Home and life moves on...

Hi. Well, we made it home on Saturday, May 9th (my Mom's birthday). It was a long day. We took an Uber to the airport. When we landed at Reagan, we had to take the shuttle to the rental car place. Then we had to wait there for a while. Then we finally got the car and drove home. I think we got home around 7:30pm. I think it, I say it - every time - but I cannot imagine how hard all that travel is on her after all she's been through. 

The next day was Mother's Day. It was a beautiful day. But, we were just too tired to enjoy it. We did sit outside for a while, which was nice. Harlie didn't come downstairs at all. So, as far as doing something "special" well, that was just out of the question. We needed to catch our breath. To be honest, it was a difficult day. Not only did we just get through a grueling week, with another grueling week of recovery ahead, it was my first Mother's Day without my Mom. It was weird. With all my feelings, I just didn't have it in me to do much wishing other moms a Happy Mother's Day. I stayed off my phone and just rested as much as I could. We had dinner with the boys, Tom made crab cakes, which I requested. The boys gave me nice cards and wonderful gifts. They are so thoughtful and sweet. 

Monday was Murphy's 22nd birthday. He didn't have to work at all, which was nice because that meant I got to spend almost the entire day with him. He asked me to help him work on going through stuff in his room and packing. I also wanted to get him new bedding, so we went to Target and he picked out all new stuff for his bed. He tells me he is going to make his bed every day when he gets into his apartment. Haha! We'll see. We gave him stuff for his apartment, like a set of pots and pans and a cast iron pan that he wanted. He bought a kitchen island off Facebook marketplace and Tom fixed it all up for him and painted it. He's in pretty good shape, really.

Harlie's Electrophysiologist (EP/pacemaker doc) moved us to 9am on Tuesday in Fredricksburg so we could get out of there in time to go to Murphy's graduation. 

As far as how it went... it went as most EP appointments go - they essentially say the same thing - the leads are tricky, but they still work. She's stable for now. Honestly, they do an awful lot of fiddling around with her device for me to believe that she's "stable". From my perspective, it seems like they are putting in a lot of effort to turn around and say she's stable. The EP put a Holter Monitor on her for the next 24-48 hours so they can see if they can get more data. She said that she really can't tell me if she'll need a replacement in the next six months or in the next two years. They just have to watch her closely. It's kind of frustrating. No, I don't want to rush into any surgery - especially right now. But, at the same time, I don't want us to end up forced into a surgery with no time to prepare. Or worse - have a catastrophic failure that ends horribly. Or, everything will be fine for the next two years. Seriously? How are parents supposed to live like this?!?!?

I told her that Harlie has camp in Indiana next month. Are we risking too much by sending her? I don't want to live in fear and have her miss out on valuable experiences (this is the last year she can go to camp since she will be 20 in September). But, I also don't want to be negligent and dangerous. We have an anniversary trip to Spain planned for the end of August/beginning of September. Should we not go? What if we go and something happens? She said she wants us seen by EP again on June 4th (her EP doc comes to Richmond on the first Thursday of every month). We'll have that conversation then. Hopefully they will have the results of the Holter monitor by then. As far as our anniversary trip, she said don't cancel anything yet. 

I just hate living like this. When I started to tell her doctor about camp and our trip, I started to cry. I HATE it when I do that. Amazingly, there's only been a handful of appointments when I've cried. On one hand, I feel weak/out of control when I do that. But if you think about how many more appointments when I HAVEN'T cried - I'm like, hey, look at you! Haha! 

The bottom line is that life is kicking our asses right now. Normally I can keep myself somewhat contained. But, I just don't have the energy required to keep all my feelings contained, so my feelings are spilling out all over the place. This makes me want to go home and not leave and not see anyone. 

Anyway, we left there and headed back to Richmond. It was a quick turnaround since Murphy had to be down at the Siegel Center by 1:15pm. Caylee came over to hang with Harlie while we were gone. Of course, Harlie wasn't feeling up to going. She missed Murphy's high school graduation because she was in the hospital. Now she missed this one. Ugh. 

There were about 800 students participating in the graduation ceremony. I assumed the students were in alphabetical order, so when the students first entered and filed into their seats, I wasn't really looking for him. I just figured he would be in the middle of pack. But, something made me look up at the jumbo tron thing and as soon as I did, there he was! It was like intuition. He was in the second row, and we watched him walk in. It was like he could feel us because he looked right up at us and waved. That is so crazy because the place was packed and we had no idea what the set up was or where we would be. I thought there was no way he was going to see us. Crazy! It's like he could feel our love, haha!

I mean, just look at how cute he is!! 😍 Haha! 

I forgot to mention that on Monday, I started to feel sick - like a cold sick. When we sat down, I realized I forgot to grab some tissues. So, Cooper went to the restroom and grabbed me a handful of toilet paper. Classy. Anyway, after seeing Murphy's cute face, I just started to cry. Ugh - there goes my feelings spilling out all over the place again. I mean, I wanted to excuse myself and go sob somewhere private. But, clearly that wasn't an option. I had to get myself together. 

The President of the community college spoke and I really liked what she said. She said she gets asked about the type of student that attends the community college. She said that they are extraordinary. To prove her point, she asked the graduates to stand if they are the first to earn a degree in their family. Then she asked the graduates to stand if they are a parent or the primary caregiver. Then she asked the graduates to stand if they had a full-time job while they were in school. Then she asked the graduates to stand if they were getting their Associates Degree before they graduated high school (there is a program where you can earn your associates in high school). By then it looked like every graduate was standing. It was pretty cool. She also said that the youngest graduate is 17 and the oldest is 72. Pretty awesome. 

Ahh, you gotta love that sibling support. Cooper was just "resting his eyes". 

He chose to go eat at Stella's to celebrate (that is the restaurant where he works). I just love going there because I get to hear so many good things about Murphy. So many people come up to us and tell us how much they love him. It fills my heart and I really needed it right then. 

A candle for his birthday...

Just because I can... here is an old post where I shared some good, young pics of Murphy on his 7th birthday. 

Later that night, I took a down turn and really started to feel bad. I had a terrible night and woke up feeling even worse. This has happened before after a hospitalization. I just get so run down. It is my body's way of telling me to chill out and recover. As if I have any control over that. Trust me, I want to chill out. I love to chill out. I wish I could chill out.

Speaking of not being able to chill out... I received a reminder for her next bronch (a follow up from her last bronch in February). It is scheduled for May 27. I just can't do it. I'm going to have to reschedule. But for when? Camp is June 14. I don't know how or where I'm going to fit it in (maybe after camp if the doc thinks it can wait that long). I just can't do it so soon. She has five doctor's appointments on her calendar before June 12th. That is ridiculous. 

Today is Wednesday and I convinced Harlie to come sit outside with me. 

I don't know when she will return to school. Definitely not this week. 

The next hurdle we have is to help Murphy move into his apartment on Friday. So, we have two more nights of him sleeping in his bed in our house. I know, I know, this is great. It is! I have full confidence in his ability to navigate life. I am so proud of him. But, oh, I am going to miss him so much! Feelings aren't either/or. You can have lots of feelings at the same time - like I am both happy and sad about him moving out. Like I said, we are getting our asses kicked right now. I wish so many life changing things didn't happen in such a short time, but sometimes that is just the way it is. 

Well, I didn't get this finished and out on Wednesday. So, now it is Thursday. Harlie has not come downstairs today. But, I have been able to remove the dressing and not put a new one on. I'm just leaving it exposed to the air now. Tomorrow we will remove the sutures. Hopefully that goes well. I also removed her Holter Monitor and put that in the mailbox to be returned. 

That's it for now. Thanks for reading!

Much love,

Christy xo

Spring 2026 Update

Hi. Just going to jump in here and try not to think too much about it. 

In my last post I listed some upcoming appointments. 

Here are some updates:

Electrophysiologist (Pacemaker) - She's seen him twice since my last post. There is a device near her bed that sends her pacemaker transmissions to Children's National every few months. They review it and let me know that all is okay (usually). In February, I learned that her heart had two events. One she's had before and is on meds for already (NSVT). The other one is new to her (atrial flutter, which lasted about three hours). So, he increased her meds and said we just need to watch her. He asked if she was sick during the time period of her events - and she was! He said we just have to really watch her when she gets sick because it really stresses out her heart. Awesome. 

Hepatologist (liver doctor) - they ordered a CT scan with contrast to try to get a better look at her liver. Normally, they would do an MRI, but they can't with her pacemaker. Basically, they were looking for potential cancer, since she is at an increased risk with the extra pressure/work on her liver due to her heart/lungs. So far, so good. 

She had her wisdom teeth extracted and I am shocked that all went well. No issues. 

Opthalmologist - all stable there. Also, sadly, I have given up on the whole occuloplastic surgery that I was trying to coordinate this time last year. That was a mountain I just couldn't move. Turns out they wouldn't consider trying to do both surgeries in the same week even, which would mean another trip to Boston JUST for her eye. I just can't even think about it anymore. 

Bronchoscopy - she had a bronch in February and it was really just a check up. I don't think she's had a bronch since the whole airway reconstruction in 2018. But, my memory is a little fuzzy. Anyway, her local ENT said it has been a long time and we should just check it out. I almost canceled it. It is hard to work in "well checks" when we are already doing so many appointments. But, for some odd reason, I didn't. Anyway, can you believe that she had so many granulomas blocking her airway!?!?! Wow! I really don't know how she was handling her speaking valve at all. Her ENT showed me pictures and it was crazy. Thank God she suggested the bronch! Harlie is definitely tolerating her speaking valve so much better and I really feel like her voice is so much better! She will have a follow up bronch at the end of May. Unless I reschedule it - because I'm writing this post on May 5th while she is in the OR...

In other news:

My Mom went on Hospice in August. We moved her into a house that has a caregiver that lives there. Mom had her own bedroom. At first it was hard on her (it was hard on all of us, really). But, she finally got to know the people there and they were good to her. She had dementia. My Mom deserves her own post, but I just don't have it in me to write about her yet. She declined through the winter. By February, on my way to visit her I was always afraid she wouldn't remember who I was. The last time I visited her when she could speak, she told me that I looked just like her daughter. She also said I was pretty. It was so hard to drive to see her. It was harder to leave. She passed away on March 1, 2026. 

Even though we knew it was coming, I was so surprised at how hard it was. I thought since I know a thing or two about grief, I would handle it better. Not better - maybe I thought I would be less sad. But, it doesn't work that way. Honestly, I'm still sad. Which is probably why I don't want to write about her yet. 

On March 21, Harlie went to the All-Star Prom (prom for exceptional education students in the county). I didn't commit to her going in time to secure transportation - so I dropped her off and picked her up. Tom was out of town that weekend. No matter what, it is always hard to drop her off somewhere. Is she polite to other kids? Do other kids talk to her? Does she talk to other kids? Will she have fun? Will something embarrassing happen to her? She said she had fun.

April 9th - We announced that we were closing down operations for We Heart Harlie & Friends. This was such an incredibly difficult decision. This is also a subject that I feel deserves it's own post. This also makes me very sad and I'm just not ready to write about it, either. 

April 11 - Since she went to the All-Start Prom, I was kinda hoping she wouldn't want to go to her school prom. But, she did. Since she had just worn that other dress (that she's worn before), I ordered a bunch of dresses and hoped one would fit. Thankfully, one did. Well, it was too long, but I was able to just cut off some material at the bottom to make it work. A seamstress, I am not. 

The prom was at a hotel. Cooper and his girlfriend and friends went out to eat before. So Tom and I drove her to the hotel and dropped her off. Dropping her off at a hotel was way harder than dropping her off at the high school for the All-Star Prom. But, her teacher sent me photos and videos of her dancing and that made me feel better. Cooper drove her home and they all had fun, I'm told. I don't know what I'm going to do when Cooper graduates and Harlie won't have him around anymore. I try not to think about it, because it makes me sad and scared. But sometimes I can't help it. 

Cooper picked out his suit and purchased it himself. I don't have a picture of him and his girlfriend, but he selected this suit because it matched her dress. 

April 23 - Murphy and a friend of his drove to Pittsburgh for one night to attend the first night of the NFL draft. Those crazy kids. It is so funny to remember that just a few years ago, Murphy didn't know or care anything about football. Today he is a Steelers super fan and a football expert. Haha! Thank you to our dear friends Mike and Laura for putting them up for the night!

Murphy came back the next day (Friday) so he could attend Cooper's school play - Shakespeare's Twelfth Night. Cooper played Sebastian. He was so great, as was all of the students! It is truly amazing what these kids can do. We have already been super impressed with their ability to memorize and perform all their lines - but Shakespeare? That's on another level. Anyway, it was great - we all loved it. I went two nights. I just love getting to watch Cooper on stage. 

Cooper is in the center, to the right of the girl in the blue dress.

Cooper and his girlfriend (Riley). She was Antonio in the play. 

Mary Ann (aka Grandma) came down for the weekend so she could see his play. 

April 26 - We went to see the Richmond Flying Squirrels for Tom's birthday celebration (his birthday was on April 28th).

Our friend Dave made this happen. It is hilarious because Tom turned 53. Haha!

May 1 - We went to Banana Ball. It was crazy. It was our first time experiencing the chaos that is Banana Ball. 

It was the Firefighters vs. the Clowns. There were "characters" all over the place. 

I would say that it is more like a show with a side of some baseball-like game. It was fun and different.

What's ahead:

May 11 - Murphy's 22nd birthday. I really hope to be home from Boston before his birthday. 

May 12 - Murphy graduates from Reynolds Community College. Now I REALLY hope we are home for his graduation. We are so incredibly proud of him. He worked full-time while going to school and paid for all of his classes along the way, all on his own. 

May 15 - Murphy is moving out and moving in with a friend of his. Thankfully, he won't be too far away (20-25 minutes or so). I am unable to write about this right now as well. Yes, I am so proud of him. Yes, I am so happy for him and excited for him. Yes, I know he is ready. Yes, I know this is the way it is supposed to go. Trust me - this is not the way it will go with Harlie - so I know to be so grateful for the life experiences that are good, normal, and all that jazz. But, I am going to miss him being in our home and sharing our address more than I can say. This year has already been pretty hard as far as changes go (there have been many) and I am just going to need to feel what I feel. 

This year should be the year that Harlie graduates from high school. But, it isn't. This definitely needs it's own post. There are so many feelings that go along with this. Just know that I'm feeling pretty raw right about now. Some days I find myself so angry - at everything. Then I realize that what I'm feeling is just pain. Pain all over. Every interaction I have just causes me pain. Even when I'm happy for someone else, it just reminds of me of what we've lost. 

Anyway, that's it for now. I'll start working on the hospital posts. 

As always, thank you for reading, thank you for caring, thank you for the love!

Christy xo

Harlie Update, Way Past Due

Hi! After long periods of time of not sharing our life with you, it feels a bit scary to start sharing again. So, I'm just going to jump in. (I say that, but I started this post two weeks ago and it has been so hard to finish it! But, I'm gonna do it...)

Harlie returned to school (9th grade) in the fall of 2022.

First day of 9th grade.

Cooper's first day of 8th grade. 

This is the first time she's been in person, full-time since her 3rd grade year. Kinda nuts. She didn't attend one day of her 4th grade year and was on a hybrid of in person/homebound from 5th grade through 8th grade. When her new team met at the high school in the summer to talk about what her return would look like, we talked about starting with half days or something like that. I figured that with all the different classes, it would be easier to jump right in and then scale back if needed. And she did great! She is thrilled to go to school every day, all day. She gets ready every morning and anxiously waits for the school bus to come get her. The negative here is that the bus doesn't come get her until after the late bell rings at school. So, she has been late to school EVERY SINGLE DAY. Plus, we have a 15-minute range of when the bus is coming. Is that even normal? Does every kid standing at a bus stop have a 15-minute window of when the bus is coming? Our kids have walked to school - never taken a bus, so I don't know what's normal. At any rate, she is eager and determined to learn and is making so much progress in her reading skills! Her social skills are getting better, too. Here are some highlights so far...

Harlie turned 16 in September!

We went bowling to celebrate.

She went to the Homecoming dance.

We went to Pugoween (so many pugs in costume!)
and we finally put some effort into her costume.

It paid off! She won 1st place in the Group Costume category.

 

Her 9th grade school photo.

She got a prosthetic ear! It is the one on the left.
She can finally wear her hair down since she can tuck her hair behind that ear now.

She was in the One Act at school - with a speaking line!

She played in the All Star Basketball program,
which she LOVED.

Look at how tiny she is compared to her peers!

As you can see, she has been very busy in school! Going to watch her basketball games was pretty moving. For the first game, I spent the whole game trying not to cry. Okay, fine. I cried for the first 10 minutes, at least. There were just so many emotions all at once. I was sad she was out there, I was grateful she was out there. Then I felt that for all the kids and all their parents. Then I thought man, people are so lucky to be born well. Do people realize that? You can also see that the kids on the court aren't embarrassed or self conscious. They are out there enjoying themselves. They just seem so grateful to be there. I think we could all stand to learn something from them.  

So, overall, things are going well. We've had some nursing issues. This comes with the territory, I know. However, knowing doesn't make it any easier, of course. It is not easy to open up your home, your family and your hearts to other people. Considering Harlie requires a nurse to go with her to school, it is pretty imperative that the nurse be someone we can count on day after day. That nurse is her ticket to her education. Because of that, we found that a nurse provided by the county is the more reliable way to go. She has the same nurse each day and she rides the bus with Harlie to and from school. If she cannot go to school with Harlie, they will try and get a substitute. That is impossible in the home health nursing world. So far, they have been able to get a sub all but one time. So, that's great. We still have Caylee from time to time, but she does have her own career. We are lucky that she still wants to spend her free time with us, though. I've adjusted my work schedule to allow me to focus on getting Harlie ready for school. She still needs help bathing and washing/drying her hair. 

(As I mentioned earlier, I started this post two weeks ago. Right after I started it, her school nurse gave notice and left to accept a job elsewhere. Ahhh, it is so hard when she gets attached, and then they leave. We are back to substitutes for now.)

Anyway, we are without a full-time nurse for the first time in a really long time. I have to think that this means we are getting somewhere. Hopefully somewhere good. Harlie is 16 years old now. And she wants to live a more normal life. Her ultimate goal is to be able to go to school without a nurse at all. I know she can get there. But, it is really terrifying to think of her being in that big high school without someone looking out for her all day. But, just like with all things that Harlie is determined to achieve, we will figure it out. What she wants, is what I want. 

As far as how she's doing medically, well, that's another story - and honestly, the real reason I finally sat down to write again. 

In order to tell you, I have to go back a bit. Here's a summary...

April 13, 2021, Harlie had surgery at Boston Children's Hospital to implant prosthetic, titanium temporomandibular joints (TMJs).

April 18, 2021, Harlie was discharged (her tablet was stolen from her bed while she slept) and we drove home.

To write this post, I had to go back and refresh my memory on this time almost two years ago. Ugh. I don't know how we lived through this. And I don't know how we're going to do it again. MFer.  

April 21, 2021, After we got home, she just didn't stop bleeding from her incisions. It was a nightmare. She was readmitted to the hospital just a few days after being discharged from BCH.  She really should've been admitted sooner, honestly. I pushed it, hoping for it to stop on it's own. 

From May to August, some kind of growths appeared at both incisions (one on each side near her ears). We saw several different docs, but no one really knew what they were. They were not filled with fluid, even though they kind of looked like large blisters. I finally sent some pics to her ENT in DC and he said he needed to see her in person. So, we went to DC and he said they were abscesses from an infection. Either the constant bleeding a few months back allowed an infection in, or the infection was already there from the OR. I know everything is supposed to be sterile and all in ORs, but it would not be the first time she came out of an OR with an infection. Anyway, her ENT brought in an infectious disease doc (ID) and she is great. Our goal is to save her prosthetic TMJs and she was very supportive of that goal. 

We scheduled a time for Harlie to go into the OR and he removed the growths. They cultured the tissue and it came back with staph. They put in a PICC line and put her on IV meds for two weeks. But, soon after, the growths started growing back. Her ID doc put her on Doxycycline through her g-tube and she's been on it ever since. Her ID doc explained it to me something like this - the staph is sticking to the titanium TMJs. The staph knows that we are trying to kill it with antibiotics, so it forms a protective film/barrier over itself. The low dose of Doxy will hopefully eventually break down the protective layer and then get to the staph to kill it. 

Things settled down for a bit. We attempted to take her off the Doxy twice, but each time it looked like something was brewing. The second time was in June 2022. So, her doc said we should just keep her on it for another year. 

In November, 2022, a growth started growing back on the right side only, despite still being on Doxy. So the Doxy killed the bacteria on the left, but not on the right, I guess. In January, 2023, her ENT had to remove the growth. Within two weeks, I could see it was already growing back. This means that the Doxy isn't doing much, if anything at all. This is not good. After working with her ENT and ID for almost two years, they said we have exhausted all treatment options and it is time to speak to her surgeon in Boston. That TMJ has to come out. 

This is devastating. There is nothing good about this. There is no positive way of looking at it. I consider myself a pro at finding the positive view and there simply isn't one. This is only going backwards. This is re-doing an absolutely AWFUL surgery that isn't designed to be re-done. This is probably the first time we've gone into a surgery without having hope that she will come out better than she went in. Well, I guess that's not totally true. We hope that the infection will go away for good. I have to clean this infection area very often, and it hurts her. But, her function won't improve. Heck, her function could suffer for all I know. 

Here's what must be done: The surgeon has to remove her right TMJ and put in a temporary spacer. We take her home and let her heal. We have to make sure the infection is gone. I suppose they will make a new TMJ during this healing time. I don't really know. Then we return some months later and they will remove the spacer and put the new TMJ in. Did you see the pics of her getting her last TMJ? I don't know how we are going to do this again!!! And there's no guarantee that this all won't happen again! I can't even.

I don't know if I ever blogged about it, but that summer (2021) she ended up having to see a hematologist about her bleeding issue. She has some kind of platelet disorder. I don't remember exactly what. So, now, we need to consider that before going into this surgery. And we need to figure out a way for her to have her tablet and secure it when she is sleeping in the hospital. I can't believe this is something we have to worry about. 

Surgery is Monday, March 27. She will need lots of pre-op appointments, so we will have to go up sometime the week before. 

Tom's work schedule is booked. He has big projects starting, going, prepping, et cetera leaving no windows for time off. But he knows I cannot get Harlie to Boston alone. I don't know what he's going to do but I know he will figure something out. We managed to get my favorite Airbnb, so that's good. I do like knowing where we will stay - the layout, what we need to bring, how I'll walk to the hospital, stuff like that. This place is really comfortable - small but not too small and familiar, in a good way.  

I wrote most of the above two weeks ago, when we found out her surgery date. I've had a hard time getting back to this post to finish it. Since I started it, we got our pre-op appointments scheduled for the Friday, March 24. So, we will go up on Thursday. Luckily, that gives Tom a few days to get his project underway so he can be gone for a bit. 

I'm totally dreading this surgery. A few people have asked me if she'll be okay. I guess since I'm sharing anyway, I'll tell you the ugly truth. I always worry if she'll be okay. I never go into a surgery thinking it is no big deal. Never. I just try to hide my worry from everyone. No one wants to talk about that kind of worry anyway. 

On a lighter, more positive note.. Harlie is going to summer camp! YAY!

You might remember that our boys have been going to summer camp - Winona Camps for Boys in Maine for about six or so years. Well, Murphy aged out now. But, Cooper still goes. Every summer, Harlie has watched them go and wished she could go, too. I think she thinks that WE don't want her to go. But, that is so NOT the case! We'd love for her to be able to go! I've tried to get her into several special needs based camps - but the trach has always been a deal breaker. But, this camp is only for kiddos with trachs! 

I found out about Champ Camp from a fellow trach mom/family. Her daughter went to camp and graduated as a camper this past year. It looks amazing. So, I applied in January and had a phone interview. We talked over some things. I totally get that Harlie is a lot. I'm not blind to that. But, I also know that she manages it so well, really. Plus, I have the full support of the docs that know her best. We then had a zoom interview with different people and I completed a bunch of paperwork. We got official word last week that she was accepted! Hallelujah! 

The camp is in Indiana in June. Oh, what an adventure for Harlie! We are so excited for her! Hopefully, this surgery will go fine and she will heal up and be ready by June. That's the plan anyway. 

Okay, I'm just going to end this here. I'll blog more during her hospitalization. 

Thanks for all the love!

Christy xo

The last month...

I know.  I've been absent again.  I have just not been "myself" lately, and it's hard to want to blog when you don't feel like yourself.

I have so much good to say about the We Heart Harlie and Friends event and the Deep Run Marathon Dance, but I am seriously lacking the energy to pull myself out of this funk for that right now.  Soon, I hope.

The real reason I'm writing right now is because I ran into two friends today who asked what's been going on.  And they both said that they want to know, even if it's not good.  So, thanks for that Katie and Stacy, this is for you!

The last two weeks have been an adjustment around here.  Cooper had swimming lessons each day and Murphy's swim team practice started.  Thank goodness my dear friend Bethany and I signed our boys up for the same sessions.  We took turns driving them there, which was a life saver.  The first week of adding those appointments on my calendar were complicated by Harlie having a.... fever!  Yes, the girl who never  rarely has a fever, had one.   So, that was a little freaky.  After seeing some hellacious infections not give her a fever, it makes you wonder what's brewing that does give her one!  We waited it out and didn't even take her to the doctor.  She's fine now.

Anyway, her being sick meant I couldn't take her to the pool for Murphy's swim practice.  Our nurse leaves earlier in the afternoon, so I don't have coverage then.  So, I called my Mom.  She received her first round of chemo last month, and was feeling better and up to coming over.  I had just seen her the night before at my nephew's senior soccer game.  But, she was wearing a hat, so I didn't notice.  I knew she was going to lose her hair, I just didn't realize it would happen so fast.  So, I guess that sort of caught me off guard.  Makes everything more real, I guess.  We had not told Murphy anything yet.  And when he saw her he said, "Nana, did you get a haircut?"  Ugh.  So, when Tom got home we told him that Nana is going through chemo for cancer.  Odds are that she'll be okay.  The cancer got into some lymph nodes, so the chemo will hopefully catch any that sneaked by.  She is in great spirits for the most part.  I know where I got my positive outlook from.
 

Here is my Mom and I on May 10th.  Her and my Dad came over for dinner to celebrate her birthday (the 9th), Mother's Day (the 11th) and Murphy's birthday (the 11th).  This was taken before she started to lose her hair.

Whew, I feel like this story is just getting longer and longer...  I guess that's what happens when you don't write for so long.

Anyway, thankfully my Mom helped me out that first week of practice so I could take Murphy to the pool and leave Harlie here with her.

The next week my Mom received her second round of chemo, so she really wasn't feeling well then.  I think she's starting to bounce back some now.

Harlie got better, too.  I don't know what she had, but it went away.  Although the next week brought another ailment her way.  For some reason (still unknown) she started coughing up blood from her trach.  This started right as Memorial Day weekend got underway, so no doc to take her to except the ER.  She really seemed fine.  So, I let it go.  After a few days it started to get better and each day we saw less and less blood.  She seems all good now.

But when we went to refill one of her breathing treatment meds, we found out that Medicaid no longer covers one of her meds.  In looking to replace it with something that they do cover, her docs put her on Albuterol.  Since that raises the heart rate, they wanted me to monitor her heart rate during treatment to make sure she was okay.  This made us realize that her heart rate is a lot slower than I thought.  I always remember it being in the high 80s.  Well during the treatment it stayed at 60 (or just above) the whole time.  Harlie's pacemaker is set to keep her above 50 beats per minute at night while she sleeps and 60 beats per minute during the day when she's awake.  I suppose this means that her heart rate is now slower than 60 bpm, which is causing her pacemaker to fire.  Apparently more often than I realized.  She will get her pacemaker checked at the end of June.  So, I'll have more data then.  And even though this may be "normal" for her heart, it still makes mine hurt a little.  I know she has a pacemaker for this reason exactly.  I just don't like the idea that her heart needs more help than it was getting.  Especially since this feels like a new change.  And she's seven.  Just more reminders....

Anyway, here's the last month in pictures...

May 11 - Mother's Day

I started the day out with a great run with friends.

And when we got back some of the dads had set up some goodies - mimosas!

Thanks Glen!

And food!

Thanks to all who supplied the yummy food!

Then I went home and got the family and we went to lunch.  Not only was it Mother's Day, it was this guy's 10th birthday!

Me and Murphy

Hard to believe he's TEN!!!  Here's what he looked like ten years ago...

5 weeks early, 5 pounds, 10 ounces

He was such a little sweetie.  Still is, for the most part.

After lunch we went to Belle Isle.  I love going there because we can take Rooney.  It has become our Mother's Day tradition.

Yes, sometimes Rooney likes to take advantage of the stroller.

Murphy - TEN years old!

One of my favorite family pics!

The next week, some kids I know really wanted their toe nails painted...

So, I painted them.  No crummy comments (or thoughts), please.  Later in the week when the polish was wearing off, I took Cooper's off with some polish remover.  Cooper looked at me in amazement and said, "Is that how you erase it?"  He's so funny.

Pediatric Connection is the company that provides our nursing and medical supplies and equipment for Harlie.  They wanted to get some pictures of some of their clients, so we went there for a quick photo shoot.  She was a ham.

Have you ever seen the movie Milo and Otis?  If you have, then you will probably understand why I thought it was hysterical when I walked in the room and found the two of them hanging out with this stuffed sea turtle.

What are the odds?

The other day this adorable neighbor said, "Here's your dog."

He is a very social pup and likes to make the rounds to all our neighbor's houses.  And if he sees the door open, he will gladly go in and do some vacuuming in the kitchen!

Tom and I went to a wedding... and he wore a bow tie!

Niki and I

Another pic of Rooney, just because I love him so...

Cooper had his LAST day of preschool.  Yes, he will start kindergarten in the fall.

Our kind neighbors let Tom borrow his Harley for a little ride.

Our Harlie loved it.

So cute!

One night, Tom and I were out at a bar celebrating a friend's Ironman achievement (Rick Tangard is awesome, by the way) and in walked my niece.  That was a first!

Me and Jordan

I started this post a week ago.  But I get so little time in front of my computer these days, I wasn't able to finish it.  Between swim team, working part-time, running, etc., it's been crazy.  But, after school is done (a week from tomorrow!) swim team meets in the mornings, which will be SO much better.  Right now it's from 5 to 6pm.  So, I have to take all three kids, plus all of Harlie's gear and oxygen and I have to watch her like a hawk. So, we haven't been getting home until 6:30ish, with three wet kids, no dinner and Tom's been working late.   I hate to sound like a wimp, but it's exhausting.

The first time I took Harlie to the pool was a little stressful.  I really felt like everyone there was staring at us.  And I'm sure that's not true.  Or, perhaps they were admiring how cute she is... regardless, I felt super self conscious and I just wanted to burst into tears.  In a weakness, I saw a friend and said to her, "Is it just me, or is everyone staring at us?"  And then I instantly regretted it.  It sounded really crappy.

But, we got through it.  And it was fine.  I'm sure that with more practice, I will get better at handling things and people will get used to seeing the oxygen tubing in the pool.

She is a lot of work at the pool.  But, she's worth it.  She really loves it.  Since she needs a float with a built in seat, we use two infant floats.  She's seven.  I guess we're really lucky that she's so small for her age.  We really go through some small oxygen tanks, though.  With her kicking her legs, I have to up the flow to keep her sats up.

Thank goodness for "adult swim" times!

Cooper had his last soccer game of the season.  Woohoo!

Tom and I went to my niece's (Jordan) college graduation party and my nephew's (Cutter) high school graduation party (they are siblings).  Then we left there to go to a wedding reception.

Tom and I

Allison and I

And, I decided to make another go for the Richmond marathon in November, along with these other crazies.

Keenan, Wendy, Natalie, Michelle, Molly, me, Aimee

I know, I'm nuts.  And, honestly, I'm not even sure I can pull it off.  But, I suppose you'll never know if you don't try.  So, I'm going to go as long as I can go.  My main concern is overall fatigue that impacts my ability to handle my life at home.  If that happens, I will back off and switch to the half.  And I will have no shame.  I no longer compare my time with other's.  Any day I can run is a good day, no matter what my time is.  And that's good enough for me!

Oh, and here's one more photo of the dog.

Look Mom!  Rooney's an astronaut!

So, that's what's been going on here.  Please send my Mom some good vibes for her chemo treatments.  This last one was a tough one.  She is going to take a little longer in between to give her a little more time of feeling good.  So, hopefully that will help her fight the next one better.

And things with Harlie are status quo for now.  Which, is a good thing.  It feels a little weird, though.  I feel like I'm dropping the ball somewhere.  So, I decided to work on getting her an appointment at a hospital that specializes in heart/lung transplants.  I don't like not knowing where we are.  I'd rather hear whatever they say, than sit here, not hearing anything at all.  The unknown seems scarier.  My imagination can take me to places I don't want to go.  So, I'll update you on that as it progresses.  I have a feeling it's not something that will happen soon, though.

More later (I hope!).

Much love,
Christy xo