy.  Moving on...

She went on to talk about her growth and puberty - where we are now and what we can do about it.  Let me see if I can break it down more easily for you.  

Puberty: Girls stop growing after they start their period. Periods usually start about two years after breast buds develop.  Harlie has no breast buds. She is 14. So, does she have at least two more years of growth potential?  To find out, we needed an x-ray of her hand to tell us her bone age.  If her bone age was less than 14, then that would mean she has more growth potential.  And we needed to get some blood work done to see what her puberty markers were and all that jazz.  If she had low to no puberty markers, then we might have the option to give her some growth shots and force some growth and then force her into puberty after that.  

So, we got the x-ray and then did the bloodwork.  

A few weeks later the doctor called me with her results.  

Bone age:  Her bone age is 14.  So no real growth potential there. 

Puberty: According to her lab work - she is in puberty right now.  Haha.  

So, no growth shots and no forcing her into puberty.  There is nothing to do. She is done growing and I don't know what this all means for her breast buds or her period. We have a follow up appointment scheduled in February, I think. 

She is 14 years old.  She weighs about 70 pounds, give or take a pound or two.  She is 4'4" tall.  And she wears mostly size 10/12 in clothes.  She wears size 3 shoes.  

Before you say anything or think anything - this is what I want you to know...

Our children are supposed to grow.  And when they can't do that, it sucks really bad. 

As parents, our jobs are to feed them - so they grow.  It is literally the first thing we do after they are born.  One of the more painful things for me as a mom was the inability to feed Harlie.  I mean, we did, by her g-tube.  But I'm talking about feeding her by mouth and then turning her over and burping her.  I never could do that.  She doesn't know what a cookie tastes like.  She doesn't know what it is like to chew food.  She has never had her favorite meal and then said, wow, that was really good.  

We tried for many painful years to get her to eat by mouth.  But, it just wasn't meant to be. Maybe one day we will be able to try again.  But, chewing is likely a pipe dream.  I have accepted that.  Luckily, you don't have to eat by mouth to have a good life.  

Anyway, we work really hard to feed her via her g-tube.  And I know that sounds weird - I mean, how hard can that really be?  Well, Harlie cannot tolerate a lot of volume.  So, that has always been a big challenge.  We have always given her as much as she could tolerate - sometimes more so.  But it wasn't enough for her to grow. Her heart and lungs are working way harder than they should have to - there's just not enough left over.  

There is no positive to this.  There is no silver lining.  There is no parent on this planet that says, I'm fine if my kid can't grow.  It's all good.  

Will she have to shop in the kid's department for the rest of her life?  

I don't know.  Her body is so crazy, she could have a growth spurt next year for all I know.  For right now, it makes me sad.  But, then I think we need to be grateful for what her heart and lungs are doing.  That is pretty amazing. 

She is happy and she is hilarious and keeps us laughing.  I overheard her during her virtual speech therapy appointment (insert eye roll here) the other day.  

ST:  Harlie, last week you really struggled with ______.

Harlie:  Because it was hard!

ST:  So, we are going to work on that again. 

Harlie:  Can't we do something else?

Just this morning, Harlie asked me if she could make and bring me my coffee.  We told her she could turn it on.  The next thing we knew, she made herself an espresso - and drank it!  I had to laugh because it took me YEARS to train myself to drink coffee.  I had to start with a sugar-filled coffee drink at Starbucks until I could handle less and less sugar in it.  And this girl wakes up one day and chugs a freaking espresso.  

She also breaks my heart on a daily basis.  She had the opportunity to play with a baseball bat and tee a couple of weeks ago.  Apparently she loved it.  So, now she tells us that she wants to play baseball in the spring.  She wants to be on a team. She googled it and found a local little league and showed it to me and said she wants to go there.  She actually said her life would be better if she could play. 

Sometimes, it is as if Harlie has no idea she has heart and lung defects.  The girl gets out of breath walking up the stairs!  And - for real - you think we want her around a ball that could hit her face/mouth?!?!?!  Or her pacemaker?  I mean, we aren't even supposed to let her play any kind of sport where another person or ball could hit her in the chest/pacemaker.  

Look, we let her in the pool, in the lake, in the ocean - all areas of grave danger (and immense joy).  We've put oxygen on her bike/trike.  Tom has taken her "hiking" and we take her camping.  We've let her ride roller coasters (the more gentle ones). We do our best to give her all the experiences we can give her.  Oh, she wants a freaking scooter for Christmas.  Oh, the fear we have of all the bad things that could happen!  Why oh why does she have to want to do things we shouldn't let her do?!  

Luckily, we know a girl. And she runs Jacob's Chance and if we are lucky, they will have Buddy Ball this spring.  Alexa, remind me to call Kate. 

All of this reminds me of this quote I came across a few years ago:

What is stronger than a human heart, which shatters over and over and still lives... ~ Rupi Kaur

To end on a really positive note, one big thing happened in our house last week.  Harlie changed her own trach for the first time ever!  We are so proud of her!

That's it for today.  As always, thanks for reading and for caring about our girl. 

Much love,

Christy xo