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