Left TMJ Surgery in Boston

Hi! Well, Harlie had her TMJ removal surgery today (Tuesday). To be honest, I'm struggling to get this post started. I'm just feeling so tired of it all. 

Preop Day (Monday)

We flew up on the first flight on Monday. We had to leave the house at 4am. I, of course, woke up at 2:15am thinking of all the stuff I had to do that I didn't want to do. Like go to the airport and fly to Boston. Anyway, the flight was fine. 

We arrived in Boston and took an Uber to our hotel (which isn't really a hotel). It is awesome because they are apartments that are rented for patients of Boston Children's Hospital. It is kinda like a Ronald McDonald house (which they do not have here). They opened after our last stay here, so it is new to us. It is way more affordable than a hotel or AirBnB. So, we went there first to drop off our luggage. Then we ubered to a breakfast place close to our first appointment. After many hurdles, her appointment with the oculoplastic surgeon was approved and coordinated with her other preop appointments. That was a logisitical nightmare. But, luckily, everyone wanted to help us make it work and they got it done. Whew! I'm so thankful for that! Anyway, we had to see this doctor at their Weymouth location (about a 40 minute drive) because that's where she was that day. 

We added this appointment because she saw her ophthalmologist back in November and she felt that her corneal scarring was getting worse. Her scarring probably happened back in 2018 when she was in a medically induced coma for 20+ days. She cannot fully close her left eye, so dust can get in there and while she was out - they were trying to tape her eyes shut. So, if there was something in her eye, it couldn't even come out because of the tape. Anyway, it also is probably dry most of the time, since even blinking doesn't shut her eye all the way. So, her doc just thought maybe it is time to see a surgeon to see if there was anything they could do surgically to help her close her eye more. It seems like so many oculoplastic surgeons work at surgical centers. They aren't going to put Harlie under anesthesia at a surgical center. So, I just thought that since we have to go to Boston twice anyway (phase 1 in May, phase 2 in October) if we had a consultation in May, and they determined that they could help her - maybe we could coordinate eye surgery with phase 2 in October. So, that is why this consultation had to happen or the whole possibility would be lost. 

As far as how that appointment went, the doctor took a bunch of pictures and did a bunch of eye tests and she said she wants to do some research and talk to her colleagues before giving us an answer. I told her that if she felt like they could not improve her situation, that is fine. I am not pushing for this thing unless it truly could help her. So, we'll see what she says.

After that appointment, we ubered back to Boston Children's hospital, main location. At this point it was 1:10pm and we had about 7 minutes to eat lunch. So we grabbed a salad in the hospital cafeteria, ate it really fast and then went up for her preop appointments. 

We covered her history, meds, etc. and they sent in anesthesia. When she came in she said she had some bad news. She said that legal had an issue since she is 18. I guess they concluded that she is not a typical 18 year old so they had an issue with us helping her? I don't really undertsand it. I mean I've gone with Murphy to appointments when he was over 18 and no one said a thing. I took Harlie to her pacemaker appointment two weeks ago and the lady checking us in had to ask someone else if they could still see her. I mean, just ask her if she wants me in there with her. 

Anyway, they basically said that surgery might have to be cancelled. I mean, she has an active infection in her jaw - so this possibility was terrifying to us. Not to mention the cost and time we had invested. Anyway, after they left to go and get social work and talk amongst the legal team - it occurred to me that we did her power of attorney and medical directive a few months ago at the firm where I work part-time. I completely forgot about that! Anyway, I called my sister and asked her to look in my computer at work to see if I scanned in the signed copies. Which, I did not. Darn it. So, then we called my neighbor to see if she was working from home, which she was, thank God. So, she dropped everything and went to our house and she found the documents in our office. Then she scanned them to us. Hallelujah! Thank you, Lindsay! Tom emailed them to the nurse and we waited. 

It is during situations like this where my brain goes crazy (PTSD?) and it is awful. Not to mention that I feel like I am being lit on fire when it appears that some stranger is standing in the way of Harlie getting the medical care she needs. OMG. So, I started to think of every horrible thing that could happen. Like, for example, YEARS ago while we were in the hospital here, there was a case happening where Boston Children's Hospital took parental rights away from the parents of a patient. They brought her here from out of state for a chronic issue because they couldn't figure out what was happening. I guess they feared that the parents were part of the problem. I have no idea how that ended. Anyway, that entered my mind, as if that was a possiblity! I was afraid that they wouldn't honor the document. I don't even know if that is possible. But, I was truly terrified they would question it and say it didn't matter. 

We are working on her guardianship, but trust me when I say this has not been easy. In fact, we just got her psychological evaluation report that very day! I think that is the last piece of information we need to file it legally. 

Anyway, I was trying to stay calm and tell myself that it will be okay if they cancel it. I said to myself, I didn't want to do this to her anyway, so we will just leave and go home and hope that her infection doesn't hurt her before we can get this guardianship and come back. Or maybe even go somewhere else. I'm telling you - I looked totally calm, but inside I was spinning out of control!

Then the social worker came in and said legal said her medical directive was what they needed and all is a go. I literally had to hold back the tears. I was so relieved.  The documents are now saved in my phone, which is where they should have been. Ugh. My brain just doesn't work like it used to. I'm just getting too old and tired for this kind of stress. We are 18+ years into fighting for her life and I am running on empty. 

After that she had to give some blood for labs, the anesthesiologist came back and we did our thing (more history, questions, meds, etc.) and then we were DONE. 

We left the hospital close to 5pm, I think. Been up since 2:15am. So, we walked the mile or so towards our apartment and stopped at REI (Harlie calls it the camping store) to let her look around. Then Tom and I got a drink and we sat outside for some fresh air and relaxation. 

Tom ordered me the Murphy's Law, which was an Irish Whiskey with cucumber and mint. Since Murphy turned 21 on the 11th (the day before) that seemed like a good choice. 🙂

We went to Target (which is right across the street from our apartment) and got some essentials (coffee), went and got dinner from a greek place and then ate in the apartment. It is a cute, tiny one bedroom apartment. Perfectly fine for our needs and priced great at $75 per night. 

We were all so exhausted and we had to get up at 4:30am! We had to have her at the hospital at 6am and we had to walk there.

Surgery Day (Tuesday)

They took us back to preop quickly. They had told us that they wanted to start an IV in preop. Harlie hates that. So, we talked about it beforehand so she wouldn't be blindsided. She likes to be informed in advance of all things. Haha! I told her I would only let them try once or twice. If they couldn't get it in one or two sticks - they would have to stop, so she agreed to that. They didn't get it in one stick and the nurse said she wouldn't even try a second time. Harlie was glad about that. 

I am so used to answering all the questions for Harlie. But I made an effort to ask her if she wanted to answer or if she wanted me to answer. She wanted me to answer all the medical stuff. She answered all the personal stuff.

All the docs came in to ask all their questions and ask us if we had any questions. We never have any questions. It always cracks me up when the anesthesiologist asks me if I have any questions. Like what would I possibly ask her? You know what you're doing? Great. Go do it well. 

They took her back around 7:30am. We went and got some breakfast and then headed to the waiting room to wait. This is what I posted on Facebook:

Tom made this little image of me and added it in the comments.

It so perfectly depicts how I'm feeling right now! Haha! Love it. I feel seen! Haha!

Anyway, while we waited, Tom put the movie Nonnas on his tablet for us to watch. It has Vince Vaughn in it, it is on Netflix. The movie starts with a funeral. 😑 

Folks, I'm hanging on by a thread over here. So, the slightest thing that could be interpreted as sad, and there was no chance I could hold the tears back. I basically sat there and cried for the first 15 minutes. In fact, I told Tom to just turn it off. But, he said, "I think it gets better." Haha! He went and got me some tissues, actually it was a bunch of toilet paper because he said he couldn't find any tissues. What the actual heck? A children's hospital (affliated with Harvard medical, which has to have plenty of money) waiting room with not one freaking box of cheap ass tissues? Unbelievable. So, I sat there with my wad of toilet paper crying over some stupid movie that wasn't even sad!! I'm telling you, my life is way harder than I make it look. 

Luckily, I was done crying by the time her surgeon came to talk to us. He said there were no surprises and all went as planned. He said the infection was there, but wasn't horrible. Either way, we had no choice but to do this - we were never going to beat that infection. He asked us for permission to test Harlie's blood. One of the plastic surgery fellows poked himself with a needle during her surgery. I asked him if they made fun of him and he said yes. Haha.

They admitted her to the CICU and when they got her all settled, we were able to go see her. One example of why hospitalizations are so exhausting is the repetition of information - we asked her surgeon what after care she should have. He said ice is the best thing we can do to help reduce the swelling. I asked him if he put that in the orders so the nurses in the CICU would know to do it, since the CICU doesn't normally get plastic surgery patients. He said yes, they are in there. So, we get to her room and there's no ice. So, I ask the nurse about the ice and she said there were no notes about ice. I don't know why that happens - but it does. You always have to be on top of everything. You can't assume anyone knows anything. It really gets exhausting. Anyway, she got her ice and a sleeve thing. She slept pretty good and her nurse said she only had her so she would be right with her - so we should go eat lunch. 

We left the hospital and walked to a restaurant a few blocks away. It was a beautiful day.  Harlie woke up when we got back. Oh, forgot to mention that her surgeon also re-pierced her left ear while he was in there. I don't know if you'll remember that when we went to see Taylor Swift a couple of years ago, Harlie's left ear lobe split. So weird. During her surgery to replace the right TMJ back in 2023, he repaired that ear lobe. So, since he was in there, Harlie wanted him to pierce it again. 

We stayed in her room until her night nurse came on. She said she only had Harlie for the night and would be right with her. Harlie was pretty tired and slept most of the time. So, we left and headed to the hotel. After putting our stuff down, we went up to the top floor of the building to check out the view. There's a little patio up there for the residents, which is pretty cool. That's Fenway behind us. 

Then we walked to a restaurant just a few doors down for dinner. Tom's mom got us an e-card for dinner there, so that was really nice. Thanks, Mary Ann!

Post-Op Day 1

Harlie's nurse said she slept all night, which is good. When we got to her room, we got her all cleaned up - I brushed her hair and braided it, changed her trach ties, got her ear all cleaned up (her incision had drained all over her freshly pierced ear) put her in fresh pjs and changed her bedding. 

She was a little upset and frustrated at her life and cried a little. Ugh, she breaks my heart. She told me that she gave her phone number to a girl in her class. I was very surprised. She checked her phone to see if her friend had messaged her and she had not. I have no idea of what her friend is capable of doing or if she even knows that Harlie had surgery. I can't imagine having a surgery like this and not hearing from my friends. It just breaks my heart that Harlie doesn't have that kind of friendship. She must feel so lonely sometimes. 

Her nurse said that if she could get a CT scan today, they would discharge her if we were ready for that. We felt like she was doing really well. Then her nurse said that CT called and said they were ready for her. Wow. So, Tom looked at flights and the next flight out is for 9pm tonight. They rounded on her right after she returned from the CT scan and told Tom to book our flights. I loved the attending doc. They ordered her meds and gave me everything I would need for the trip home. This is definitely the shortest post-op stay she's ever had. We loaded up and left. For the first time ever (been coming here since 2012, I think) we used the free shuttle from the hospital to our apartment/room. I just didn't want her to have to sit in her chair and be bounced around. Seemed like that would be painful.  

We are now in our apartment/room and Harlie is napping and we are pretty much packed and ready to go. 

Hopefully, all will go well with the airport and flight and we'll be sleeping in our beds by midnight. Thank you for reading and commenting and loving us. 

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

Post-Op Day 1 (TMJ Replacement)

Hi. Well, as I said yesterday, we finally got in to see Harlie at 7:35pm in the CICU. She was miserable. No matter how many times we have been through this, it never gets easier. In fact, I would argue that it actually gets more difficult. I've said before, that every time we come back to the hospital, I'm bringing all the other stays with me. 

If you know Harlie personally, then you know that she is not an affectionate person. She is definitely NOT a hugger. But, post-op, she wanted to hug. She was complaining of a lot of pain. So, her nurse gave her Dilaudid and that seemed to calm her down. By this time, it was well after 8pm and Tom and I had not eaten dinner. 

While we were waiting to see her (very irritated) Tom and I were talking about how hard this is on parents. 

1. We traveled here - so we are starting off a hospital stay tired from the stress of traveling for medical care. I haven't even been able to tell you that last week we had to say goodbye to Tom's step dad, my father in law, and the children's grandfather (PapPap), Cal Bowser. He was a great man and we will all miss him very much. We went to his service in PA on Thursday and Friday. While we loved being able to see Tom's mom and sisters and family (and meet a lot of their friends), it was definitely a very sad, emotional few days. We drove home on Saturday. On Sunday we unpacked, did laundry and then re-packed for our early flight Monday. 

2. You can't eat when you get hungry. All meals are eaten when time allows you to do so. On surgery day, they took her back around 10:30am, almost two hours later than expected. By that time, the cafeteria is closed for breakfast and preparing for lunch. So, we found a snack in a fast food kinda place downstairs. This is where we sat for two hours (through dinner time) waiting to go in to see her.

3. You spend all day sitting in rooms with other people in chairs that aren't comfortable. Or in our case, walking around. If you know Tom personally, then you know that sitting around waiting isn't a skill of his. I convinced him to walk to the local Athleta store (3 miles away) since I had some credit there. I bought a pair of pants that are comfortable, but look nicer than tights. I'm choosing to be excited about my new find. Haha! We were pretty tired and didn't want to risk having to take too long to walk back and miss the surgeon. So, we took an Uber back. 

4. Worrying - being concerned about your child's well being takes a lot of energy. 

Add all of those things up together and you can't help but be exhausted, hungry and grouchy. All of this happens BEFORE the recovery even starts! 

Walking into the hospital this morning, I just felt sick. Doing all of this again, over and over (without ideal results) is like the worst groundhog day ever. I said to Tom, "I don't want to do this to her again. I'm done with jaw surgeries". Tom said, "Well, in our defense, we didn't want to do this one." Truth. Haha! 

She is okay today - she is definitely hurting. 

They are giving her Dexa something, an anti swelling medication. I don't remember them giving that to her last time. I'm hoping that is the ticket to way less swelling than she's had in the past. 

The anesthesiologist who had her yesterday came by to check on her. He told us that she signed something when she woke up in the OR. None of them knew sign, so they got out their phones and started googling. They learned that she was signing "hurt". So, they gave her more pain medicine. I love when she can communicate her needs and I love it when people try to understand her, even when it takes more effort. He also said that they were able to understand that she asked if the doctor fixed her left ear lobe. They told her yes. Cute. Its the little things. Of course after it heals, we will have to pierce that lobe again.  

She got moved to the step down unit today. This step down unit is pretty impressive so far. They are being really good about managing her pain. I was so tired today that Tom made me take a nap. I fought it for a second, but when he put the couch into a bed, went and got me a pillow and sheets, I had no choice. Haha! 

While the nap was good and very much needed - it is not the solution to my kind of tired. I am struggling this time around. I hate to say it (because I am so afraid I will be punished by some greater power) but I am so tired of being inside a hospital. I am tired of having the same conversations with doctors and nurses. I'm tired of watching Harlie go through too much crap. When she is miserable, I am miserable. When she hurts, I hurt. She breaks my heart. She's already asked me when she can eat. What she means is when can she chew up food and eat it like most people do. Somehow she thinks this surgery was to advance her abilities. But, it wasn't that kind of surgery. The reality is that I don't think she will ever be able to chew food up and eat it. Her teeth don't come together like that. I wish that wasn't a goal of hers. I wish that she would come to the conclusion that she can have a fine, happy, good life without eating food like most people do. It breaks my heart, and that makes me so incredibly tired. 

I spoke with the infectious disease doctor today. She is adding a short term antibiotic to be on the safe side. We are going to leave her on the doxy for another 4-6 weeks, also to be on the safe side. She said that this infection is so rare that there is no protocol for it - we are just making it up. She said she found a few articles. Isn't that crazy? I don't even know what it's called. A shitty deal, that's what it should be called. Anyway, I pray that this infection is gone for good. 

Well, I'm signing off for today. It is 8:30pm and we still have to walk back to the hotel. 

Thanks for all the love. 

Christy xo

Right TMJ Replacement Surgery

Wow. I'm so sorry, I never updated the blog during/after her last surgery. I have worked on some posts, but haven't hit the publish button. 

Well, for now here's the summary:

In March 2023 she had her right TMJ removed (infection) and he put in a temporary spacer. Her recovery was okay. Certainly not as bad as the original placement of both TMJs in April 2021. Which is great, because that was a nightmare. Anyway, if my memory is correct, Tom had a big job starting a day or two after her surgery, so he had to fly home. We were planning on him returning after he got the job going to help us get home. But, that didn't work out. I think it was going to be way more costly for us to wait for him to fly up (another night in the air b&b) and then have all three of us fly back home. So, I said I was just going to have to be a big girl and get her home by myself. 

Well, I'm not going to do that again. That was awful. I just don't have enough hands to push her in her wheelchair and pull her oxygen concentrator and luggage - impossible! I remember getting out of the Uber and having to unload everything (including putting her wheelchair back together) and then I would take the luggage a ways, then leave it, go back for Harlie, then take the luggage further, go back for Harlie, etc. Some nice ladies helped me after they watched me for a sec, so I was grateful for them. But, even after checking the luggage, I had Harlie and the oxygen concentrator. By far, the worst leg of the trip was getting OFF the plane. The ramp that you walk up from the plane to the gate is steep and has bumps from one ramp to another. I couldn't get Harlie up the bump with one hand (and pull the concentrator with the other). I REALLY struggled and finally one of the employees came to help me. He pushed Harlie up and I got the concentrator. Sounds nice, right? No, the worst part is that he looked completely annoyed at having to help me. It was the WORST. 

Anyway, we learned - not going to do that again. 

Okay, back to current events... We flew up early Monday morning. We had to wake up at 3:20am to get us ready and to the airport by 5am. Even with us having TSA, going through security with her takes forever. We got to Boston with plenty of time before her first appointment at 10:30am. So, we took our luggage to the hotel and put it away for the day. Then we went to get breakfast. Then headed to the hospital.

She had several pre-op appointments...

I haven't been able to update you on what's going on with her pacemaker - but back in August it was confirmed that one of her pacemaker leads is going bad. The leads went in during her very first heart surgery at just four days old. So, those leads are 17 years old now! I'll have to save those details for another post. Just know that this is an issue (which will require open chest surgery at some point in the future) and another thing they just wanted to be on top of. 

We went and got dinner and then watched Narnia with Harlie. 

We had to be at the hospital at 7:15am for an 8:45am surgery time. 

I feel like I look so tired in this photo. It is because I am. Haha!

I forgot to mention that back in the summer, her earring in her left ear worked its way out of her tiny little lobe. So weird. No trauma, no big earrings, we have no idea. So, I sent her surgeon a picture of it and he said he could fix while he was in there. 

All that went fine except they were delayed because they were trying to find her an ICU bed to go to post op. They wouldn't give the green light to start until that was confirmed. During the wait, I reminded her that she's going to hurt for a few days again. She said, "I know." Then I told her that in time, she will feel as good as she does right now. She said, "I know." She's so good, y'all. She's so good waiting for surgery. She never complains about being hungry - or about anything at all. It really struck me how good she is (and has been her whole life) while we had to listen to the parent next to us talk on speaker phone (ugh) and her child yelled and screamed that she was hungry and wanted to go home. Now, don't get me wrong - I kinda felt bad for her. No kid wants to go through surgery. But, it just reminded me that we have NEVER had to deal with Harlie like that. Even when she was a baby, or a toddler. It is like she just knew she had to deal with it. 

Anyway, they finally took her back at 10:30am. They said they anticipated a four-hour surgery. We went downstairs and got some food. Tom's messenger bag was breaking, so we went to REI to get him something that would make it through this stay. It was funny, he bought that bag during her first surgery in Boston in 2012. Ahhh, the memories. We had NO idea we would STILL be working on getting her a better airway 11 years later. Anyway, sitting around a waiting room all day has gotten so painful. We've just done it too many times. So, we spent most of the day outside, walking around. We got phone calls every 90 minutes to let us know what was going on. 

Dr. Resnick came to get us around 4pm. He said overall things went well. He replaced the temporary spacer with her new titanium TMJ. He said sometimes when one side doesn't have as much support as the other, it can dislocate the "good" side. Which is what happened. He thought that would be an easy/fairly quick adjustment/fix. But, as everything goes with Harlie - it turned out to be more complicated. He said the dislocation had clearly happened months ago and that soft tissue had grown all around the joint. So, he ended up having to make two incisions on her left side and had to manipulate that side way more than he thought. That means she will definitely have some pain and bruising on that side, too. But, he was able to wash the left TMJ and fix it, so that's good. In total she has four incisions, two on each side. 

He said anytime you're working around/in the mouth - it is very hard, if not impossible to keep things sterile. But, he didn't have to work in her mouth this time. So, hopefully, she will be okay as far as infection goes. We will keep her on her antibiotic for another 4-6 weeks, just to be on the safe side. She's been on this antibiotic since August of 2021, so we will be happy to be done with that medication! 

Anyway, Dr. Resnick said that unfortunately, they still didn't have an ICU bed for her! So, she was hanging in the OR until they could find her one. It is now 6:15pm, and I don't think she has an ICU bed yet. She is supposed to go to the cardiac ICU (CICU) but we checked in with them and they said she hasn't come up yet. Crazy! 

I think when I blog and share stuff with you, I really try to focus on the positive. It is better for me to do that for my own good, too. However, there is always bad stuff. We definitely worry about her. I mean, worry about something going wrong. She's had well over 100 surgeries now and so many of them have been really big ones. She's getting older and her body has been through so much. We can't help but fear something catastrophic happening. Especially when we've had several of those experiences now. 

So, at 4pm we were told that she was just hanging out in the OR, waiting for a bed. Then, I don't know, an hour or so later we were told that she had a bed in CICU and that we should go get our badges, then go up to the CICU waiting area. When we got here (just after 5pm) the CICU said they didn't have her as a patient yet - so she hasn't come up. Now it is 6:30 and she's still not up?!  What the hell? I'm telling you, this is like a roller coaster from hell. We worry, we're told all is okay, now we're worrying again. The worrying about her well being is EXHAUSTING. Add that on to our physical tiredness and I don't know how we live like this! 

Okay, I just went and asked again. She told me that she JUST got up to the CICU and they are getting her settled now. Whew! They will call us when we can go see her. Geez. This life...

I think I'll sign off for today. I'll write again tomorrow. 

Thank you for all the love, thoughts and prayers! We appreciate you all more than you know!

Much love,

Christy xo

Post-Op Day 2, TMJ Reconstruction

Hi!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

   You can see more blue coming in...

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

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

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

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

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

Much love,

Christy xo

Pre-Ops in Boston

Hi All,

I have been working on this post since our pre-op days in Boston a couple of weeks ago.  But, to be honest, this one is going to be a really hard one, so writing about it hasn't been easy.  I found the four days of pre-ops particularly exhausting, both mentally and physically.  Somehow, we managed to still laugh and have a little fun.  But, I can tell how my spirit was by the lack of photos. 

Anyway, if you're interested in the nitty gritty of what's about to go down, here it is in all it's glory.  Proceed at your own risk.

Here was our schedule:

Monday:  9am flight to Boston, Cardiology at 2:30 (EKG, Pacemaker check)
Tuesday:  Echocardiogram at 11am, then Dr. Lee (ENT) at 1pm
Wednesday: Off - New England Aquarium
Thursday: Dr. Resnick (plastic surgeon) at 10:30am, Pre-Op at 12:30, 9pm flight back to Richmond

Today is Wednesday, February 12 and it is our day off from appointments, which we are enjoying.  We (Caylee, me and Harlie) flew up Monday morning, February 10.

We had five rolling cases (one suitcase with clothes, etc. for each of us, one large suitcase for all of Harlie's medical equipment, formula, etc., and her portable oxygen concentrator), Caylee has a backpack, I had my bag, and Harlie had her suction machine bag.  It was a lot of hard work for two adults rolling her wheelchair AND five rolling cases.  We had Harlie hold on to her little suitcase (red one), Caylee pushed Harlie with one hand, pulled her suitcase (purple) with her other hand, and I put two matching large suitcases (green and blue) together and rolled them with one hand and rolled the portable oxygen concentrator (black) in the other.  The most challenging part of rolling all these cases was getting in/out of elevators (which you have to do a lot when you have a child in a wheelchair).  Most of the time the wheels would get stuck in the crack in the floor and the doors would start to close while we were still trying to get everything in/out - and this was while people were looking at us like we were CRAZY.   

It was exhausting. And I could never have done this alone.

Once in Boston, we ordered an UberXL, and it was still a game of tetris to fit her wheelchair in with all of our stuff - plus us.  Haha!  We ubered to the hospital because it was too early to check in to our AirB&B.  We checked our luggage in at the hospital (this is something a hospital offers when they know so many patients travel from far away) and went to find a place to sit in the cafeteria.  Our appointment was at 2:30, but we got to the hospital at 11am.

The cafeteria seating area is quite small for such a large hospital.  And even though it wasn't quite lunch time, every table was full.  There were several tables where only one person was sitting down, on their phone, with no food.  I am not normally like this, but I was exhausted and went up to an employee of the hospital who was taking up a table while on his phone.  I asked him if he would mind letting us have the table.  He left.  I didn't even feel bad, that is how tired I was. After a few minutes, Tom called to tell me that the Air B&B contacted him to let him know that we could check in if we wanted.  So, we went back and got our luggage and got another UberXL (this one wasn't big enough) and we SQUEEZED ourselves in.  Ugh.  So tiring.  We unloaded at the apartment and had to carry all the stuff (including her wheelchair) down one flight of stairs.  OMG.  I cannot tell you how tiring all of this moving around was.

The apartment is awesome and perfect for our stay (except the flight of stairs which is a real pain with the wheelchair).  No, there is no elevator.  The owner of the AirB&B contacted Tom last week and told him that the people who were in this unit wanted to stay longer and asked if we would be willing to take a unit on the 3rd floor instead.  While we wanted to help out (we could very well be in that same situation next month) there is NO way I could have handled carrying all this stuff up/down three flights of stairs.  No way.  So, I guess those people had to move upstairs.  I feel bad, but... just no.

It rained all day Monday and Tuesday.  It is less than a mile's walk to the hospital from our apartment.  We decided to walk anyway.  I brought an umbrella and Harlie held it over herself.

The cardiology appointment on Monday went okay.  She had an EKG, and a pacemaker check. While waiting I fell asleep in the chair!  I told Caylee I would pay her a million dollars if she went downstairs and got us coffee.  She did it for free.  While sitting there, feeling so tired, I thought I just don't know how I'm going to do this again.  I don't know how I'm going to do another stressful, difficult, hospital stay.  My God, how many more are in our future?  I am only human - Harlie is only human - how much more can we do? And the last two surgeries resulted in three months in the hospital.  Having those two recoveries as my most recent experiences and memories are proving very challenging for me.  If you see me out and about and think, "Oh, she's totally fine" I'm sorry to say that you are wrong.  I'm working really hard to keep my shit to myself.  So, what you're seeing is a fuck ton of effort paying off.  You're welcome. 

Anyway, they scheduled an echocardiogram for Tuesday.  We left close to 5pm, I think.  We walked to Trader Joe's and I forgot how freaking insanely busy that place is!  We bought a few things like coffee creamer, eggs, and wine.  Lots of wine.  Then we hit CVS and then walked back to the apartment.  My arms felt like they were going to fall off.  Wine is heavy and we were walking. It was an exhausting day.  Not sure if I mentioned how tiring it was.  Haha.

We went back to cardiology Tuesday, and got her echo done.  Echos used to be so difficult for her.  She would cry and fuss, which I never fully understood because it was like the least painful thing she had ever done.  But, I am happy to say that phase is behind us and she was perfectly cooperative and the tech spoke directly to her and she did what he asked.  Hallelujah!

After that, we headed across the street to meet the ENT, Dr. Lee.  Last month, Harlie had a DLB (direct laryngoscopy and bronchoscopy - aka - scope of her airway) in DC with her ENT, Dr. Preciado.  He told me that Dr. Lee had already contacted him about Harlie.  I was impressed.  Although, the fact that docs are discussing my kiddo two months before a surgery because she is so complicated is not lost on me.

Dr. Lee spent a long time with us.  We went over her history and what our concerns were for next month.  Hard to believe it is is only a little over 3 weeks away!  He said that if this jaw distraction doesn't get her tongue base out of her airway enough, he could do surgery on her tongue and remove part of the base. 

For real. 

It is called a glossectomy.  I'm just going to hope it doesn't come to that.

He put a camera down through her nose to look at her upper airway.  This was hard on Harlie, but she was a champ and tried so hard not to fight it.  I know it wasn't comfortable, but she managed. We saw her epiglottis.  Hers stands up (because her tongue base is too far back towards her throat), but it is supposed to lay down. 

At one point he asked when her surgery was.  I answered March 6.  He looked at his calendar on his phone and said, "I'm in Waltham that day. Can you do it March 5?"  I was like, what?  I explained that getting Dr. Resnick and Dr. Padwa available on the same day was a challenge and we scheduled this back in the summer. Oh my gosh, don't tell me you have to be there, too.  I didn't say that last sentence out loud, of course.  I mean, if it is best for Harlie, then... but please dear God tell me that's not the case.  Thankfully, he thought it over and said it was way more important for him to see her during her recovery and before she gets discharged.  He said when they remove the hardware a few months down the road, he would like to do a scope at the same time so he can see what her airway looks like.  Sounds like a good plan to me. Whew!

He agreed that we should know pretty quickly whether this distraction surgery is successful.  When they remove the hardware, theoretically, she should be able to breathe around the trach.  So, we'll see... that's several months away from now.

 After that was over, we headed back to the apartment to relax until dinner.

Today (Wednesday) we are headed to the New England Aquarium.  Harlie has already looked up the Boston Children's Museum on her tablet (I don't know how she did that) and has said she really wants to go there.  Unfortunately, I just can't let her go where a lot of kids go and have touched everything.  I just can't risk it.  I told her we didn't have time.  I thought she would fuss, but she just said, "Okay, maybe next time we are in Boston?"  Sometimes, her NOT fussing is worse.  So, I said, "Yes, maybe when we come back for surgery we can go the day before." But I'm not sure I can let her do it then either.  Ugh.

Thursday, February 13

So, yesterday we went to the aquarium.  It was fun.  She loves that place.  And they are so nice - they let people with wheelchairs pay inside vs. standing in line outside.  And they let her in for free. I sent a text to a friend of mine that gets my humor and said, "They let her in free because she's in a wheelchair. Its finally paying off!" I crack myself up.

Anyway, look how happy Harlie is to go there.

She took photos with her tablet of everything so she could look at them later.  She is so funny.

The aquarium was perfect - it was cold and rainy out and there was practically no one there.  She got up from her chair a few times and walked around. 

This next picture was at the top of the big tank that runs down the center of the building (down 3 flights, I think).  If you look, you can see her waving at me from the other side of the tank. 

There was something about the gusto in her wave that got me.  Like she was all in - not holding anything back. That is how she is - no shame, no apologies.  She lives life the way she wants, she likes what she likes and she doesn't care how other people view her.  And she lives in the moment - forget about the hospital - I'm in the aquarium right now!

I wish I could be more like her.

Just because I loved this guy and he was posing for me...

Today (Thursday) we meet with one of her plastic surgeons, Dr. Resnick.  Then we go and do the hospital pre-op stuff.  Then we should be done.  Unfortunately, we have to check out of this apartment and take all of our luggage with us to the hospital.  We will store it there for the day until we are ready to go to the airport.

It is now 4pm and we are finally done with all the pre-op stuff and we are already at the airport.  I asked if we could get on the earlier flight (6pm) because waiting here till 9pm sounds like it could kill me.  I couldn't believe our luck!  There were three seats TOGETHER in row 2 on the 6pm flight.  YAY!!  We were so happy. 

So, about that jaw distraction surgery...

Our appointment with Dr. Resnick went well.  He showed us the surgical plan.  Back in the summer, it was more like a brainstorming session since they had just seen the CT scans right before our appointment.  They have had a few months now to put together an actual plan.  He said that the 3D printed model of her jaw, etc. is in production.  They ordered custom pieces to be placed in/around her jaw and skull.  Once everything is in, he will make sure it all fits on the model first so they can work out some kinks before putting them on Harlie.  Fascinating stuff, really.  Probably more fascinating when it is someone else's kid.  Haha.  But, I am appreciating all the new stuff they can do to help give her the best chance at a successful outcome.

For those interested, basically, here is the overall plan:

The picture on the left is her jaw now.  The picture on the right is what they hope to achieve.  They want to move her jaw forward, down and up. He described it as "turning a corner."

The bone highlighted in blue/green is her fibula bone they put in her jaw back in 2012.  He said it is a thin bone and we are asking a lot of it with this surgery.  I think he said a potential risk is that the bone could react by shrinking a little.  I'm not sure I totally understand this. But, regardless, we can only hope that it can do what we need it to. 

They will install some hardware, some will be under the skin, and some will be outside the skin.  Here is a picture of the cutting guides and her jaw.  The holes on the cutting guides are there to give the surgeons several options of where to screw it into her jaw.  The cutting guides are there for them to cut her jaw on each side.

Here is the metal that they will attach after cutting her jaw.  The holes give the surgeons options for attaching them to her jaw.  He said he will cut away the unused metal. Then, the device will have some kind of screw thing that will come out in two places on each side (see arrows). One will move the jaw forward and one will move it down. 

I think he said that in her last jaw distraction surgery (done in 2013) they used a device that attempted to move in both directions at the same time.  They don't think that will work for her now (maybe no one else, either, I don't remember).  So they have one area that moves the jaw down and one that moves it forward. 

We will attach a tool to the metal sticking out and with each turn of the screw, we will pull apart the bone where it was cut.  The bone will grow to heal, and each day we will basically re-break it and force new bone to grow each day, adding length to her jaw.  I think our goal is like 12mm. 

The chicken foot device is there to force the growth of her jaw in a forward direction only.  We do not want the bone to be allowed to move backwards.  So, this device keeps her bone stable. The chicken foot part will go into her skull somewhere above her ears, and metal will come down into the other set of metal.  The rods you see attaching the chicken foot parts to the metal in her jaw will be on the outside of her face. 

There will be two places where we have to turn the screws on each side (so four places total).  He said he is expecting that we will have to turn the screws for two weeks.  Then, we just let everything heal, while all the hardware stays in place.

Then, if all is going well, we will return to Boston eight weeks after surgery for them to remove all the hardware.

There is one thing we all have to think over and decide before surgery.  Dr. Resnick said that the chicken foot device has a built in moving point, which allows her to move her mouth (open and close it).  Unfortunately, this movement negatively impacts the end result, if you will.  Allowing the movement might not get us as much growth as we would like.  So, we might have the option to prevent the movement, and if we do that, we might be able to have a better end result.  This would mean she would have very limited movement (or none) of her mouth for eight weeks.

She has had her jaw wired shut before - twice.  And she lived for months (probably a year) with her jaw fused in one position.  She has a secure airway with the trach and she is g-tube fed.  So, I'm thinking she will be able to handle limited mobility of her jaw for eight weeks.  I just hate the thought of putting her through all of this and not getting the BEST possible outcome we can get.  So, we are all going to think it over (her docs and Tom and I) and make a decision before surgery.

So, after the hardware is removed, he would like to get another CT scan about five to six months after surgery (around August).  They will use the CT scan to create custom joints for her jaw.  It takes about four to six months to fabricate them.  So, basically we are looking at doing some sort of joint replacement surgery in about a year.  They can't do it at the same time because her skin is too tight.  They need to stretch her skin gradually, so it doesn't fight the movement forward.  Crazy stuff.

After that appointment, we headed to do the hospital pre-op stuff (admissions, anesthesia, etc.)  I had to answer a bazillion questions (again) and then we were done.  We walked to the Squealing Pig for a late lunch.  Then we walked back to the hospital to get our luggage and head to the airport. 

All in all, I am not looking forward to the next few months.  We are in the "going up the first hill of the roller coaster" phase, one slow, agonizing click at a time.  I really feel like this is the worst part.  Once surgery happens, then I'm dealing with whatever happens, as it happens.  Surgery is 11 days away now, and we have to do everything we can to keep her healthy.

Oh, I forgot to mention that in the lobby of Boston Children's Hospital, they had a beam they are going to use in a new building of the hospital.  They were asking kids to sign it.  Pretty cute.

Oh, another thing, while we were in Boston, every night after dinner, Caylee and I watched an episode of The Pharmicist on Netflix.   There are four episodes.  It is really good.  I highly recommend it.

Well, that's it for this post.  As always, thanks for reading and for caring.  I appreciate it more than you know.

Much love,
Christy xo