Not looking good...

Hi!  So, there have been some developments since my last post. Harlie had her follow up appointment with her ENT in DC on Wednesday. One of the dressings had not fallen off yet. He removed it and didn't love what he saw. It appears that the growth (abscess) is already growing back. He had his wound care nurse come and look at her wounds and give me some directions on how to care for them. We know her from years before, so she knows Harlie and her past issues with wounds. 

While we were doing wound care, her ENT went and spoke to the infectious disease (ID) docs. They all agree that she needs more aggressive treatment. A few days after my last update, I received the labs from her cultures - Staph bacteria. Unfortunately, Harlie is allergic to the oral meds that treat Staph. So, she needs IV antibiotics. He offered to admit her right then, so she could begin IV treatment that night and then while inpatient, they could give her a PICC line so she could come home and get IV treatment here. She's had a PICC line at home twice before, so we are familiar with this process.  

However, Harlie's nurse, Brandy was with us and I didn't pack anything, of course. So, being admitted right then would have been really, really uncomfortable and logistically challenging. I said I needed to take Brandy home, and pack, but I could come back anytime (even that night). He said that they would call me and tell me when to come back based on bed availability. So, we left. 

Traffic was the worst leaving DC that I have ever seen. The entrance to 395 was completely closed and forced everyone to detour, which was just complete chaos. I really don't know how people deal with that traffic all the time. 

After we got home, I got an email from Harlie's surgeon in Boston. He asked me how she was doing. I replied and gave him an update - that her ENT wants her to start IV treatment. He replied quickly and basically said that he worries/expects that this infection will not fully clear unless we remove the joints. He said they should come out sooner rather than later. 

I really don't know how to express how devastating this would be. If he needs to remove her TMJ joints, it means that her surgery in April was for nothing. All that bruising and bleeding and pain -  for nothing. 

Not to mention, the risk of losing the little airway we gained because of the joints. Her stronger voice, her recent ability to wear a speaking valve, even her cap for small periods of time - all of that could be lost. 

Would we even be able to try it again?  

I just can't. The thought of traveling back to Boston, for another jaw surgery - but this time to go backwards?!  No forward progress to look forward to, no forward progress to help keep us all positive.  What do we tell her?!  How do we explain this to her? 

I just can't. 

Regardless, she needs IV treatment asap. At this point, I don't see the harm in at least giving the IV antibiotics a chance. Maybe, by some miracle, the staph is really only on her skin and not on the joints inside. I haven't spoken with ID yet, so I don't really have a lot of information. 

Anyway, on my way home from DC that night, they called and told me that I should expect a call sometime late morning on Thursday, letting me know a bed was ready. The next morning, I packed and got all ready. I thought about going on ahead and driving towards DC. Maybe we could stop at Tyson's Corner, or something so we were that much closer when they called. I mentioned that to Tom when he called that morning to check on things. He said, no, what if they call you with a change in the plan. So true. So, I didn't leave. Then they called and told me that insurance denied the hospitalization. WHAT?

It was at this point that I completely regretted my decision to drive home that afternoon. Maybe if I had just stayed and let Brandy drive my car back, everything would have been fine. Ugh. If only I had more information! I just had no idea that could be a consequence! 

I gave him all the reasons why this is wrong. I told him that her doctors needed to try again. This is another problem with fragmented care - the doctor that truly knows what's at stake is in a different state and not a part of this insurance pre-approval process.  Despite how devastating the consequences are to Harlie and my family, the financial aspect should mean something to them. I mean, the cost of removing the joints would be way more expensive than a quick few nights in the hospital getting a PICC line, hopefully avoiding the joint removal. But, they don't know that! 

On Friday they called me to schedule her PICC line placement on Monday, as an outpatient procedure. They started her on an oral antibiotic in the meantime, although I don't understand this at all (after being told that she is allergic to all the oral meds that staph is susceptible to). She is scheduled for tomorrow, August 30. 

I really know very little at this point. I don't know what they are going to put her on (maybe Vancomycin?) or for how long. Remembering what it was like with her previous PICC lines/IV treatment (also due to post-op infections) it takes some time to set up getting IV meds at home. I mean, I guess it could be done in one day, I just don't see how that's very likely. I don't know. I'm packing bags, just in case things change - again. 

I want so badly to hope that somehow things will go her way this time. But, after we got home on Wednesday night I did her wound care (have to do it two times a day).  And when I removed the dressings we put on that afternoon, I was shocked to see that the growth on the left side had gotten substantially larger in just a few hours. Despite my hope that IV antibiotics will help, it isn't looking good. 

Well, this is all I have time for tonight. We have to be on the road well before sunlight tomorrow. She has to take a covid test first thing in the morning and we have to wait three hours for the results, then they can do the procedure. Under anesthesia, by the way. After the last incident - it is too soon for her to go back under anesthesia. 

Oh, I have to tell you a funny story before I go. On Friday morning, I was running an errand with Harlie and we were headed to the car when the trash company arrived to collect the trash. She asked me if she could watch them. I said, of course. So, she walked to the center of our driveway and stood there, watching them. After they had collected our trash, she gave the guys a smile and a thumbs up.  Haha! Something about that kid just cracks me up. Despite all she has going on - and her stuff is some serious stuff - she really seems pretty content with life. Even giving a silent "good job" to the trash collectors. She is a funny kiddo. 

Oh, and one more thing, we were finally able to renovate the kids' bathroom to make it more Harlie friendly (I'll have to update on that later). When we went to Maine to pick up Cooper from summer camp we went into a cute store and I saw this little sign, and thought of her (and the boys, too). 

Okay, I will update tomorrow with how things went - or didn't go - or whatever the hell happens. 

As always, thanks for the love!

Christy xo

Surgery Take 2

Hi all!

Thank you for your thoughts and messages and prayers and all that. I'm sorry I haven't updated to let you know how things went. I should probably warn you that I'm struggling today. That is harder to admit than it should be. I mean, I feel like I've more than earned my feelings. I don't know why it is so difficult for me to admit when I'm feeling particularly sad. But, I am. And angry. Life is way too hard some days. There's a lot going on in my head and in this post, so please, bear with me.  

Monday was an early morning. We were on the road by 4:30am. Overall, traffic was okay. There were a few accidents on 95, but they didn't slow us down that much. We were still at the hospital early. 

Her ENT came to see her in pre-op and he took one look at the growth by her right ear and said it is an abscess.  He said it was hard to tell exactly in a photo. And there are so many people that believe telehealth is just as good as in person care... As you can probably guess, I am not one of those people. And if you were Harlie's parent, you would feel the same way. 

So, we are in pre-op and I'm answering the same questions over and over again. So fun. I sent Tom a text complaining about it - oh, the repetitive nature of medicine (while necessary in some cases) drives me crazy.  I guess if we were like typical people and only went into the OR once or twice (or none) it wouldn't be so bad. But we are here SO.MANY.TIMES.  He replied with "Can you tell me why you're here today?"  Haha! I got asked that by four separate people. As well as stating her name, spelling it, her birthday, our address, etc. 

I also get asked, "Has she ever had any issues with anesthesia?" And I have always been so thankful to say, "No, thank God." I mean, can you imagine having to go into the OR as many times as she has (like well over 70 now) and having issues with anesthesia?  

Hold that thought...

So, they took her back around 9:30. They told me parents are no longer allowed to wait in the waiting room. You have to go to the cafeteria and they will buzz you. Oh, being a lifer in medicine is so much harder now.  

Anyway, I think I got called back around 10:45ish. Dr. Preciado and I went into a conference room and he told me that he drained and removed the growth on the right side. He put in three dissolvable sutures. Although her skin is so tight that he couldn't get it to totally close in one area.  I can't remember what he said he did about that. It had grown considerably since it first appeared in May. I can't help but wonder if the size of it made conditions worse for her. It is so hard to get her in front of doctors and get scheduled for stuff now.  

This leaves me feeling frustrated and worried that because the world is so focused on Covid, that it increases the possibility of missing something more threatening to a patient like Harlie. Unfortunately, there are so many more potential causes of great harm to Harlie than just one virus. We don't have the luxury to worry about just Covid, and we can't let that stop us from doing what Harlie needs us to do to keep her safe.  And by safe, I don't mean getting sick. I mean not dying. 

Anyway, he couldn't do much with the spot on the left side - said he irrigated it and treated it with silver (what they use for burns).  The area under her chin, he couldn't do anything about. So, that sensitive, draining growth (granuloma) is here to stay for a while. Not sure what we can do about that, which is terrible because cleaning it every day is a nightmare. And she hates it. He said we need to wait for cultures to come back. I need to keep her on Clinda until I hear if/when we need to change them. Hopefully we'll hear something soon. I just want to feel some relief that the hardware in her jaw is okay. Is that even possible?

He also did a bronchoscopy. He is happy with how her airway looks for the most part. I think he said it is 4mm? I asked him what it is supposed to be and he said, 6, 7 or 8.  He said she has a voice, and can tolerate a speaking valve and trach changes are easy - all improvements from 2017/2018. We did talk about what is needed for potential decannulation and it isn't good.  She would need another LTR (airway reconstruction, which is what she had in February of 2018).  He said he would have a hard time agreeing to that considering how her skin had/has such a hard time healing. Not to mention that she has too many surgeries ahead of her and intubation through her mouth is just not possible. So, she needs the trach for several reasons, and right now those problems are not solvable. 

It wasn't lost on me that we were having this conversation just days from the anniversary of her decannulation.  Which, is today, by the way.  She was decannulated on August 11, 2015.  I can't believe that was six long years ago. Almost feels like it never happened. 

It is also the very day I watched her struggle to breathe ALL DAY in Boston Children's Hospital in 2017.  And that night at 11pm, she was emergently re-trached. 

Yes, today is doozy. 

Anyway, he said I could see her in the PACU (post anesthesia care unit). Oh, he also suctioned out her ear canal and said it was full of old blood (which I totally knew). He said her ear drum looks great, though, so that's good. 

So, I headed to the PACU. As I was walking in the unit, he was walking out and he told me that she was in Bay 31 and she was NOT happy.  Hmm, that's odd, I thought. 

She was crying and hitting the bed rail with her fist. She was basically screaming that she was in so much pain. Her nurse was already getting her some pain meds. The feeling in the room was definitely intense. I have NEVER seen her like that. I told her nurse that this was so strange and unusual. I mean, NEVER after any surgery has she ever been this "awake" this soon after and NEVER have I seen her cry tears - and she has had so many worse procedures!  What the heck?  She was inconsolable. Her nurse gave her Fentanyl, then Tylenol, then after 15 minutes gave her another dose of Fentanyl.  I mean, it was bad. 

She finally calmed down a bit and her nurse went into the hallway and I sat down. I got out my phone to call Tom when I noticed the room got really quiet. I mean, Harlie's breathing is pretty loud. So, I looked at her and it didn't look like she was breathing. I stood up and put my hand on her chest and shook her and called her name. Then she took some breaths. I looked at the monitor and her sats were 91. That made NO sense. Her normal sats are mid-80s - 91 is high for her. She wasn't on oxygen. And I know she wasn't breathing there for a second. So weird. 

So, I watched her and she did it again!  I again, shook her and called her name. Sats still good.  So weird. So, I went to ask her nurse to check her just to make sure I wasn't going crazy. But, she was on the phone. She could see I wanted her so she came in the room. I told her it looks like she's having episodes of not breathing. She got out her stethoscope to listen to her, but Harlie interrupted her and said, "oxygen." So, her nurse went to hook that up.  I looked at the monitor and her sats were still good. So confusing! 

Then Harlie did it again. But, this time, she opened her eyes really wide, and then she just went away. There was no focus in her eyes at all and she turned blue. She was completely unresponsive. I looked up at the monitor and her sats dropped to 36 in like one second (that was the last time I looked up so I don't know how low that number got). We shook the hell out of her and yelled her name and the nurse hit the button to call for help. 

Someone yelled, "Does she have a trach?" I don't remember who said yes, it could've been me for all I know. They said, "change it!" So, I grabbed her go bag which was on her bed and got a new trach out and opened it. I am so thankful I was on the correct side of Harlie to be able to use my right hand!  I asked for lube and someone put it on the trach, and then I changed her trach. My hands were shaking SO bad I could hardly thread the trach ties through to secure it in place! It was so awful! After it was secure, we gave her a ton of oxygen, I think someone bagged her for a second and then she "came to." 

Several nurses/staff said nice things to me and were just being supportive, in general. I wanted to cry. I was so angry and scared and mad. But, I didn't. I think the charge nurse or someone like that came in to ask us about what happened. While I was answering her questions, I said something like I noticed she wasn't making any sound, she breathes pretty loud and then Harlie said, "No I don't." Oh, that girl! 

The anesthesiologist who was in her case came, too. He said she had a post-anesthesia episode. I'll say! Strange considering how many times she's had anesthesia. He came back to check on her several more times that afternoon.  

After she was stable and things calmed down, she fell asleep for like three hours. 

I was finally able to call Tom and tell him everything.  I feel so bad for him to have to hear so much of what goes on over the phone versus being able to be present. 

When she woke up the next time, she was her normal self again. It was like everything that happened from the OR up to the incident - she was NOT okay. The crying, the hitting, the breathing...none of that was normal for her. 

She even smiled for me. She doesn't seem to remember anything about what happened. Lucky for her.  Haha!

The anesthesiologist wrote down what he gave her during the case and what was given to her after so I could tell future anesthesiologists.  So, remember when I used to be able to say she's never had any issues with anesthesia?  Yeah, those were good times.  What does this mean for next time? Is it more likely to happen again?  Is this her body's way of trying to tell me she's had enough?  

They kept her for most of the day, and let me take her home at about 4pm. The craziness happened between 11 and 12. On the way out of her room, her nurse said something about a mask for her... I must have looked at her "funny" because she immediately realized her error and said, never mind! Keep in mind she had a negative covid test on Friday. And we just watched her stop breathing. There is no way in hell I will EVER cover up her airway. No.freaking.way. Just stay away from her if you're worried about yourself.  

I forgot to mention that an EP (electrophysiology) nurse came to adjust her pacemaker since they were going to be cauterizing her wounds. They come before and after surgery to adjust her settings. She told me that Harlie's pacemaker battery is getting low (she has about 14 months left). So, we need to start sending in monthly pacemaker submissions and seeing an EP doc more regularly so we can prepare to have that changed in the OR at some point. She also needs another heart cath, so hopefully we can have them do both at the same time. 

I promise I try so hard to stay out of doctor's offices!  But, it is just impossible! There is always something that I have to address.  

Yesterday, Harlie saw something about back to school supplies. She looked at me and asked if she could go back to school. I told her I didn't know. She put her hands together and pleaded, "Please! I love science! I want to go to science and art class at school." I told her again, that I didn't know and that I would have to talk to her teacher. She said, "Are you scared I'm going to get sick? Stop being paranoid. I'm not afraid of being sick." She tells me I'm being paranoid a lot. I want to say, hold on Harlie, let me save your life again, then we can finish this conversation. 

Oh, we are in such a unique situation. So many people take the freedoms of things like breathing, attending school, learning, etc. for granted. Harlie wants to go to school so badly. She always has. But the decision to send her to school isn't just about getting sick. It is about her overall well being - mentally and physically.  And it is about the best way to educate her. 

We don't have a nurse this week (she's on vacation). I think I'm kinda glad because I don't think I'd feel up for going to work anyway. She hasn't felt like doing much, either, so I've cancelled most of her appointments for this week. Today, she wanted to go to the mall and walk around. So, we did. Maybe that wasn't the best idea. I really felt the stares today. I forget that she has dressings on the sides of her head that are a little bloody. I wonder if people are so distanced-focused (and Harlie's not wearing a mask) that they just avoid. This one family watched me struggle to get her in the door of a store.  The front wheels got stuck and I couldn't hold the door open and lift her chair at the same time. I got it after a bit, but geez! After I got in, she said, oh, I was thinking you were a pro.  WTF? And then seeing girls who are probably her age hanging out with friends and stuff.  Just makes me so sad how different her life is than the way it should be. I want to make it so much better for her.  

Well, I wish I could end this post on a positive note. But, some days are just like that. We will get through it, it just hurts like hell today. 

Thank you for thinking of her, and us. I do really appreciate it.

Much love, 
Christy xo

Surgery, take 1.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Harlie reading to Mabel.

Harlie at the paint store.

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

The growth-thing on the left side.

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

Harlie at speech therapy, sporting her speaking valve.

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

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

Much love,

Christy xo