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.

Make-A-Wish and Family Photos

The time has come for Harlie's Make-A-Wish trip. Well, the planning part anyway. 

I really put off this whole MAW thing for years (obviously). Her social worker at CNMC had mentioned that she was going to put a referral in for Harlie many years ago (right after Harlie's near death experience in March of 2018). I didn't really want to think about it back then, so I never followed up. It also took Harlie about a year to fully recover from that hospitalization, so I couldn't think about MAW at that time. 

Anyway, it was the summer before she turned 17 that I saw a commercial that said that it is only for kids under 18. Realizing that she was going to lose her chance, I knew I couldn't put it off any longer. Just a few days after she turned 17 (in 2023), I wrote to one of her cardiologists about it. The approval came THAT AFTERNOON! Isn't that crazy? 

Then we had to do a zoom meeting with a MAW volunteer and let Harlie meet her and answer some questions. We had to figure out what Harlie's wish would be. So, we asked her, "Harlie, if you could have anything you wanted, what would it be?" She replied, "I'd like to make bracelets." Um, no. Think bigger. "I'd like to see Wild Kratts Live." Bigger! (We took her to see Wild Kratts Live in May 2024. The tickets were a Christmas present that year.)

So, we asked her if she could go anywhere, where would she like to go? She said "Japan!" Too big. Haha! She says she likes the architecture and flowers/trees in Japan - and the ninjas. Haha! Then she said, "I'd like to go on a safari, like you did." Yes, when I worked at Operation Smile many moons ago, I went to Kenya on a work trip and then went on some safaris with some work friends. That was such an amazing experience and man, do I wish we could give that to Harlie. But, still, too big. MAW doesn't do international trips anymore. So, after some thinking and researching, she decided she would like to go to Hawaii. 

There's been quite a few hoops to jump through. They had a hard time with us not wanting to take a nurse with us. We just aren't there anymore with nursing. We would have to start all over with a nursing agency and we don't have any interest in that. So, that took some effort. They eventually said we don't have to take one. Murphy is over 18, so that took some effort, too. Regardless, all was approved. 

They sent us a worksheet to help us figure out which island we wanted to go to and what we wanted to do while there. Based on what she wanted to see and do, we selected O'ahu (also it is the island with the hospital, haha). Then they gave us a window of travel and we had to pick good/bad times to travel. I selected Murphy's spring break first, since I knew it would be hard/detrimental for him to miss a whole week of his college courses. Then we just had to wait for our time to come. 

Now, it is almost Christmas 2024 and we just got our dates for travel - March 8-15th, Murphy's spring break. We got our first choice!

I'm already stressing about it. I know that this is what they do, and they will do an amazing job. But, at the end of the day, we have to travel, and traveling is not easy for me. There will be packing and medical stuff, oxygen and her chair and long flights. What if she gets sick right before? Or while we are there?! We are going to have to ship some of her medical stuff, and we are going to have to rent some stuff while there. We can't take her power chair on flights, so we'll have to rent a chair for her there. 

Also, I know MAW is an amazing organization and I am grateful that it exists. However, no one wants to qualify. Well, I guess I can't speak for other parents. So, we didn't want to qualify. There's a whole emotional thing that goes with the reality that your child is getting a wish granted. I would give anything for her to be a healthy 18 year old who is off to college or work or wherever she would have wanted to go. I'm guessing she would've wanted to go off to college because she loves learning and she loves her independence. And the girl has goals - a doctor for babies and a veterinarian! Man, I can't let myself think like that... Instead we are working on a legal guardianship for her and a MAW trip. 

So, this isn't going to be easy for me. Just thinking about it brings me to tears. There are just so many feelings. Sometimes there's a fight,  or a tug of war, rather, between the grief in me and the gratitude. Either way I come out crying. Unfortunately, in life, the good doesn't cancel out the bad. All the MAW trips in the world wouldn't change what is difficult or impossible to manage. And they wouldn't give us back what we've lost. I do try so hard to be grateful - but I'm learning that gratitude isn't the Tylenol for grief. I'm going to feel sad about what we've lost no matter what. 

But, at the end of the day, I want Harlie to see things and experience things and this is something we could NEVER give her on our own. I also want us, and her brothers to have as many great memories with her as possible. So, I'm really hoping this all comes together so those things can happen. 

Since I haven't posted pictures in a while, here are some photos our dear friend Paige took back in November. Paige has been photographing my family since our engagement photos in 2002. 

Here is Paige. 🙂

I took some pics before Paige arrived.

Here are more of the ones Paige took.

Well, that's it for this post. Hopefully, I'll have time soon to write more. You know I have lots to say, haha! Thank you for reading!

Much love,

Christy xo

Liver Update

Well, it's been like eight months since my last blog post. I started this post back in February. I think I'll just start with what I wrote then and go from there..

February, 2024, Fontan Associated Liver Disease (FALD)

Hi. Harlie had her appointment with the hepatologist (liver doctor) on February 16th. I really felt like a fish out of water there. Since kids typically don't have liver issues, there really aren't many pediatric hepatologists out there. So, we had to see an adult doctor, who sees all adults. Well, except for Harlie, of course. We definitely got some stares and I'm sure people were wondering why the hell a little girl was seeing a liver doctor. She definitely does not look her age.

We saw a fellow or resident first (I can't remember and it really doesn't matter in this situation). He did the fibroscan (ultrasound) of her liver. Before he did it, he said that if the scan comes back that it is soft (which is good) then great. But if it comes back that it is hard (which is bad) there could be two reasons. One reason is that it is in some stage of cirrhosis. Another reason is that is "just" full of blood. So, if you think of a water balloon - the more water it has in it, the harder it feels. This is said to make one feel better, I suppose. But, I think the fact is that the liver should not be so full of blood that it is hard. I also think that in Harlie's case (a Fontan patient) that the liver being full of blood all the time is what causes the cirrhosis. So, again, I don't feel any comfort. 

Anyway, he did the ultrasound and then just left the room. I figured then that the scan wasn't good. I guess technically, he's not allowed to talk about it either way. But, I got the impression he didn't want to be there anymore. Ha, you and me both, buddy! He returned with the doctor. He was nice. But I definitely got the impression that they don't normally see teenagers in that practice. It just feels weird - and tiring - to always be cutting our own path vs. walking on a nice, established sidewalk. 

He said that if he just looked at her ultrasound/scan, then it would tell him that she has cirrhosis. Since it could be that it is "just" full of blood, he can't say with certainty. The only way to tell exactly is to do a liver biopsy, which is invasive and unnecessary at this time. He said if she were being evaluated for a heart transplant, for example, then they would want to know exactly how her liver was, so a biopsy would be necessary then. Luckily, we aren't there - yet. 

He said he wanted to get some blood work and he would be able to see how her liver is functioning. There's also a MELD score, which measures kidney function, liver function, blood clotting time and sodium level. So, you take all that information together to get a picture of how her liver is doing. Clearly, he didn't have all that information at the time, so we couldn't go over everything in person, which is a shame. He said she needs to be seen every six months. This sounds rather aggressive for something you really can't do anything about.  

Later that afternoon I received a bunch of notifications that information was available in her portal. So, I went and looked. Her fibroscan came back as Fibrosis = F4. I, of course, had to Google it... 

Ranges from stage F0 (no liver fibrosis) to F4 (liver cirrhosis). Stage F4 is also called liver cirrhosis, the final stage of progressive liver fibrosis.

Damn.

Luckily, her bloodwork all came back okay. Her MELD score is low, so that's great. She does have blood clotting issues and that's why she's had to see a hematologist. We've never really understood that - but maybe her liver is causing that issue. I'll have to ask when we see her hematologist again. 

I will admit that when I first saw the F4, it was pretty upsetting. It took me days/weeks to process it. Okay, fine, I'm still processing it. I mean, how do you manage that in your brain? She's only 17. But, I have to try to "ignore" that and focus on the MELD score and her other labs. As long as those are good, I guess that has to be good enough. Ugh, the games I have to play in my mind to make life be okay.

Her liver just feels like a ticking time bomb. I mean, really, it is only a matter of time till her labs begin to be affected. Then what? What will that look like? 

It is the same situation with her pacemaker. It is only a matter of time till her pacemaker gives out and needs to be fully replaced (not a simple surgery). It is also the same situation as her TMJ infection. It is only a matter of time before the antibiotics will not be able to fight off the infection and she'll need her left TMJ replaced. If I'm being brutally honest, it is the same situation as her heart. Eventually that will give out, too, and we'll be facing a heart transplant. As one doctor told me, sometimes the hearts can outlive the liver. Hard to say what will happen and when. 

Wow, I feel like this took a dark turn. But, it is our reality - whether I talk about it or not. I have been packing these fears away for many years. I remember when we met with Harlie's heart surgeon after her DKS surgery (her 3rd open heart surgery). He was originally planning on doing her DKS and Fontan operations at the same time. He changed his mind and decided to only do the DKS. I remember that Tom and I were pretty bummed because we didn't want to still have another major open heart surgery looming ahead. After the DKS, he told us that he never could have done both surgeries at the same time. He said she has "the world's worst scarring" and it took him forever to get through it. This meant she would be on the bypass machine too long - so he wouldn't have had time to do the Fontan, even if he planned or wanted to. He also told us that her heart would likely run out of gas in her late teens/early adulthood. At age three, that sounded so far away. At almost 18, that feels like right now. 

November, 2024

So, that's what I started eight months ago. Since then, she's seen a liver doctor two more times and turned 18. On August 30, she saw the same doctor for her six month follow up. Sometimes going to appointments wear me out. On this particular day, I knew we were going to the adult facility. So, I tried extra hard to give myself extra time for parking. That parking garage is terrible and I hate the elevator so, so much. There are two relatively small elevators and there are usually so many people in them that it can take several tries before we can get on an elevator with Harlie's chair. As I was about to pass the main entrance of the hospital, I was thinking about that and saw the valet line. I knew the elevator to get to her doctor was right near that entrance and in the last 18 years, I have NEVER used the valet parking. So, I decided to do it this time. I got in line and watched the guys work the line. OMG, so slow. He finally got to me and I asked him how much it cost, I think he said $5. But cash only. I didn't have any cash. Ugh. So, I got out of the line and headed to the dreaded parking garage. I drove through the entire garage and there was not a single spot to park. In one level, we were all stuck for five whole minutes. At this point, we were going to be late for our appointment. Not feeling like I had much of a choice, I returned to the valet line. I was thinking I would go get cash back from a purchase. As we were headed to her appointment I realized I didn't even have my debit card. So, I really had no way to get cash. Well, damn. This worried me for the rest of the appointment...

Anyway, the doctor ordered a vascular ultrasound two weeks in advance. So, when we were there he told us that her ultrasound showed that there's no liver cancer. Apparently, patients who have FALD are at an increased risk of liver cancer, so that vascular ultrasound was to check for liver cancer. I'm kinda glad I didn't know that. He also mentioned that we might want to switch to a different doctor. Back in the spring of 2024 VCU hired a pediatric hepatologist and he has been focused on research, but is supposed to start seeing patients soon. Other than that info, nothing else changed medically speaking since February. So, that's good. I made a note to see if that new doctor was available for her next appointment in six months.

Then, we headed back to valet to get the car. Ugh. I went up to the lady with my ticket and said, "Um, I think I have a problem." She said, "There are no problems." Ha! I wish! Anyway, I told her that I was so sorry, but I had no cash and no debit card. She said, "Well, there's no way you would've known that our credit card machine is broken, so today is no charge!" She was so nice! What a relief! Tom made fun of me because I was so worried about not being able to pay. Still had to wait over 30 minutes for my car to arrive, but you take the good with the bad and overall, I was happy. Super hungry (our appointment was 10:25 and by the time we got out of there it was well past 1pm!), but glad to be able to just load her chair in the car and go.

Just a few weeks later I received a call from a scheduler at VCU. She said that Dr. Karpen wanted to see Harlie and he was available October 2nd. Wow. That's kinda crazy. I read his bio, he seems impressive and I feel like we are lucky to get a pediatric hepatologist here in Richmond! I hope her insurance is okay with her seeing another liver doctor just over a month later. But, super convenient to have a doctor call me to schedule an appointment! I wish they were all like that! Haha! Bonus, too, he was going to see us at the Children's Pavilion - which is SO much better than going to the adult facility! No more parking worries! Woohoo! It must sound crazy how the "little things" like parking or elevators stress me out so much.  But, that's just the way it is.

When he came in to see us he said that we were his first patients at CHOR! Obviously not his first ever, of course. He was great and I really liked him. He ordered more labs and we spent a good amount of time letting him get to know her medical history and him explaining some stuff about liver disease. 

Honestly, we don't know anything more than she's at a much higher risk for FALD and liver cancer. Not only is she a Fontan, but she lived with really high pulmonary pressures for most of her life, which is not good for the liver. If I remember correctly, he doesn't think the fibroscans give accurate information. So, I'm just going to put that F4 rating out of my mind. He also has a better follow up plan - one year! So, hopefully, he'll still be at VCU next year and we'll get to see him again. 

That's it for her liver update. Overall, I feel better about it than I did in February. It is so easy for me to think about all the bad medical "luck" she's had over the last 18 years and immediately go to the worst places in my head. I have to work really hard to try and quiet those voices/fears and get myself in a better, less worried place. Until next time, of course. Then I get to do it all over again. 

Since it has been so long, I have a lot more I could share. But, I won't do it in this post. Hopefully, I'll get to work on my next post soon. 

As always, thank you for caring about our girl! 

Much love,

Christy xo

Heart Update

Hi. Here's another thing that's been on my mind - Harlie's heart. l think I'm just going to think out loud and hopefully it'll make some sense.

She has a Fontan (simple description - she is a single ventricle and her circulation works entirely different than a normal heart). 

She's had some NSVTs (non-sustained ventricular tachycardia) in August and October. I've tried to google this - but I think NSVT is different for patients with congenital heart disease. I don't need to know more than I need to know, so I just need Harlie's doctors to explain what it means to HER. 

She has a pacemaker. The wires that were put in her heart were put there during her very first open heart surgery when she was just four days old. That means that those wires are now over 17 years old. Apparently, that's getting old as far as pacemaker wires go. This issue has me confused. We've seen several Electrophysiologists (pacemaker docs) and I gotta tell you, I don't understand it. The next appointment we have, I'm making Tom go with us because it is impossible for me to go to an appointment that I don't understand the info - then come home and tell Tom anything useful about the appointment. 

I'm going to try to explain why I'm confused. The pacemaker has wires that go into her heart. They connect to the generator (battery) that is in her abdomen. The generator was put in when she was five years old. Oh my gosh, my memory is going bad. I can't remember how many times the generator has been replaced! Once? Twice? Ugh. Okay, I just searched my blog and found a post that I started writing about this subject and never finished! So, she had her first generator replacement surgery on May 6, 2022 (she was 15, so the first generator lasted 10 years). 

For a year to months prior to the first generator replacement, we had regular check ins and we watched the battery life decrease. When they put the magnet thing on her abdomen, it reads all the info from the generator and the battery and the computer will try and predict the battery life remaining, based on current usage. The more the pacemaker has to fire, the more battery it uses. With the first generator she had (from age 5-15) we had to call in pacemaker transmissions from our home phone. Leading up to the generator replacement was kind of stressful because they would be like 6 months left, 5 months left, 4 months left and I'm like so schedule it already! Anyway, so it was finally replaced in May of 2022. The new generator is awesome and hooks up to Harlie's tablet, so they set the transmission frequency so we don't have to do anything! That's my kind of device, haha!

During Harlie's TMJ surgery in April 2023, I remember the docs struggling with her pacemaker settings. Anytime she goes into surgery, they have to change the settings to be stronger or something for when she goes under anesthesia (also, it depends on what equipment the surgeon is going to use - some equipment can make the pacemaker do stuff the don't want it to do). After surgery, they change the settings back. While she was recovering in Boston, they asked me if I had heard anything about her wires. I was like, um, no. So, when we had her appointment with her pacemaker doc in August of 2023, I asked her if she received any clinical notes from Boston. She did and she noticed some readings that made her put a 48-hour Holter monitor on Harlie. She said that the wires are showing signs of age. I don't remember her words exactly - but the way I understood it is that she was having to adjust the way the pacemaker works because one of the wires wasn't working consistently, or something like that. That's when she told me that 17 years is getting up there in age for wires. 

She told me the signs to look for should the wires stop working. She said that Harlie would be lethargic and might not feel well and her heart rate would be less than 60 beats per minute (the pacemaker doesn't let her heart beat get below 60bpm). She said if the pacemaker were to suddenly stop working, her heart has an escape rhythm of about 30 some beats per minute (what her heart would beat on it's own - without the help of the pacemaker). So, we would be able to get her to the hospital. I wasn't told any of that when we were just looking at the battery dying. So, it sounds to me that the wires are a totally separate issue than the battery life. I mean, they can see how much battery life is predicted any time they want. So, it shouldn't run out of battery all of a sudden with no warning. 

So, when are these wires going to stop working? Replacing the wires is a bigger deal than just replacing the generator because the wires are in (or on) her heart. Of course, no one can tell me. So, one day in September, she could barely make it from the school bus to sitting in the chair in the kitchen. She didn't feel well, she looked terrible and was super tired! So, I ran and got the pulse ox and just knew that her heart rate was going to be less than 60bpm. But, it wasn't. So, then I took her temperature and she had a fever. So, I knew it wasn't a heart thing. Then we realized she had Covid. But, seriously, how is a parent supposed to live like this?! 

Then in October she had that TMJ surgery in Boston. During that hospitalization she had another run of NSVTs plus she had really low blood pressures. I can't remember if they upped her pacemaker low or if her cardiologist did it after - but around this time they changed her low setting from 60bpm to 70bpm. They also said that she needed to go on a beta blocker for the NSVTs and they wanted her to stop taking the Enalapril (she's been on that her whole life) because her blood pressures are too low. While that might not sound like much - that's three new things! 

We came home from Boston on October 14th, I believe. Then on Tuesday, October 24 - Harlie had an appointment with her local cardiologist to follow up on all her heart stuff. I really like him and was looking forward to talking with him. I just felt like he would give me his opinion on what is going on with her and he would tell me how worried I should be. Plus, I think he could help me understand this wire thing. 

When we got there she got an echo. That took about an hour. Apparently her anatomy makes imaging difficult. Plus, she has a lot of scar tissue around her heart. At any rate, the echo shows all her normal issues - no new issues, so that's good. While they were doing the echo, I emailed her cardiologist the clinical reports from Children's National and from Boston. That's when the doctor doing the echo told me that her cardiologist wasn't in town and we would be seeing a different doctor. Ugh. Seeing a new to Harlie doc versus a doc that we've known for 17 years are two totally different appointments. I wasn't prepared for a new to us doctor. Her cardiologist emailed me right back and told me why he couldn't be there and who we would be seeing instead. He told me that I would like him. 

While he was right (I liked him fine) it wasn't the same appointment I wanted it to be. There was also another person with him. She was a transition coordinator or something. The doctor said the same thing her other doctor said about what to look for and her escape rhythm, etc. Okay, so when will her pacemaker need to be replaced? No one knows. Since this wasn't a cardiologist with whom I have a good relationship I couldn't say, Cut the crap, doc and tell me! Haha! 

So, then the transition coordinator took over. She basically talked about what it looks like after kids turn 18. It is complicated (no surprise there) because for some of her medical issues, there aren't adult specialists who know congenital issues, so she will have to keep some of her doctors. But, since kids with congenital heart disease are living longer, they have developed a new specialist - an adult cardiologist who specializes in congenital heart disease. I think she told me it takes like 25 years to develop a new specialty. Anyway, I wasn't prepared to have this kind of conversation. I know she's getting older and that's great and all, but change is SO hard for parents who have children with chronic health issues. When we find people we like and trust - and they like and trust us, it is so incredibly hard to lose them - or have to start all over with new people who don't know us at all. So, listening to her and starting to think about all the changes that might happen - well, I started to cry - and I hate to cry. Especially in front of someone I just met! I mean, I have a reputation to keep - I can't be crying at appointments! Then she told me that she makes someone cry once a week - or some kind of lie to make me feel better.  

They also told me that Harlie has to start seeing a Hepatologist (liver doctor). They don't have pediatric hepatologists because kids don't have chronic liver disease, I guess. But, with kids with Fontans, they know that a certain percentage of them can develop liver disease. Here's what I read:

One of the hallmarks of Fontan circulation is permanently elevated central venous pressure, which leads to congestive hepatopathy. Subsequently, liver fibrosis, cirrhosis or hepatocellular carcinoma may occur, all of them constituting an entity called Fontan-associated liver disease (FALD).

Since Harlie is 17, it is time that she started to be watched for this. It sounded like this was the normal process for kids like her, so they would schedule an appointment for us. 

I am especially worried about Harlie, because she is not just a Fontan. She also has lung disease and her terrible airway. For many years she had very high Fontan pressures. She's been on Sildenafil (viagra) for four or so years I think. That has helped and definitely brought her pressures down. But, clearly she's had way more years with higher pressures than with lower pressures. So, what does that mean? Is there a scale of how bad her liver is? Are there signs? I'm told there is no treatment or ability to stop it from happening. I guess if a patient has a good heart, but their liver gets bad, they can get a liver transplant. I really don't know much at all. 

I don't remember how I was notified, but months ago, I was told that Harlie had an appoint with Hepatology on January 30. I wasn't feeling well, but obviously, I had no choice but to go - I mean we've waited three months for this appointment. I wanted Tom to go with us since this was new information and I didn't know what I was going to learn. But, his work schedule didn't allow it. The day before the appointment, I get a call to check in. She said she was checking Harlie in for her GI appointment. Confused, I said, no, this isn't supposed to be a GI appointment, it is supposed to be for hepatology. Also, we already have a GI person, and this was not our GI person. So, I said does she handle hepatology under the GI department? She said, yes, she does. I looked and Gastroenterology, Hepatology and Nutrition are lumped together on VCU's website. So, it kinda made sense that the scheduler said GI appointment. Okay, fine. 

So, the next morning, Harlie and I head on down to VCU. We check in and are shown to the exam room. The nurse gets her vitals and then asks, "Do you have any GI concerns today?" Um, no. So, I said, "This is not supposed to be a GI appointment. This is supposed to be a hepatology appointment." 😑

We all know where this is going. 

The GI nurse practitioner comes in and immediately apologizes. There's been a mistake. Not sure how it happened, but somehow her hepatology referral got changed to a GI referral. She said something about since they don't technically have a hepatology department. Needless to say, I was ticked. Like, for real. I told her that Harlie missed a day of school, I missed a day of work and we've been waiting for this appointment for three months. UGH! Does no one care about my mental health?!?! 

I know it wasn't her fault - and I told her that as well. But, also, we already have a GI person! Ugh. She said that she was sorry and all that stuff. But, then said that she was really glad we were there because our food order for Harlie had expired and she was surprised we were still receiving her food order from the supply company. Apparently some higher being requires that patients be seen every freaking six months to get food. Are you kidding me? She's 17, done growing - so there are no changes to her food order. Absolutely no entity thinks about the special need family when it comes to care. At this point, I will never be able to work full time again (well, get paid for working full time, I mean). 

We left and I was really feeling so crappy. Literally every aspect of caring for her is harder than it should be. How is this sustainable? It isn't. This is another reason why I am feeling so burned out, overwhelmed, alone, etc. 

Plus, I didn't get to learn anything about her liver. Also, I just want to say that any comfort I might have felt that this is the normal process for kids like her - is gone. It doesn't feel like kids see hepatologists around here. This feels like it isn't normal at all. 

The next day I got a message to call and schedule an appointment with a hepatology doctor and they gave me the number. I called and after holding for 15 minutes, they told me they were going to have to call me back. Of course. They called back and told me that they were going to find a place for her but it would take some time. The next appointment was in April. Part of me wanted to say that it isn't urgent. I mean, I don't think it is anyway. But, then I was like, oh well, I guess I'll let them work us in. A few days later, they called me back and gave us an appointment for February 16th. Wow, okay. 

I have no idea what to expect. Will they draw labs? Do any other tests? Or just talk about it then set up tests later? I don't know. Sometimes stuff like this weighs so heavy in my mind. On the good days, when I feel stronger, it doesn't bother me as much. I guess the stronger I am, the deeper I can bury it. If you've ever had to dig a hole in your yard, you might be able to get it. I don't know. Today, as I'm writing this, it feels pretty heavy. Like, my stomach hurts as I'm thinking about it. So, I'm going to take a break. Harlie is home sick again today, so I'm going to go do some stuff with her, then I'll come back and finish. 

A few days later....

Today is Friday, February 9th. It has been a few days since I started this post. Today, I am really struggling. I think I'm going to start a new post, since that will sort of be a new topic. I'm trying really hard to keep my posts a little more focused.

Harlie has missed another three days of school this week. I'm not sure what that's about. But, she has picked up her guitar a lot lately, so that's cool. 

Also, here's a Facebook memory from a few years back. 

Here was the other picture.

I forgot to mention in my TMJ post that she appears to have more facial paralysis since her TMJ surgery in October. Her smile isn't like that anymore. I'm not sure if she will regain it or not. I guess time will tell. Makes me sad right now, though. 

As always, thanks for checking in!

Much love,

Christy xo

TMJ Update

Hi. There have been some developments with Harlie's TMJs since I last blogged. 

Here's a recap:

April 2021 - She had her first prosthetic TMJs placed on both the left and the right.

May 2021 - a growth appeared at her incision sites, I took her to several doctors to try and find out what it was. Just yesterday I found a clinical note from one of the docs we visited during this time period. Her note said that mom was overwhelmed and teary at times. Yes, it was a VERY hard time because people were still nutzo about Covid and getting Harlie in front of people with a serious issue was such an unnecessary battle. 

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 spacer in it's place. 

October 2023 - a new right TMJ was placed, and the left TMJ was repaired since he found it to be dislocated.   

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. Unfortunately, I've noticed that there's been a major problem with getting any kind of customer service when it comes to medication. I get that the pharmacists are over worked and under paid, under appreciated, etc. But, at the end of the day, my kid needs this medication. I know that they don't know why she's getting this medication (I think a lot of teens take Doxy for acne) - but they really do not care if she goes days or weeks without what she needs. I'm the one who has to figure it out, feeling like I have no help. This became a huge stressor and just remembering it now as I write this makes me so mad. I mean, I am at our local pharmacy so often and I see the same people (for the most part) over and over and there is never any type of recognition that they've ever seen me before. Or that we just had the exact same conversation about trying to get Doxy two weeks ago. I just don't understand. 

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. 

I'm guessing that you might know where this is going...

On the 20th of January, I was getting Harlie ready to go to Caylee's baby shower. I looked at her incisions (which is now just something I do on a regular basis) and noticed a bubble/blister looking thing on her left side. I really can't describe how I felt when I saw it. Honestly, I think I just couldn't deal with it. I told myself there was NO way this was happening again. It was just some other weird thing. 

But it isn't. I know it. It looks exactly like the very first growth that appeared that summer in 2021. I just can't believe it. I mean, how can this be? ARE YOU FUCKING KIDDING ME?! Can this girl catch a break, please? OMG! I just don't know how much more we can ask of Harlie and her skin, which has been cut so, so many times. Too many times! Under her jaw is all scar tissue at this point. 

I am feeling so overwhelmed right now. I just don't know how we are going to do this again. I don't. It is too much. I'm telling you - it is TOO much. I just can't even think about them having to replace her TMJ, AGAIN. I do not ever want to return to Boston Children's Hospital. No offense to BCH, but I am so done going up there. If I had known at the beginning that we would STILL be going up there 12 years later, I don't think I would have ever started. 

I just want to say that going out in public (or a baby shower to celebrate someone I love) while I'm trying to process heavy shit is so fucking hard - and it is getting harder. It is like I have a bucket of water and everything is fine until it fills up too much, and then it starts to spill over, unpredictably. I want to emphasize that word, because I go out with full intention of being able to keep my damn water in the freaking bucket! So, instead of being like, yes, the food is so good, your hair is looking fabulous, I love your sweater, etc. I'm like Harlie's infection is back, I shouldn't have brought her, she can't hear a thing in this loud room and no one can hear her so she's just sitting there and she can't play these shower games and my heart is breaking into a million pieces.  Like, I'm carrying it and it is fine until I bump something then I spill water everywhere and then, I'm like, oh shit, sorry I got my water all over you at this baby shower. Then, after I get home I think about it and I feel terrible that I spilled the water and I beat myself up that I wasn't stronger to keep my water it in the bucket. 😑 Luckily, I was with great people and I know they are okay with me spilling my water on them. But, I still feel terrible about it all. I want to keep my water in the bucket. This is one thing I'm working on with my therapist - being kinder to myself. I am totally fine if my loved ones accidentally spill their water. I shouldn't have different rules for myself. These are all the thoughts that run through my head, on repeat, and it is exhausting. 

Anyway, it took me to the 24th for me to email her ID doc and send her pictures. Not that she needed to see them, really. I mean, they look exactly like what she's seen before. Anyway, she emailed me right back and called in a script for Doxy. We scheduled a zoom meeting for the 26th (Dr. Hahn is in DC). 

Ugh. I just can't. On the 26th, I noticed that I had not heard anything from CVS (she called it in on the 24th), so I called. Fifteen minutes later I get someone on the phone. They only have two bottles of Doxy and they don't know when they are getting more. "Its on order" she said. I've heard that before. She told me that a different CVS has four bottles and another one has six. I just can't do this again. 

Another update I don't think I've talked about is how we had to start a beta blocker for Harlie's heart issue that came up since August or so. It was an issue in Boston that bought her a longer stay in the hospital. Anyway, it is a compounded medication, which requires us to go to a specialty pharmacy (not CVS). So, I suppose if I'm already going to a different pharmacy, maybe I should send the Doxy there. So, I call and a REAL PERSON answers the phone! He said they have to order it and would have it the next day. Also he said they will try to make sure that they have it when she needs a refill each month. So, I sent an email to her doctor asking her to send the script there instead of CVS. While I am certainly NOT happy, I do feel better about not having to deal with CVS regarding this particular medication. 

Also, on the 24th, I was at work. I missed a call and I recognized the number, but couldn't remember why. Then I got an email message to call the nurse at Harlie's school. Ugh. I know it sounds crazy, but for a few seconds I sort of panic. I mean, it's a "controlled" panic, in that I don't think anyone would be able to look at me and know that I'm freaking out on the inside. But, I was. The school nurse put Harlie's nurse on the phone and she told me that Harlie was having some shortness of breath, (or labored breathing? I can't remember) a scratchy throat and increased secretions. But, her sats were good and she didn't have a fever. She said they had been sitting in the clinic for a few minutes and she seemed fine and she said she wanted to go back to class. So, they did. 

But, when she got home, her voice sounded really strained and she didn't look like herself. She ended up staying home Thursday and Friday. I can't believe it took this long to get to her. Crazy. Seems like we aren't even giving it to each other. There are days in between one feeling better and one feeling bad.

We had our zoom meeting on Friday. I like this doctor so much. I guess if you're going through something crappy, it is really nice to have good people in your corner. She asked me when I first noticed the abscess, and I had to admit that it took me several days to let her know. I just knew there was no denying it once I told her. She said she got it, which is one of the reasons why I like her so much. I wasn't able to actually start her on Doxy until the 27th. She said that I need to check in with her in two weeks. Hopefully the abscess will respond. I'm not even going to talk about what we do if it doesn't respond. We'll have to cross that bridge when we get there. 

Since January has been so crappy, I haven't taken any pictures. Well, except of the dogs. They are always cute, no matter what is going on in this crazy house. So, here's Mabel, since it has been a while.

That's my blanket she's stealing, by the way.

Mabel staring down a squirrel.

As always, thanks for reading! 

Much love,

Christy xo

January 2024 Update

Hi. I've started this post several times. I get overwhelmed and put it down. I mean, if I get overwhelmed, how the heck are you going to feel when I try to update you?

Here's the short version - I'm struggling. I don't know why this is so hard for me to share. I mean, it shouldn't be surprising and I would never think badly if/when someone in my shoes is dealing with this. But, I have caregiver burnout. 

There. I said it. Life is really difficult right now. I wish I could be more positive. I wish I could share my life without feeling like I'm complaining. I have tried really hard to hold on to being grateful, positive, optimistic (I'm wearing a shirt that says "optimistic" on it right now!), hopeful, etc. for the last 17 years. I've wanted those feelings to be bigger than my anger, sadness, disappointment, grief, etc. But, I'm losing my grip and it feels like my anger and grief are starting to take over.  I'm at the point where things that should sound like fun - feel like work to me. I just don't have the energy. When it comes down to it, there are things I have to do, regardless of how much energy I have (Harlie's care, making appointments, taking her to appointments, managing supplies, equipment, etc.) so in order to reserve energy, the fun stuff has to go. There's just not enough energy left over for it. 

If you've been reading my blog since 2018 (the "bad" year) then you wouldn't be surprised to hear that I started to see a grief therapist that year. After we had some too close calls with Harlie in 2017 and 2018, I had several friends give me the same therapist's name (and I didn't even ask, haha!). So, I called her in the spring of 2018 and started seeing her. I've been going to her every now and then ever since. I took a long break, but this past November, Tom said I should go see her again. He said he was going to call her if I didn't. So, I did. She's been really helpful. She sent me this image and it is exactly how I've been feeling. Well, maybe adjust some of those labels, but you get the idea. 

I think most people think of grief when it comes to the loss of someone. But, with a child like Harlie, there are many losses over the course of her life. Plus, there's anticipatory grief, because we know that her body will struggle more as time moves on. Of course, the holidays didn't help. Harlie's surgery in October (while it looked short and easy to most, it kicked my ass), planning the We Heart Harlie & Friends Turkey Trot in November, Thanksgiving, Christmas then New Year's - whew! Too much going. Too much planning. Too much doing. Too much eating. Too much drinking. It was all too much. Plus, every New Year's there are so many Happy New Year's! Yay! Looking forward to a great 2024! 

Then there's me, saying with trepidation, Yea, um Happy New Year??? 😬 I mean, I just don't know what the year is going to bring. I'm way more suspicious than excited about 2024. Plus, I knew I wasn't feeling great by New Year's Eve (meaning I could feel a sickness coming on). I couldn't even enjoy a full glass of wine or bourbon (gasp!) and barely made it past midnight. A group of us did the stairs on New Year's morning. The stairs are in a park and I think it is 140 stairs or something and we just walk up and down until our legs shake. Tom did 24 sets in honor of 2024. I decided to honor 2016. Haha! Honestly, that was probably one of our best years. Harlie didn't have a trach then. Oh, the memories can be so pleasant and so painful at the same time. 

Anyway, after that my body was like, nope! I clearly pushed it too far and ended up very sick. I was down for the next nine days. It really sucked because the kids were home from school the first week of January. I couldn't do anything. Poor Harlie. She knew to keep her distance from me. So she stayed in her room the entire week! I barely took care of her. It was awful. I couldn't order her supplies. I think I was only able to wash her hair one time - and I couldn't blow her hair dry at all. I think she gave herself most of her meds. I had to get Murphy to help me with the morning dose when he was here. 

We are having a lot of trouble with Harlie's power chair. The battery struggles to keep a charge. So many times she goes to use it (after charging) and it indicates that the battery is dying. Like on Halloween. We charged it, then we unplugged it and turned it on, and there was only one light. So, we couldn't use it that night. So frustrating when that chair is like her legs. Imagine not being able to walk when you were planning (and looking forward) to taking a walk? Anyway, we scheduled an appointment to have them take a look at it and that was scheduled for Jan. 2nd. There was NO way I could go. So, Murphy took her chair for me. He is so incredibly helpful sometimes. I know community college isn't the most popular - but it sure has it's advantages and I love having him home with us. Anyway, they ordered a new battery. Who knows when that will come in. 

I finally was able to go back to work on the 10th. Then, on the 15th, Tom got sick. I don't know what I had (never tested for anything). Tom thinks he had the flu. I don't think I had the flu. Anyway, he missed a whole week of work, which has never happened! 

We had tickets to see Annie the Musical on the 17th. Since Tom couldn't go, I asked Caylee if she wanted to go with us. She did and we had a great time! Murphy and his girlfriend went on the 16th. Tickets were one of his Christmas gifts to her. Me, Caylee, Harlie and Cooper went on the 17th. None of us had ever seen it before. Tom got us great tickets. He went to the theater in person and talked to someone to help find us the best tickets for Harlie during the week Annie was showing. Since we have her chair, I didn't want to have to deal with elevators or getting there and not having a place to put her chair. They were so helpful and put us in a great spot! This is exactly what I was talking about earlier in this post! Going to Annie sounds like fun - but add in the logistical stuff about parking and seating, taking elevators in the parking garage, taking elevators in the venue - ugh! It just really takes energy away from having fun. Tom handles all that logistical crap and when he is driving I don't have to worry about it. So, him not going was a total bummer and changed things for me for sure. 

But, I have to say, parking was surprisingly great! That garage has lots of handicap parking all together on the first level, so we didn't have to take an elevator (what a life changer!). Then we didn't have to take an elevator inside the venue, either. Plus, someone called us over to a different entrance and we walked right in and it was just great. Really, what a pleasant surprise! Harlie said she loved it, so now that I know we can make it work, we'll definitely take her again. I guess you can tell I have some sort of PTSD about elevators. I think it comes from the children's hospitals where we would wait for an elevator and then people would just jump in ahead of us and fill it up and we'd have to wait for the next one. That literally happened so many times. Even when we were going to the ER at VCU. Sometimes people really suck.

On the 20th, Harlie and I went to Caylee's baby shower. She is due in mid-March. I have more I want to share about this particular day that will shed more light into my current struggles. But, I'll go into that in my next post. I know I've said that before, and then went silent for several months. But, I'm really hoping that won't happen this time. 

Harlie, Caylee and me.

Patti, Melanie, Caylee, me and Harlie

Then on the 24th, Harlie got sick. I am so grateful for how well she can handle a sickness now. She is a true champ! She had some upper respiratory thing, but it didn't progress into something worse. However, by the night of the 26th - I was sick, again! Ugh! Can you believe it? I was so miserable on Saturday the 27th. Not only did I feel bad, but I was just feeling so sorry for myself. Tom had plans to go hiking that day. While I wanted him to go because I know it is good for his mental wellness, I also didn't want to be alone with Harlie all day. I also had to go pick up a prescription for her (that's a whole other story that I will tell you about soon). Luckily, Sandy (my sister) called and I told her how miserable I was and that I didn't want to go out of the house. So her and Rick (her husband) went and picked it up for me and brought it to me. 

I'm feeling better, but still pretty tired. I guess I'm just especially run down. So run down that I couldn't go to Cooper's One Act play at school on the 29th. I feel terrible about missing him on stage. But, I just couldn't go. Plus, Harlie had a big appointment the next morning and I had to reserve enough energy for that because if I can't take her then she can't go. At least Tom and Murphy could watch Cooper at his play. Harlie's appointment on the 30th ended up being a pretty bad experience. I'll explain soon. 

Now, today is the 31st. I got her up this morning and gave her a bath. During the bath I could just tell she wasn't feeling well. It is so funny how there are such small, subtle signs that I couldn't even really explain to someone else that tells me she isn't feeling good. She is good about telling me when she doesn't want to go to school. I mean, she always WANTS to go to school. On Monday I asked her and she said, "It's worth a shot!" Haha! So, when I asked her this morning, she said, "I don't know." Okay, well you're staying home then. Maybe she is feeling as run down in life as I am. Honestly, it has been a rough year (from Jan 2023 to Jan 2024, I mean). Well, I suppose it has been a rough year for 2024, too! 

Maybe February will be better. Not holding my breath of course. I am really hoping we can be done with sickness for a while. 

I have a couple of other big(ish) things I want to share, which will also help explain why I'm feeling the way I'm feeling. I'm hoping to focus a post on each one, to make it less overwhelming. Hopefully I'll get to that very soon. Might even be tomorrow if Harlie stays home from school again. For now, I just had to get some things out. I was feeling like I was keeping a dark, scary secret. Which is probably ridiculous as most who know me are probably thinking Duh!

Okay, as always, thanks for reading! And for those of you that I don't know personally, but have commented - I really want to say thank you for all you said! It is amazing to think you are reading this and cheering us on. There are days when I think no one wants to hear my heavy stuff. But then I read one of your comments and I feel like you do want to hear my heavy stuff. Haha! People want to be heard and want to feel like people care - and you did that for me! So, thank you from the bottom of my heart. 

Much love,

Christy xo

We're going to be okay. I think.

Hi, 

Well, my temper tantrum is over. I feel better now. Haha! Thanks for listening, and thank you for all your comments and messages of love and support! I can't tell you how much you help me through the hard times! 

On Wednesday afternoon, October 18 (after I posted my blog) Harlie's speech therapist came by to visit. It was such a fun visit! Harlie and her talked about the class and Harlie's classmates and I feel like I got a better picture of her interactions with them. For example, one of her classmates calls her "little and cute" and Harlie is not a fan. She does not like to be called that. Of course, I was like 😬 because she IS little and cute. Haha! Gotta remember to keep that to myself. Harlie said that one of them is obsessed with her. I looked at her speech therapist and she said, "that's true." 

So, I think Harlie feels liked/loved in school. That clearly looks different than what I would need to feel liked/loved. I'm afraid it will always make me sad that Harlie doesn't have traditional friendships. I need to figure out a way to be okay with how different Harlie's life is compared to what I would like it to be. She's never going to be free from her medical stuff or "healthy" as the general population goes. I mean, how does a parent learn to be okay with her child NOT being healthy - like EVER? Isn't that the first thing you want when expecting a baby? There are a lot of losses when you have a child that can't breathe, eat, speak, etc. without major assistance - or can't do it with all the assistance in the world! 

For so many years we went to all the therapies - trying to get Harlie to a better functional place. Now, at 17 years old, we don't go to any. Whatever she gets, she gets in school. That's it. At some point, we have to come to a place of acceptance, and that is HARD. I had to have a conversation about that with Harlie just the other day about her learning to eat. I think she needs to come to a place of acceptance. But, I can't do that for her. It's hard. Now I'm not just dealing with my grief, or Tom's, we are dealing with hers, too. 

On Thursday afternoon (the 19th), Harlie's teacher dropped off cards that her classmates made for her. Harlie enjoyed reading and looking at those. Harlie is in exceptional education classes, except when she is in her elective class. So, when I refer to her classmates, I'm talking about her exceptional education classmates. So, don't picture her in a typical 10th grade classroom.

Thursday was a beautiful day, so I asked Harlie if she wanted to sit on the back deck for a little while. I got out the cushions, cleaned the deck up, put water in the bird baths and we hung outside. Murphy came home from class and joined us. I loved it. It really is the little things in life that make me happy.

That evening, Caylee and I started to remove her sutures. She has four incisions and we removed the sutures from two of them without any problem. They were the ones in front of her ears. We started to remove the sutures from her right side jaw line, when it looked like the skin was opening up more than we were comfortable with, so we stopped. I had to "chuckle" at me pulling the sutures tight and watching her skin close as Caylee tied a knot. Oh, the things we do that are so not normal parent things. We decided to give them one more day. I was so afraid that her jaw was going to open up and get infected. So, I texted Dr. Strauss (a plastic surgeon here - he took her into the OR way back during her bleeding incident after she got the TMJs put in the first time in April 2021) and asked him if he could take a look at her. He told me to bring her in the next morning. So, I did. He removed the rest of the sutures and said that her incisions look great.  Whew! He actually said that she looked GREAT for being 10 days post-op from that surgery. 

On Saturday night, the 21st, Rooney had a rough night. He just looked like he was in distress. He was walking hunched over with his tail down. I felt so bad for him, so I went to give him one of his favorite treats. He put it in his mouth, then spit it out and went and kind of gagged. Um, that is NOT okay. He's NEVER turned down any food - ever. So, I tried peanut butter. He walked away. WHAT? We really debated taking him to the emergency vet. He did not look good at all. Tom said that at dinner he tried to give him a piece of steak/fat, and Rooney wouldn't eat it. Tom felt so bad for him that he let him sleep with us that night. I was so worried about him! But, we just got back from Boston where we just spent several thousand dollars - we just don't have the money for an emergency vet appointment where we go in not knowing what could be wrong. Plus, he did eat dinner. So, I told myself to calm down and wait and see what he did with breakfast. 

Sunday, the 22nd: He ate breakfast okay. Tom had to put his food on the food mat instead of in the bowl because he was having a hard time getting it out of the bowl. Something seemed wrong with his tongue. Pug-o-ween was that afternoon and Harlie's costume really needed both Pugs. Tom built a barn door for the basket on her chair. The dogs were chickens in a chicken coop and Harlie was a farmer. I felt bad taking Rooney if he wasn't feeling good. He's 11, just in case you were wondering. Since he ate, and didn't seem as bad as the night before, we thought that maybe it would be a good distraction for him to go. So, we took him. It perked him up! He had a great time and was very social. His tail has been well curled ever since. He's back to eating treats and he looks good. I have no idea what came over him that night. But, for now, crisis averted. Thank God. I did NOT want to deal with that right now. 

We met another chicken, haha! 

The surprise of the day was that Rooney won the ice cream eating contest - 2nd year in a row! We couldn't believe it after the crummy night he had the night before! So crazy! He found his spunk surrounded by other Pugs. Haha! We have to figure out a way to get him to the regular Pug meet ups. 

I'm going to stop now and start a new post for the next week, since Harlie had a couple of appointments. 

Much love!

Christy xo