Monday, October 28, 2019

Sending a Transmission

So excited to do one of her favorite jobs!

No big updates here, just a peek at how we send the data from Ramona's loop recorder to the doctor's office (and, more importantly, how much she loves doing it). 😊 The loop recorder itself is implanted under the skin on her chest and is always watching for irregular heart rhythms, but we also have a separate device that stays on her nightstand and is used to collect and send the data that has been recorded. This device automatically transmits a report every month, but we occasionally have to send a report manually as well.

When we need to do it manually, Ramona knows exactly what to do! For some reason, she thinks it's SUPER fun and asks to do it all the time. It only needs done every couple of months, but she is so excited when she gets to do it. 

The process starts with both sisters squealing with excitement and racing to their room. This is an important step in the process and cannot be skipped. When that is done, Ramona grabs the receiver and holds it next to her chest. I help her move it around until the screen shows us that we're in the right place. Then, she waits for the green line to go across the screen, hangs up the receiver, and watches for it to give us the ✅ that means it transmitted successfully. 

That's it. 

But, from the excitement of both squealing sisters, you'd think we just won a major award! So much joy over such a simple thing. 💗


Watching that screen like a pro.

Ramona is doing great right now. While we continue to pray for the miracle of her heart being healed, we also recognize the miracle of her being able to live such a happy, active, full life with the heart that she has.

Also, if she were talking to you today, she would want to make sure you know that her birthday is coming "soon." She's been VERY anxiously waiting for her birthday for the last several weeks (it's still over a month away...) and is really hoping it will snow that day. 😂

Prayer requests:
- For her heart to be healed
- For her to knock out some cough/congestion crud she's fighting off and STAY HEALTHY (I don't think she's been in the hospital for general illness since early 2018? Such a blessing that she's fared so well!!!)
- For birthday snow (because God cares about even the smallest details 💗)

The Lord has done great things for us,
    and we are filled with joy.
Psalm 126:3

Friday, October 4, 2019

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 -

Sunday, May 19, 2019

"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

Sending a Transmission

So excited to do one of her favorite jobs! No big updates here, just a peek at how we send the data from Ramona's loop recorder to ...