2 Appointments and an AED

She just loves breakfast. Can you blame her?

Hi, friends! 😊 I know I had promised an update after Ramona's August appointment, but a bump in our summer plans caused us to rearrange.

St. Louis Zoo!

We took a vacation with my family in St. Louis back in June, and while we were there Ramona was complaining of what seemed to be chest pain. This was new for her, but it only lasted a second, so we decided to keep an eye on her and see if anything else came up, or if she was just cranky/tired/needing attention/etc. Then it happened 3 more times the next day, and she seemed worried each time. They were all brief - she would just say she was sick or hurt and touch her chest, and then lie on my lap for a few minutes. Then she's be good as new and chasing her cousins around the table again. We had taken the transmitter for her loop recorder with us, so we were able to send a transmission to check for arrhythmias, but it didn't show anything. Since this was very out-of-character for her (and happened so many times), we ended up bailing out of vacation a day early to take her to her regular cardiologist just in case.

They did an echo, an ekg, and checked her loop recorder again...and none of them turned up anything. So we don't know what was going on. 🤷 They had turned off the setting on her loop recorder that would watch for high heart rates a while back (because it was over-sensing and made the device useless, and we were more concerned about low heart rates with her anyway), so they turned that back on to give it another try. It is working now, which gives us a wider range of things it will catch, so that's good! Another plus was that Ramona wasn't as nervous about the echo and EKG as usual, because we had just been there a few weeks before. Since everything looked the same, we moved the would-have-been-August appointment back to late September.

After this trip to the doctor happened, little miss smarty-pants thought she could go see the doctor anytime she said she was sick. She would do things like pretend to cough and then say "I think I'm sick. I need see doc-tor aw-bah-wo" (Albaro). Which was adorable, but not helpful. 🙄 Luckily, we only had to wade through that pool of deception for about a week before she moved on.

She looooves to go to the park.

Fast-forward to last week, and we're at her most recent appointment. She was nervous before the echo this time, but a small toy plus cartoons cheered her right up. She adamantly dislikes the "squeezy" (blood pressure cuff), though, and we haven't been able to hack that one yet. But, still, she was a champ. She is so brave and seems so grown up.

Silly echo pic. 

I'm not allowed to throw away the EKG
stickers until she is done with them.

Again, everything from the echo, ekg, and loop recorder was stable. They had mentioned her pressure getting a little higher in May, but there was no concern about it this time. I didn't think to ask whether it had gone down or stayed the same, but either way they were happy with it. And we're happy with that. We're always grateful to hear that things are stable.

Another thing we're grateful for is that Ramona sees her appointments as a positive, mostly fun thing. Other than the Squeezy, she's usually eager to do her jobs and excited to see her doctor. We found some cheap plastic laptops a while back, and she pretended to be the doctor while we waited in the exam room, which made this trip even more fun than usual for her.

Future doctor???

But she only responds to "Dr. Albaro" when
she's in character. 😂

Before we left, Ramona asked the real Dr. Albaro is she could take a picture with her, and she very kindly obliged. We headed out to the van so we could go get some lunch, and as I was putting Ramona in her car seat she yelled "Wait! We forgot to see that guy! That guy has to do my thump thump!" That was code for "We didn't see the electrophysiologist, who we don't usually see, but we did last time so it's obviously routine now." She cracks me up :)

We went to Chick-fil-a for lunch so the girls could play, but Ramona has been a SUPER early riser lately and was so tired by the time we go there that she fell asleep while she was eating. Maybe she shouldn't wake the whole house up at 5:00 AM next time? We tried to carry her to the van after we had eaten and Daisy had played, but as soon as Nathan stepped out the door she popped right up and said, "Hey! We forgot to play in there!" So we went back in.

😴

We're set to go back again on December 30. It sometimes feels kind of wearing to repeat the same cycle over and over with nothing changing. It feels like we're always waiting for something, but we don't know what the something is or when (or if?) it will come. But, we always feel SO incredibly thankful that she continues to live a wonderful, free, joyful life. We're also grateful that we are able to check in every few months to see what's happening on the inside.

In other news, Ramona's doctor thinks it would be best if we had an AED (Automated External Defibrillator) to keep at home just in case. Though she is doing so well, we do, of course, still have a lot of concerns about her, and an AED would give us all a little more peace of mind. Our insurance company is even going to help pay for it, which is awesome! The only problem is that we have to get it from an in-network medical supply place, which we haven't had any luck with yet. I've gone through 40+ in the state of Illinois (holy phone calls, Batman), and none of them even carry AEDs. We were also given some leads on possible grants and/or coupons we can try to apply for if the insurance doesn't pan out.

Prayer Requests:
- For Ramona's heart to be healed
- For her to continue to be so happy, energetic, and full of life
- For us to find a supplier that our insurance will accept for her AED

And here are a few pics of some of the things Ramona has been up to this summer:

She got to see both of her uncles! She's a fan.

So much trampoline time!

Walks to the library.

Visiting her great grandparents!

Posing for a picture. 😂

All funned-out after a day at the zoo.

😍😍😍

Ice cream sandwiches in the pool.

Sister had a birthday!!!

She got to feed a real baby! Her life is complete.

The girls made a lemonade stand
for Mimi's garage sale.

She bought a VERY exciting toy with her
lemonade stand money.

At the carnival with a squishy cousin.

Grandma Sheri took them to see Disney on Ice.
This is Ramona's face when Anna and Elsa
came out.

And then Anna and Elsa started singing. She
kept saying "Oh my gosh, oh my gosh..."

As you can see, her summer has been FULL of her favorite things: toys, playing outside, and time with so many of her favorite people (many of whom aren't pictured). Thank you for continuing to pray for her!

But God demonstrates his own love for us in this:

While we were still sinners, Christ died for us.

- Romans 5:8 -

"Thump thump"

Silly umbrella girls. 

Hello again! I'm always glad when these updates are a spread out, because it usually means we've had a quiet couple of months between appointments. We've enjoyed saying "goodbye" to winter and FINALLY welcoming some beautiful weather!

Ramona had her three-month check-up with her Cardiologist last week. We talked about the appointment ahead of time and played "doctor's office" to practice. We always start with the echo at these appointments, and she did great with it this time. She sat on my lap and watched cartoons. Then they brought in the blood pressure cuff and she started crying as soon as she saw it. It must squeeze her arm too tight and hurt her given how much she hates it. Once that was done, she cheered right back up and knew exactly what to do to get weighed and measured.

Holding hands and watching cartoons.

She had been so worked up when they took her blood pressure that it read much higher than it should be, so they had to try to do it again. They did the second one manually, and Ramona was nervous, but she didn't melt down like she had the first time (I think because it looked and felt different from the machine they usually use). As they were doing it, Ramona started to get worried, but then it was done before she started to cry. When they took the cuff off, Ramona gasped and said "Me did it!" as if she couldn't believe she'd done it. 😂 She was so proud of herself. She also got an EKG, which she did great with.

ECG champ.

Unfortunately, the doctor is seeing some changes in Ramona's heart. She was concerned that it might be getting slightly thicker, but, more significantly, she is seeing a higher speed/force of the blood flow as it's leaving her heart. The inner walls of the ventricle now touch when her heart contracts, which seems to be the source of the change in flow. Interestingly, it also changes the sound of her heart murmur. We don't think we need to do anything about it quite yet, but if it continues to progress as it has in the last 3 months, we would probably need to talk about some serious stuff at her next appointment. On a happier note, the doctor let Ramona and Daisy both listen to their own hearts with a real stethoscope, which was pretty exciting for them!

Picking some stickers! 

Ramona's doctor decided that, given the changes she saw, we should go ahead and get a new chest x-ray and some blood work done. She hasn't had either of these done in over a year, so we needed to check for changes there and also have more recent info to compare to down the road. We talked to Ramona about what the Xray would be like (we didn't mention the blood draw 😬), and she seemed okay with it. I, on the other hand, was a nervous wreck. She generally did not have good luck with blood draws and IVs when she was in the hospital last year, and I was not looking forward to that crap show again.

Getting her chest xray.

But, in the end, she did AMAZING with both of these tests. The pic above is of her getting the X-ray. She was so brave, and did exactly what they asked her to do. (Her aunts had wrapped a couple little presents for her to bring, which she was pretty excited about, so I think that helped.) For the blood draw, she was nervous, but when they poked her she just frowned a big sad frown. That was it. They got it on the first try and it was done in no time! No tears and no fighting. 😲 She was seriously amazing. She was so proud of herself again, and they loaded her up with stickers and a sucker, which she was pretty pumped about.

All done! 

Presents from her aunties.

When she told everyone about her appointment later that day, she would describe it by saying "Get a poke" and holding her arm where it was poked, then touching her chest and saying, "Take a picture, thump-thump, thump-thump." She always describes the doctor using a stethoscope as "thump-thump," too. It's pretty cute.

Anyway, the results of the additional tests were reassuring. The X-ray showed that her heart is certainly enlarged, but it's not different than it was a year ago. What they were looking at in her blood (BNP) still wasn't normal, but actually showed improvement from the last time it was tested, so we're okay with that. Our next appointment is currently scheduled for August, so hopefully we can lie low until then.

Even though speed/force of the blood moving though her heart is concerning, her overall heart function is still very good. And, her quality of life is excellent, which is such a gift. As you'll see in the pictures below, she's silly, adventurous, and SO happy. It's such a blessing to be able to see her live so fully from day to day.

PRAYER REQUESTS:
- Thanks that she did so well with her extra tests and that it wasn't traumatic
- Thanks for everyone at the doctor's office - they're SO good and sweet with her
- Thanks for the fullness of her life
- For her heart not to get worse between now and her next appointment in August
- For an uneventful summer
- For her heart to be healed

Thank you for continuing to pray for her! And here are some of her recent adventures:

I love the way she 's looking at Daisy. She
admires/copies her, but is also fiercely
protective of her.

She was also fiercely protective of this salsa.
She cried and blocked us if we tried to share.

Wildlife Prairie Park

Non-stop goofiness from these two.

Happy Easter! Jesus is alive!

"Reading" one of her favorite books.
(It's a Playmobil catalog.)

I was tired just watching Papa pull this
train full of cousins around the driveway.

Nathan's birthday!
*cough*35*cough*

The Carnival! She LOVED the rides,
a corndog, and the duck game.

She would come around the circle
squealing and laughing. 

Always eager to help.

When you pass through the waters,

    I will be with you;
and when you pass through the rivers,
    they will not sweep over you.
When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.

- Isaiah 43:2

Happy Heart Month!

It's February, which means it's Heart Month! Not only that, but the week of Feb 7-14 was dedicated to Congenital Heart Disease (CHD). This includes Ramona's Hypertrophic Cardiomyopathy. Between the CHD moms I've met and the heart-related Facebook groups I follow, my feed has been full of stories about precious little heart babies and equally precious bigger heart kids. There are two things that have really weighed on me as I've read through all of these stories. First, as I've already said, these kids are so. precious. They are treasured, loved and valued. Even with the extra worry, extra work, and extra cost that comes with them, there's no denying that their families wouldn't trade them for the world. Second, we are incredibly blessed with how easy we've had it with Ramona. We haven't had to worry about feeding tubes, developmental delays, oxygen levels, multiple medications (none at the moment), or any of the other issues that seem to so often go hand-in-hand with heart conditions. She continues to grow, thrive, play, and live like a normal 2 year old. Really, it's crazy how easy she is. We certainly don't deserve it.

We had a heart check-up on Tuesday, and everything is still basically the same. No healing yet, but we are so thankful for how well she's doing despite how her heart looks. We spent a lot of time in preparation a day or two before this appointment, because her last few echos have been ROUGH, to say the least. In an effort to avoid pinning down a hysterical, sobbing toddler yet again, I walked through the process with her several times. We practiced what we would do, looked at pictures from previous visits, and got excited about a "special treat" (a.k.a. cheap toy from the clearance aisle) that she would get while we were there. Each talk ended with her saying something like "Yeah! Okay!", until we were getting ready to go the morning of the appointment. We went through it one more time and I told her we were going to go do it now, and she looked at me very seriously and said "No. Not do that." *sigh*

Getting checked in before her echo-cardiogram.

When we got to the small room where they do the echo, she was nervous but let me take her shirt off and sit with her on the bed. As we were getting situated, she started to lose it and began to cry. We crossed our fingers and popped out a new toy, which was quickly greeted with a teary "Oh...Okay!" and those tears dried right up. That was 75 cents well spent! With her toy in hand, we watched a puppy cartoon and breezed through the echo.

Watching a puppy cartoon.

I was feeling quite satisfied with myself for how well the echo went, but, for all the time I spent practicing echos at home, I never thought to go over the blood pressure cuff or pulse-ox. *facepalm* Since we'd already brought out the big guns (tiny toys), we just had to power through a mess of a vitals reading. Her heart rate came in a little higher than usual, but hysterics will do that to a person.

I made sure Nathan got a picture of these steps
so that we can go over them next time, too.

Daisy helped with the weighing and measuring, as usual, and then the girls had some fun in the exam room while we waited to see the doctor. (Maybe we need to have Daisy do the pulse-ox next time, too?)

They always play hide and seek, even
though there are literally three hiding places,
and none of them actually hide you.

She was excited about the seat she found.

We met with the doctor, and Ramona was nervous about the stethoscope, but her doctor is very good at putting Ramona at ease and even making her laugh. She was happy with how well Ramona is doing and glad that everything is still stable. We did learn something new, though. We knew that the walls of her left ventricle are exceptionally thick, and we also knew that this makes the cavity inside smaller than usual. We didn't know that when her heart contracts, the inner walls of the chamber come very close to touching (or "kissing"), which has the potential to cause the valve (I'm not remembering clearly if it's the actual valve or the area around it) to essentially get pinched, which would prevent the blood from being able to move through the heart. That is one of the things they're monitoring and one of the reasons she has new echos done every two to three months. They haven't seen any signs of this happening yet, but we need to make sure we're keeping a close eye on her heart so that we can adjust our course if it seems like we're heading that way. They also still haven't had any issues with her thickened muscle obstructing the flow of the blood leaving her heart, which is good news, too.

They had this cute heart wall with capes set up
 for taking pictures.

😍 Seesters 😍

Even though Daisy's heart is perfectly normal, she got a heart wall picture and new toy during the echo, too. Ramona's health is a big part of all of our lives, and we want to keep things as normal and similar between the girls as possible, which, for now, means treating an appointment day like just another day running errands. Is that the right thing to do? *shoulder shrug emoji* But it's working for us and for the seesters.

PRAYER REQUESTS:
- For Ramona to continue to thrive
- For her to stay healthy (she's avoided almost all illnesses the rest of us have had!)
- For her heart to be healed

Basically the same requests we've had all along. But, we continue to lift them up again and again, because we know they are heard even if they aren't answered on our schedule or our terms.

Aaand here go the pictures. 😁 We celebrated Christmas early at our house so we could head to Florida and celebrate with family there.

Elsaaaaa!

We got them a dollhouse, and Ramona will
play with it for hours. She loves people that
came with it and uses them for everything.
She even asks to take them to bed at night.

Playing with GG.

At the zoo with grandma and the cousins!

Feeding giraffes! Ramona was not a fan,
but Daisy loved it.

😍

That's Daisy and Nathan in the tube. Ramona passed
 on this one, too, which is understandable.

Ahhh, flamingos. Definitely more her speed. The
humidity made her hair so curly!

Sharing binoculars with her cousin.

Cute cousins! 😍

Stretching our legs during our very long
drive home.

Then we came home to sub-arctic temperatures
and mounds of snow and endless winter. It
was fun at first, but I think I speak for America
when I say we're totes over it now.

Their aunts helped make an igloo.

Celebrating great grandma's birthday, and they can't keep
their eyes off that cake. 😂 They ADORE that baby cousin
sitting between them, and she was probably glad the cake
distracted them from her for a while.

Movie night.

Totally random, but too funny not to share:
This is my tiny nephew who really needs to
work on his IKEA endurance. 

This was taken first thing Christmas morning.
Even her hair was excited.

"This is the day the Lord has made;

let us rejoice and be glad in it."

- Psalm 118:24