Fall 2025 Update.

I don't know how to begin a post after this long. Trust me, I've tried. I've tried so many times to write. I get started, might get a few paragraphs in, then I find myself overwhelmed. Or I just don't want to think about what I'm writing about anymore. Then I go and play some stupid game on my phone so I don't have to think at all. I even "finished" a post in the summer. But I still haven't published it. Despite all the good feedback I've received over the many years I've been blogging about our life (started 19 years ago!) I've been struggling with sharing my life lately. If you've ever commented "thank you for sharing" I thank you. It is so hard to share your inner thoughts, your feelings, your fears, etc. with close friends and family - much less to anyone on the internet who is willing to read them! It takes a certain strength, an energy, something - to share. It makes you vulnerable and you need those things to get you through that vulnerability. I guess lately, I haven't really had that something to do it. I still don't. But, I'm going to do it anyway.  

I'll start with a picture of the first day of school for Harlie (12th grade) and Cooper (11th grade). 

Okay, here is what I started weeks ago:

I haven't updated you in so long. I have tried to write - several times. But, I feel like my post gets so overwhelming. I do not know how to update you on our life in a short, concise way. 

So, how is Harlie doing? 

Overall, she's doing well. I feel like this school year got off with a rough start. Harlie was offered to attend a program where she would go to a different high school for the first half of every other day and learn about job stuff. 

Wait, I have to back up first. For years Harlie has been telling anyone who would listen that she wanted to take a science class. So, last year in her IEP meeting, we discussed this and everyone agreed that science was clearly important to Harlie. So, they thought Oceanography would be a good start. So, that class was added to her schedule. 

Unfortunately, Oceanography and this work program were scheduled on the same day. Schedules came out the week before school started, I think. So, on Harlie's second day of school, she was put on a bus all by herself and sent to a different high school where she didn't know anyone, had this work program, had lunch, then she rode the bus alone, back to her school. After arriving, she went to Oceanography for the last 15 minutes or so of the class. 

Also, she didn't have PE class. Instead, she had a photography class. To be honest, her last IEP meeting was sometime last year and I cannot remember the details. Did I decide she would take photography instead of PE? Or did someone else? Was there a mistake? Miscommunication? I have no idea. 

Regardless, Harlie wanted science and PE and she essentially got neither. She was miserable. Like so upset and it broke my heart. 

Normally, I would ask her to give this work program more than just one day's chance. But, that wasn't fair. She did not ask for the work program, she asked for science. And honestly, I really don't see how she will ever work, physically speaking. Her working is not an expectation nor is it a goal (at least for now) as far as I'm concerned. 

So, I pulled her out of the work program and added PE. Because of scheduling conflicts, we had to take her out of Photography I and put her in Photography II instead. I hate to have her skip anything (because she needs more time versus less) but I was told the teacher said it would be fine and really, I had no choice. 

Now she gets her full Oceanography class. I know I made the right decision because after school on the first day she took the full class, she showed me her Oceanography notebook where she had taken notes of all the rules of the class and then listed bodies of water. Just writing all that was so much work for her! 

Then, she got out her tablet and started googling all of the bodies of water on the map so she could see and learn where they all are. Then she told me they had a quiz the following week. I honestly think that's the first time she's ever told me she had a quiz or a test and it made me tear up. Talk about appreciating the small stuff. She wants to learn so badly. It kills me how hard she has to work for everything. 

I just hope that her Oceanography teacher can see and appreciate that about her. I know you're probably thinking, how could he/she not? But, sadly, not everyone sees value in a person with disabilities. Sometimes I feel like some people don't see Harlie at all. Well, I think it is more like they don't want to look at her. Like they know she's there, but they pretend they don't see her, so they don't have to acknowledge her. I've been out with her (like to the aquarium in NC this summer) and I saw both adults and children walk in front of her, cut her off in the hallway, get in front of her at a tank, etc., like she wasn't even there. Not one person said "excuse me" or "I'm sorry" they just kept on trucking like we were invisible. It sounds ugly, but it is the truth. It was a terrible experience. The kids, I sorta get. But, the parents? No excuse. 

We have her schedule straight now, which is good. But, the school situation is still a little frustrating. This is Harlie's 4th year at this school and she has had a different case manager each year. Other individuals have changed in the department as well, and these inconsistencies make navigating school extra difficult for me. For most students, they are learning to handle so much communication on their own. Cooper handles his own stuff and tells me what I need to know. I don't have to communicate with his teachers at all. However, it is not like that with Harlie. I have to handle so much stuff for her. I wish her school could keep a case manager longer than one year. It makes me feel like the Exceptional Education department isn't valued at her school. 

An exceptional education student can stay in school until they are 22 years old. I think it is typical for a student to walk at graduation with their class. However, I don't feel like Harlie really has a class per se. We put her in KG at age four, on purpose, so she would take it twice, which she did. Then we had her repeat 2nd grade because she had been out so much for medical reasons. For third grade, she was moved to a different elementary school. Then her medical stuff got so bad that we took her out of school completely and she went on homebound (she didn't attend one day of 4th grade). Then Covid happened and I couldn't send her to school because their Covid rules were to protect all the other students FROM Harlie's trach, which put her in harm's way, so she went back on homebound. Anyway, while the last four years have probably been the most consistent she's ever attended school, she doesn't really have any "friends" in the traditional sense. 

Right now, Harlie thinks she is going to graduate high school and then go to college, like so many other students. But, that isn't going to happen. So, I think it would be detrimental to her to have her walk/graduate, just to have her return to school the following fall. Selfishly, I know it would be detrimental to me (Tom, too). Knowing what I know about Harlie and her hopes and dreams, I want to put off the reality of what her future will be as long as I can. It was my understanding that we could choose when she walks. I only speak for myself here - I'm sure this process of walking with your class and returning to school as a "super senior" works for many and that is great. I am not trashing that process at all. I'm just saying that in our situation, that path sounds more painful to me. When she graduates, I want her to be done with that chapter. Just like Murphy was and just like Cooper will be. Although, this also means that Cooper will graduate before her. I know it was hard for her when Cooper got his driver's license. She knows she is older and she said that it is her turn to learn how to drive. But, that just isn't possible. I haven't been able to share yet - but she had that psychological evaluation done back in May (for her guardianship process). As a result of the evaluation, she was officially diagnosed as having an intellectual disability. I'm not going to get into that right now. I will definitely stop writing and go play some dumb game on my phone if I attempt that. Haha! So, based on that evaluation and diagnosis - she cannot drive. 

We have talked to her about this graduation thing and I don't really know how much she truly understands. Unfortunately, she was in the hospital when Murphy graduated - so I don't even know if she knows what that even looks like. So, maybe we will change our minds, but for now, we are waiting for her to walk. 

Her next surgery is October 14th - back in Boston. 

The above is what I wrote some time ago. I guess I didn't want to think about her next surgery in Boston. Haha! 

Since then, I met Harlie's Oceanography teacher during parent/teacher conferences. He told me that Harlie "works from bell to bell". That is awesome. I love it. She is such a hard worker. So, I think he sees her and that makes me feel better. Here are a few more pics of her notes. Maybe it is weird to share them, but I think they are so darn cute! 

Also, there was a new development with her surgery in Boston. Back in the summer, Harlie's dentist took an x-ray to look at her wisdom teeth.

The area circled in pink is the prosthetic TMJ on her right side. The wisdom tooth on her lower left side has a red dot on it. As you can see, the tooth has a hooked shape to it. Seems gnarly to me. The white thing with the blue dot on it is the temporary spacer to hold the place for the upcoming prosthetic TMJ.  As you can see, the hooked wisdom tooth is super close to where the TMJ needs to go. 

Since the wisdom tooth is on the same side that the TMJ is being replaced, her dentist was thinking while the surgeon was in there, perhaps he should remove it at the same time. So, I sent the x-ray to her surgeon in Boston. 

Ugh. 

He said that the lower wisdom tooth on her left side looked bad. When he replaces her TMJ, he will do that from the outside of her face. To remove the wisdom tooth, he has to go inside her mouth. The tooth is so close to her joint that the risk of bacteria traveling from the tooth area to the joint is way too great. Given her sensitivity to infection (she has been on an antibiotic for over four straight years for joint infections and this will be her second TMJ replacement due to infection) that the best thing to do is to remove the wisdom tooth several months BEFORE he replaces her left TMJ. He said even if we wait a year or more to remove the wisdom tooth, the bacteria could still penetrate the prosthetic TMJ. 

My first thought was that some people go their whole lives without having to have their wisdom teeth removed. I mean, Murphy still has his and he is 21. I am not looking for more surgeries here. Plus, we had already bought our plane tickets, made logistical arrangements and mentally prepared for this surgery. Also, and probably my biggest concern, is that the last time we went through this....ugh this is so hard to explain. Let me do it this way:

April 2023: her right TMJ was removed and he put a temporary spacer in to hold the place. 

October 2023: he put in the new right TMJ. But, during the time in between surgeries, the TMJ on the left side became dislocated. He had to open up the left side to fix it. This lead to the left TMJ becoming infected. Which has lead to the left side needing to be replaced. 

Another thing to note - it takes some time to know if there is an infection. She came off her antibiotic in December of 2023 and in January 2024 she started showing signs of an infection on the left side. So, she had to go back on the antibiotic. Thankfully, she has been tolerating this antibiotic (Doxycycline). We just kept her on Doxy until the infection broke through and reappeared in December 2024. Once the infection breaks through while on the Doxy, we have to remove the TMJ. 

So, this wisdom tooth creates MORE time in between the removal of the left TMJ and the replacement of it. So, will the right side become dislocated? And if so, will he then have to open up the right side? And if so, will the right side become infected?!? Do you see what I mean? Adding time in between the surgeries makes me super nervous.

So, I replied with "Can we just forget we ever had this conversation?" I asked if it was possible for her to just keep them forever - I mean, not everyone gets them removed. He told me it looked like the tooth was not in great shape - which meant it was risky to leave it. I took her to her dentist to so he could take a closer look. He said that it appears that her wisdom tooth has been fractured (during some past surgery). So, her surgeon said it must come out. At first, I just didn't want to think about changing our logistics. So, I asked her surgeon if he could remove the tooth on our already scheduled OR date and he said of course. 

But, as I thought about it over the next week or so - the thought of doing what is likely some version of outpatient surgery - in Boston - sounded really terrible. I mean, who the hell wants to have a bear of a wisdom tooth removed and then go back to a hotel or worse, get on a plane - or in a car for a 12+ hour car trip home? So much of what happens to Harlie is out of my control - but this I just couldn't do to her. Or to us, frankly. It is very hard to be a caregiver post-op when you're traveling. Plus, it didn't take me long to start fearing - what if something happens and we are in the air - or hundreds of miles away on some highway? I mean, to everyone else - this is just a wisdom tooth removal. But, just when you think something will be simple - that's when things go wrong. 

So, I reached out to a local oral maxillofacial surgeon at VCU that we know and love. He has helped us out in the past when Harlie was post-op from Boston. He said he could remove it for us here, locally. So, that's what I decided to do. It makes so much more sense to stay here for this. He got us in his clinic within a week. He said that it isn't going to be easy, but he will get it done. Haha! Her mouth opening is so small, I don't know how they have any room to do anything. Plus, this isn't a straight tooth, so that's got to make it more difficult. She also has a wisdom tooth on her upper left side. We have to decide if we want him to remove that one as well. I just don't know that I want to do both at the same time. I know that is normal for most people - but well, Harlie isn't like most people. So, I think I'm going to leave it be for now. I don't want to add more risk if not absolutely necessary. At this point, her wisdom tooth removal is scheduled for November 25th at VCU and her TMJ replacement surgery is May 5th in Boston. 

Back to what I was saying earlier about the time in between surgeries - her left TMJ was removed May 13, 2025. The new TMJ will be placed May 5, 2026! A whole year! I know there is absolutely nothing I can do about it. But, I have to tell you, it takes so much work on my part to try and stop worrying about all that could go wrong. So, that's what I'll be doing for next eight to ten months. 

Who am I kidding? Honestly, I think the last 19 years have broken me. I'm now a catastrophic thinker. So, I don't think I'll be worrying for ONLY the next eight to ten months. I'm working on it. But, I think it goes with the territory if you have a medically fragile child that has experienced a lot of close calls (medical trauma). Not only have we experienced them - my vigilance and hyper awareness is what could save her life in the future, too. So, I can't just stop worrying. This has become more of an issue lately and has started to impact other areas of my life. Maybe it has for longer than I've been willing to admit to myself. I might have the courage to share more about that in the future, but not today. 

Since we rescheduled her TMJ surgery and it is some distance away - I reached back out about trying to get the oculoplastic surgeon scheduled on the same day. No can do. Ugh. Can you believe that? This is so frustrating. Every time I look at another option, it means a whole new ophthalmology consult. She's had three in the past year! Trying to get her eye situation better has really been a ton of work and it is hard to think that I have to keep working on it! 

Despite being as healthy as Harlie can be, she has the following upcoming appointments:

Electrophysiologist (pacemaker check): November 6

Hepatologist (liver doctor): November 19

Wisdom tooth extraction: November 25

Ophthalmologist: January 2 

Dentist: January 5

G-Tube follow up: January 6

ENT, Bronchoscopy: January 9

Damn, that first week of January is going to be rough. Honestly, I might have to reschedule one of those. 

Well, that's it for now.  I'm spent. As always thank you for reading and for caring. 

Much love,

Christy xo

Medical Updates

Hi! It has been a while since I've given a medical update. So, here goes...

Temporomandibular Joint (TMJ) Update

Here's a recap of her TMJ saga:

April 2021 - She had her first custom prosthetic TMJs placed on both the left and the right. This was one of her most brutal surgeries/recoveries. This is the hospitalization when her tablet was stolen from her bed while she slept. And this is the one when she couldn't stop bleeding for weeks. It was a horrible time. Anyway...

May 2021 - a growth appeared at her incision sites on both sides. I took her to several doctors to try and find out what it was.  

August 2021 - I finally got her into the OR with her ENT in DC. He said it was an abscess/infection. They gave her a PICC line and a two-week course of IV antibiotics.

September 2021 - the abscess returned, so infectious disease put her on Doxycycline. Over the next year, we attempted to take her off Doxy several times, each time the infection returned, so she went back on Doxy. 

November 2022 - the infection returned on the right side only, despite being on Doxy. After consultation with several of her doctors, the decision was made to return to Boston to remove the TMJ.

April 2023 - the right TMJ was removed since that is the side where the infection re-appeared. The surgeon said the right side had a track and we never would've beat it with antibiotics. He put a medicated temporary spacer in it's place. While she recovered from this surgery, they made a new custom prosthetic TMJ for her. 

October 2023 - the new custom right TMJ was placed, and the left TMJ was repaired since he found it to be dislocated. This was very unfortunate, because it meant that he had to go into the left side, which opens up the possibility of post operative infections.

December 2023 - We were finally able to stop the Doxy! Yay! This was great, because by November, it became difficult to get her Doxy at all. For some reason, there was a low supply, and I would have to go to several different locations to get what she needed. So, when we were finally able to STOP giving her Doxy, we were THRILLED. It was a little scary at first. But, her surgeon said he felt really good about how the surgery went and he didn't have to go into her mouth this time, so the whole site was cleaner, in general. 

January 2024 - The infection reappeared on the left side (not the right). The left side is the one that has the original TMJ and was dislocated. When I was ready, I contacted our infectious disease doc and she put her back on Doxy. 

December 2024 - On Christmas morning, I discovered that the infection reappeared - even though she has been on Doxy consistently since January 2024. 

January 2025 - I contacted her infectious disease doctor. She put her on Linezolid for 12 days and after that course, we went back on Doxy. The infection looks unchanged since December. So, I had to reach out to her surgeon at Boston Children's Hospital. I explained to both doctors that we are scheduled to go to Hawaii for her Make-A-Wish trip in March. There is no way we have time for her to have surgery before then. So, can it wait till after the trip? They both felt that it would be okay to wait since she will remain on Doxy. 

Trying to find a "convenient" time for this surgery was a challenge. Tom will miss a week of work in March. Then he starts a big job as soon as he gets back. This meant he didn't want to be away in April. We Heart Harlie & Friends has a major fundraiser April 26, so I didn't want to be away during that. She also has summer camp in June. So, she needs to have the surgery before and have enough time to recover from that before camp. I hate for her to miss school - especially if it is the end of the year. But, we really had no choice. 

May 13, 2025 - She is scheduled to have her original custom prosthetic TMJ removed and he will place a medicated temporary spacer. They will then make a new TMJ for her and we will have to return to Boston (hopefully before it gets cold up there) to have the new one put in. We will have to talk about what he can do to try and prevent the right side from becoming dislocated during this process. I fear that we will be doing this forever if we can't prevent a new infection from brewing on either side. 

I have to admit that I am NOT looking forward to returning to Boston again. I just don't know how many more trips and surgeries we can handle. This is not something I would ever choose for her at this point. It is out of my control. We cannot leave an infection in her jaw. But, I am so DONE. I say that, but I know I can't be done. I have to make her go again - and then again in the summer/fall. 

Harlie's Left Eye

One of Harlie's original birth defects was that her left eyelid didn't form correctly. When she was born, she actually couldn't close her left eye on her own. After a few months, she was able to gain some closure. But, it has never fully closed. This leaves her eye vulnerable to dust and particles, etc. When she was in the hospital all those months in 2017 and 2018 (two medical induced comas - one lasting 7 days the other lasting 22 days) they had a hard time figuring out a way to protect that left eye. They tried taping her eyes shut, putting masks over her eyes, sometimes both at the same time. But, her corneas still ended up with scarring. She sees an ophthalmologist yearly. 

Well, this past fall her ophthalmologist said that her scarring has gotten worse and that she was surprised she could see as well as she could out of that left eye. She explained to Harlie that she must put eye gel in her eye before she falls asleep every single night. Surprisingly, she listened to her doctor and has been really good about it - even though she hates it. However, her doctor said she thinks it is time to talk to a surgeon to see if something can be done to her eyelid to help with closure, which would hopefully stop/prevent more damage to her cornea. 

So, when we scheduled her TMJ surgery in Boston, it occurred to me that it might be good to get a consultation from a surgeon there, who likely sees more kids with these kinds of defects. So, I asked her plastic surgeon about it. They told me that she would need to see an oculoplastic surgeon. So, I called that office and asked if we could schedule a consultation. Not surprisingly, this has proven to be a difficult ask. 

I was thinking they could come and take a look at her while we are there for pre-op/surgery the week of May 12th. Then, IF they felt that they could help her situation, they could schedule surgery at the same time she is getting her "final" TMJ placed in the summer/fall of 2025. 

Of course they asked that her records and notes from her eye doc here be sent there for review. The office in Boston told me that they are scheduling appointments for November 2025 at this point. But, he is going to talk to the team since we are traveling and ultimately, I'm trying to minimize the number of surgeries she has to have. After a few days, I received another phone call and he told me that there are three oculoplastic surgeons. But, only one of them can (?) operate on patients who are 18 (the other two are pediatric only) and that it looks like she (or all of them?) is away at a conference that week. He asked if we could come another time. I told him that it is extremely difficult and costly for us to go there and if I can't combine visits, I just can't make it work. I'm sorry, I just can't. That would be a THIRD trip to Boston in one year (when I want to go zero times) and I am only human and I'm sorry that is just TOO much! 

I cannot travel with Harlie alone - I need Tom. And Tom is missing work in March, then again in May, then again in June (to take her to camp) then again to take/pick up Cooper from camp in Maine (he was selected to be a counselor in training at camp this summer!), then again for her 2nd stage surgery. Also, keep in mind that I don't even know that they can help her and I don't even know if insurance would approve it, etc. All of that is really an impossible schedule. 

He said he understood and he actually sounded pretty sympathetic. So, he said he was going to talk to the team and get back to me. Honestly, I don't know what he can do. Sounds like a pipe dream that isn't going to happen. Well, you can't say I didn't try. 

Guardianship

So, now that Harlie is 18 and she isn't a typical 18 year old, I have to think about a guardianship. This has been difficult for me because most of the time when you hear about a guardianship, it refers to an "incapacitated" adult. Even though Harlie is delayed and has a heck of a complicated medical life, she is not incapacitated. However, according to her recent school tests, evaluations and IEP, she is very delayed (she's basically on a 2nd grade level and she is in the 11th grade). I'm thinking that an adult who is operating on a 2nd grade level could benefit from some protection financially and she definitely needs help navigating her medical complexities and decisions. 

But, as usual, nothing is simple. I've now been working on this for months and I feel like I've made no progress. Medically, we don't have a diagnosis that explains that she is delayed - or why she is delayed. She has no diagnosis of a learning disability or anything neurological. All of her IEP and school stuff talks about what a hard worker she is, how much she wants to learn, etc. So, we need to get a psychological evaluation to show her cognitive ability/IQ and adaptive skills. I'll spare you the agonizing steps I've taken to come to the learning that most facilities who do this testing in our area are not approved by Medicaid (which is what Harlie has because of her medical qualifications). So, I asked if I could just pay for it privately. The answer is no - because legally, they aren't allowed to bill patients who have Medicaid. So, we can't get what we need? WTH? 

So, that's where we stand. My attorney said that we can start the process with what we have and see what happens.  So, I guess that's what we'll do.  There are times when my life seems unreal and ridiculously overwhelming. I mean, one of these issues would be a lot to deal with. And these are just the ones I'm talking about in this post! 

Cardiology

Harlie had her annual cardiology appointment on Tuesday, February 11. She had an echocardiogram (an ultrasound of her heart). I think that took over an hour, but it felt like forever. 

It was actually interesting because the person doing it was training so I got to hear what they were saying about the echo while it was happening. I gained a new respect for the skill they have to have to get good pictures and videos of a heart - especially when there are challenges like tons of scar tissue and an unusual heart anatomy. However, even though I knew that, after a while I started to get a little concerned that maybe some issue has developed since her last echo and that was causing it to be even more difficult. 

It made me remember when I was pregnant with Harlie and we were sent to Children's National for a fetal echo. We did not have any idea that her heart was wacky at the time and the echo took forever.  In fact, the room is dark when they do it and there is always a hum in a hospital and I actually fell asleep for a few minutes during the exam! Then the tech stood up and said, "huh, the baby isn't letting me see all four chambers of the heart, I'm going to go get the doctor" (or something like that) and then the doctor came in and did the echo for a while then he asked us to go wait in a conference room where there was a box of tissues on the table. 😑 Just in case you don't know, Harlie's heart didn't have four chambers.

Anyway, back to present day, finally they were done her echo and we returned to the regular exam room. When her cardiologist came in a few minutes later, he said, "Her echo looks great." Haha! Ah, the emotional roller coasters I ride when no one else knows I'm riding them. 

Then he said something about since she's 18 now, it is probably a good idea to start thinking about getting a heart cath done to take a look at things. Honestly I don't know how I could work in a heart cath in our schedule right now. It is hard to remember exactly what is said in some of her appointments. Especially after I ride a roller coaster in my brain. But, he said something about her liver and monitoring that and I swear I was like, "Oh yea, I forgot about that issue!" For a little while after the appointment, I reflected on how I could forget such a thing. I mean, it was something that REALLY worried me last year, for quite a while. We've had numerous appointments regarding that issue in the past year. But, honestly, it is survival. I have to compartmentalize and there are only so many tabs I can have open in my brain. Sometimes I just have to say, "that isn't today's problem." 

Anyway, since I had him in front of me, I asked him about my guardianship challenge. I wanted to know what the worst case scenario was if I cannot get it, medically speaking. He said medically, he doesn't think I'm going to have a problem not having a guardianship for her. He said he will write up something for me that explains that there are several factors (just within the cardiology aspect) that contribute to her developmental delay. Like prolonged oxygen deprivation (she has had low oxygen saturations her entire life), cardiac arrests, surgeries, etc. all contribute to brain development issues. 

While it would be kind of nice to get some answers (not that I ever really expect any) as to why she is the way she is or exactly where is she IQ wise or cognitively, he thinks I could put this on the back burner as we have more pressing issues (obviously). I do love when a doctor can stand back and look at the whole picture of Harlie, versus just zeroing in on their specialty. I really love this cardiologist and trust him and I'm grateful to have him in our corner.

So, we'll just see what happens. I've reached out to another contact about the psych eval and maybe one day I'll get it worked out. For now, this is where I'll end this post. I wonder if y'all get as exhausted reading some of my posts as I get writing them. I swear, sometimes I still can't believe this is our life and that we've been living it for over 18 years. 

Thank you for reading and for your continued support! We couldn't survive without it!

Much love,

Christy xo

Here's a pic of our snowy view from the 4th floor of the Children's Pavilion downtown.

Post-Op Day 3

It occurred to me that when I post this blog to Facebook, it shows the first pic really big. So, sorry about that! So, I added a much better pic, so that people scrolling aren't startled by a huge pic of Harlie's swollen face. 

Okay, on to our reality...

Day 3. Peak Swelling Day.  

Dear God, I hope so.  

Last night when we left, I was feeling soooo yucky.  The good thing is that I really liked her night nurse.  She seemed like she was tough, but compassionate. And she was a problem solver.  I like that in a person.  

We left close to 9pm.  It was hard to leave her.  And as we were walking to go find some dinner, I told Tom, "This is it.  I am never asking her to go through this again." And he said, "You say that every time."  

I can't help but think that fundamentally, humans are way stronger than we give ourselves credit for.  We need to try and remember that.  Somehow, when we are challenged, we dig deep and survive.  As we walk through the streets of busy Boston, I do not see strong humans.  I see people who are afraid of everything.  I wish I could tell them that they are stronger than they know.  But, if you believe you are weak and afraid, then you will be weak and afraid.  

We are not weak or afraid.  And somehow, despite how incredibly HARD this is, we will get through it.  And, I suppose, in time, when we are faced with new information and new possible solutions, I will weigh them in the grand scheme of things and make a decision based on that information - not on my memory of this surgery/recovery or on the emotions I'm feeling right now.  It is what I have been doing for 14 years.  

But, right now, I am saying, I am never asking her to go through this again. 

Also, last night, I was able to peek in her mouth.  That front, bottom, permanent tooth is gone.  GONE!  Where did it go?  We know she didn't swallow it.  When did it come out?  I think it came out on surgery day.  I just can't explain how I'm feeling right now.  Why oh why did I make the decision to remove that damn splint?  WHY?!  March 18th.  Less than one month ago.  After all that effort, and she freaking lost another permanent tooth anyway.  After all this poor kiddo has to go through - it is just salt in the wound.  I HATE to say things like - it's unfair, or can't she catch a break?  It is hard to have a good attitude and laugh when you hear yourself saying those sorts of things.  But, fuck, it is so unfair! Sometimes, I think God has a voodoo doll of her.  I want him to pull all the pins out, hug her, say he's sorry, and then put her down and leave her alone. 

Yikes.  That might be harsh. Sorry.  But I can't help what I think when I'm pushed like this.  It's killing me, people.  Killing me!

Okay, changing subjects to talk about something good...

A while ago, I reached out to my family asking for help with the boys and dogs while we are gone.  Jordan (my niece) was quick to create a spreadsheet and sent it out to everyone so they could sign up for different shifts to cover.  How great is that? It is bringing a smile to my face right now.  

Murphy got a job right before we left.  His first day was Saturday (we left on Sunday) and he said he really liked it.  He is running food at our favorite restaurant.  And he is trying new foods while he's there, which we are LOVING. He tried sushi!  For those of you that know us well, you know how much we love good food.  And somehow we have produced three kids who do not appreciate good food.  Well, one doesn't even eat any.  Haha.  Anyway, the thought that Murphy is growing into a person who might appreciate good food is making us so happy.  Plus, this place is generally pretty busy, so if he can move faster and work harder, that would make us really happy, too.  Oh, and they seem to be keeping him busy with plenty of hours.  So, he's going to have to figure out how to manage that with his schoolwork.  Also, good skills to develop.  

Cooper tried out for track at his middle school.  Of course track try outs were this week, while we are gone.  Maggie (his cousin) had that shift on Tuesday (I think, the days are running together at this point) and she went up to the school to cheer him on.  How great is that?!  We were crossing our fingers that he made it.  

He has really been struggling with virtual school.  It did NOT work for him.  And he went from an A/B student who LOVED school, to literally failing every single class.  And for all the people who think it is from a lack of parenting - I am here to tell you that is NOT true.  Anyway, we sent them back to school the second we could.  Just the other day Cooper said, "Tomorrow's going to be a good day, all of my teachers will be there!"  Not all of the teachers have returned, so some of the classes are still virtual, even though he is in school.  Anyway, the school said that only in person learners could try out for school sports.  So, I told Cooper, this is your year, bud!!!  Haha!  

He called me yesterday afternoon to tell me that he made it!  I said, "Congratulations! I'm so proud of you!"  Then he said, "Mom, everyone made it."  Haha!  Cooper's keeping it real.  

Speaking of keeping it real, I have to tell you this... Cooper had like a 3% F in Social Studies at some point earlier in the 3rd quarter.  Social Studies was one of his favorite subjects last year, and he was put in an advanced class.  But he literally had a 3% F.  He has been doing Adrenaline with our friend Paul for the past few months.  He really likes it.  That lead to him thinking about trying out for track.  The school posted that the students have to have a passing grade in all core subjects in order to participate in school sports.  Finally, some positive motivation!  

So, after a few weeks or so, I was sitting at work and I got an email from Cooper.  The subject was "I DID IT" and he sent a picture of his grades.  He brought his Social Studies grade up to a 66.3 D.  Haha!  Well, the fact that he cared at all is a total win.  Thank you to my dear friend, Bethany, for working with him so much to help him bring his grade up!  And thank you, Paul, for helping his mental and physical being with Adrenaline!  I'm so grateful for our friends who are always willing to get in the trenches with us!  

Speaking of our friends, we had several people offer to drive from Virginia to Boston to come get us!  For real!  You people are crazy!  Haha!  Love you all, so much! We will let you know if/when we hit a dead end and need that.  

Well, we just did all of Harlie's wound and trach care and she was NOT happy.  This morning, plastics came and pulled that drain line in her neck.  Luckily, we were not here for that. I feel bad saying that.  The truth isn't always pretty, that's for sure.

Oh, interestingly, one of the docs on the plastics team that we met right before they took her into the OR said he looked in her chart and saw that Dr. Magee was one of her surgeons from way back.  He said he knows Dr. Magee and he asked us how we ended up with him.  Dr. Magee and his wife started Operation Smile and when we lived in Norfolk, VA, I worked there.  So, after I had Harlie, I called him and he did two of Harlie's first jaw surgeries.  She had a cardiac code in the OR there, and that hospital (Children's Hospital of the King's Daughters) didn't have a cardiac program.  So, I couldn't take Harlie back there.  That is why we chose Boston, we knew we wouldn't have to worry about cardiac support.

Well, today that same doctor came to chat with us.  He said he was reading Harlie's history and he had a question.  He told us that he went to her surgeon and said, "So, I was reading Harlie's chart." And then her surgeon said, "I hope you had a drink."  Haha!  Man, I love a good sense of humor! Yes, her chart/history is crazy.  Anyway, he asked him if he knew if we had ever seen genetics.  Her surgeon said, we probably had.  But, we told him no, not really.  We did very early on (soon after Harlie was born), but there wasn't much to be said.  

Well, this doc is interested.  He asked if we would want to find out/learn more about why/how she is the way she is.  I told him if it were easy, yes, but if it would take effort on my part, then, no.  He said he would make it easy and he would handle the research/study for us.  Research away, buddy!  So, he returned with consent forms and tomorrow he will come back to take our blood.  So, we'll see what comes out of that.   

Here are some pics of our day so far...

It was raining too hard to walk.  So, we got a taxi.  We tried Uber, but there are very few Ubers now and there were NONE this morning.  Luckily, there was a taxi sitting out front of the hotel, so we jumped in.  On the way to the hospital the rain turned to snow.  

  

The view from Harlie's room.

Tom took the arms off Harlie's wheelchair so I can sit in it.  

Harlie suctioning her mouth.

At this point, I don't think she can see much at all.  And she can't hear.  And she can't talk.  Ugh, killing me, people!!!

Harlie knows the buttons by touch.

They brought her a bunch of ice packs, and we put them on her face.  She didn't even protest. 🙁

Plastics came by and brought her these eye ice packs.

This is when we were getting her all cleaned up, doing wound care, trach care and changing dressings. And we keep telling her we love her and that we are so very sorry. 

When Plastics came by they said this is a lot of swelling.  Sounded like it was a little more than they were expecting.  They have her on something for swelling, and we added some Lasix and a steroid to see if any of that helps.  

Her inner ear is still bleeding.  And now they can't see her ear drum anymore.  I swear, if something bad happens to her hearing (worse from the way it already was) from this, I'm going to lose it.  

We've received some gifts while we've been here - baskets, bags and dinners.  So, thank you all so much for the love.  We are so very thankful for each and every one of you! 

Well, that's it for today.  

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

Post-Op Day 4

Friday, November 1 (Post-Op Day 2)

We flew home Friday afternoon.  I was thinking that would be the worst day as far as swelling goes.  But, I was wrong.  It was Post-Op Day 3.  Anyway, this is how she looked right before we woke her up on Friday morning.

Post-Op Day 2

 This is her at the airport.

Post-Op Day 2

 She was in a great mood.  Very playful and cooperative.  I guess she was excited to be going home.  We definitely got some stares at the airport, but it wasn't as bad as I was expecting.  After I took the picture of her above, she wanted to take a picture of us...

  

 We couldn't fly Jet Blue like we normally do because their ticket prices were crazy expensive.  Over $250 MORE per ticket than US Air!  So, we flew a tiny plane home.  It was the kind where you had to walk on the tarmac then go up the stairs to get in the plane.  Harlie thought it was great.  They let us board first and gave us the first row.  At first, we had three separate seats on the plane, which clearly wasn't going to work.  So, they put me and Harlie together and Tom was just a few rows back.

The good thing about the smaller plane was that Harlie could stay in her seat AND look out the window at the same time.  She can't do that on the bigger planes.  So, that worked well.  She spent a lot of the time looking out the window...

The flight attendant was very nice and asked me several times during the flight if we needed anything.  And during the flight a lady in the seat behind Harlie tapped my shoulder.  I turned around and she handed me this piece of paper...

She said she drew it for my daughter.  She said her daughter is five.  So, I told her why Harlie looked like that and she was very nice, too.  Obviously she was wondering.  Which, I totally understand.  I would wonder, too!  Then she said that she could tell we take very good care of her.  I love nice people.  They make the world a better place.

My Mom and Dad picked us up from the airport.  When we got home the table was already set and the food was in the oven.  Grandma and Pap Pap had dinner all ready for us.  It was such a nice way to come home!  I had at least three helpings of everything.  I don't know why I was so hungry!  Then I fell asleep on the couch while the boys were going crazy.  That is so NOT me!  I was so tired!

Saturday, November 2 (Post-Op Day 3)

I had to force myself out of bed.  Cooper had a soccer game at 9:30.  I got out of bed at 9:10, brushed my hair and teeth and then took him to his game.  Inside, I was still asleep.  I am a terrible soccer mom.  But, I am cutting myself some slack.  Everything about me was exhausted.  Inside and out.  Brandy was working that morning and as soon as we got home, I went up and took a nap until she left.

After that I was still feeling very run down.  But, I got through the day.  Harlie was fine.  Really, she was.  Here she is playing outside for a few minutes...

Post-Op Day 3

In this pic, you can see how far her bruising goes down her chest.  Isn't that crazy?

Post-Op Day 3

 I took some pictures of the incisions (under her jaw) but they are pretty gross.  So, I will spare you.  She's still bleeding a little.

I took Harlie and Rooney for a walk that afternoon and came across a guy walking his dog.  Of course we had to stop and let the dogs say hi.  He saw Harlie and said hi to her and he did such a good job of not freaking out.  But, I couldn't stand the thought of him not understanding, so I told him that she just had surgery and that's why she looks like that.  He was very kind to her, and to me.

We had some friends over for dinner that night.  And when Marcy saw Harlie, she gave me a big hug.  Which was really nice because it is hard to see her look like this.  And I really appreciated her honesty.  I know people want to make me feel better by telling me she looks good.  But, I think she looks horrible.  And my stomach hurts when I look at her.  Even when she's smiling.  In fact, I think it hurts more because she is smiling.  What a brave, resilient girl she is!  I am the one who is weak now.  I think I need pain meds more than she does!  She can look at her picture and her reflection in the mirror and it doesn't bother her at all.  I'd give anything for her to talk to me and tell me what she's thinking.

Anyway, Marcy said at the end of the night that they had to go because I looked so tired.  I was exhausted.   Like not myself exhausted.  Yet, Harlie was up and running around, playing and smiling, and not complaining at all.

I got a good night's sleep and woke up feeling MUCH better, and much more like myself.

Sunday, November 3 (Post-Op Day 4)

Harlie is still happy and not complaining.  I put her hair up in two bows because her hair keeps sticking to her incisions (they are still bleeding a little).

Post-Op Day 4

 As long as her incisions are bleeding, I am not sending her to school.  And even with the bruising, I don't want to send her.  They are out on Tuesday for election day, so I guess I'll see how she looks then.  I think that bruising is going to be there, changing colors for a while.  So, I don't think I can keep her home the whole time.  I'll just have to think it over.

Anyway, Tom took the boys for a bike ride this morning and I took Rooney for a long walk, while Brandy came over to stay with Harlie.  Tom and the boys and me and Rooney met up at our local Starbucks to see a bunch of our running friends.

I am still nursing my piriformis injury, so no running for me yet.  I was making good headway on it until we went to Boston.  But, at least I can see the light now.   I have been seeing Rob Green at Active Chiropractic for a few weeks now.  He gave me some exercises to do and I get e-stim when I'm there.  I've gone several days with zero pain, and that's a first since July!  So, I'm very happy about my progress. I am going to be smart about this and not jump back into running too soon.

Well, that's about it for now.  As always, thank you so much for all your love and support.  Without it, we'd be mush for sure.

Much love,
Christy xo