Sunday, February 9, 2020

AED in the House



I realized I didn't mention this in the last update, but we did get an AED (Automated External Defibrillator) for this kid. The insurance didn't pan out, but the Children's Cardiomyopathy Foundation gave us some resources that helped us save hundreds of dollars on the machine and pediatric pads. (They all come equipped for adults, so you have to get the pediatric pads separately.) It still wasn't pocket change, of course, but it was much cheaper than we had expected. Just another way this girl has been provided for and cared for. 💓

The whole thing fits in the backpack we formerly used as a diaper bag, so it's easy to take along with us, and we don't leave home without it. I pray that it can just stay in that backpack forever and that we never have to use it.

Side note - Did you see that picture up there? The one of that tall girl with long hair that you probably hardly recognize? WHERE DID MY SQUISHY BABY GO?

Anyway, not much else to report. Both girls had a run in with some kind of virus in January, but, thankfully, Ramona handled it well (no puking, drank lots of water, and fever wasn't too high) and it was pretty uneventful. Big sister did throw up a few times, though, but even then she found time between puking on me to tell me that my nose hairs were gross...as if that were currently the grossest thing going on in our house. 🙄😂 I don't know how I ended up with such funny kids, but they sure keep our home light-hearted and full of laughter!

Little sis making popcorn, and big sis pretending
to be a generic celebrity who is gracious enough
to pose for pictures with her adoring fans.

Posing every time I try to take a picture. 😂

Swimming with Mimi.


She made an endless loop climbing the ladder and jumping
in the pool the entire time we were swimming.

$1 per game bowling = hours of family fun!

More posing in TINY BOWLING SHOES.
And that's the story of how I died.



Thanks for praying for our sweet girl and her special heart!


But God demonstrates his own love for us in this: 
While we were still sinners, Christ died for us. 
- Romans 5:8


Wednesday, January 1, 2020

Happy 2020!


Happy New Year! And I guess happy Halloween, Thanksgiving, Christmas, and a couple of birthdays, because we've had ALL of those since we last checked in. 🎃🦃🎄🎂😊 They say no news is good news, and we're entirely grateful that 2019 had so little news for this girl.

We ended 2019 with one last heart check-up on December 30, and we were thrilled/relieved/grateful to hear that everything is still stable. She looks (and acts) like a million bucks on the outside, but I always breathe a sigh of relief (and need a nap of relief 😂) after being reassured that her extra-special heart is still doing it's job so well on the inside.

We practiced ahead of time for her appointment by "playing" through all the steps and looking at pictures from previous visits, both of which usually help with her nerves on check-up day.

Using a flashlight to "take a picture of you heart"
(a.k.a. give me an echo) at home the night before.
She wears her stethoscope around her neck now.

Once we were at the doctor's office, she was a little nervous and very serious during her echo, but that's because she knew the dreaded "squeezy" (a.k.a. blood pressure cuff) would be next. She did great for the echo, but the squeezy was a disaster, as usual. 😢

Got half a smile from a snap chat
filter during the echo.

Once the squeezy was done (phew), it was smooth sailing through the rest of the visit. :) She describes the EKG as "they put on stickers, put on cwips (clips), and I hold berry berry still, like this" followed by her holding very still, indeed. 😂 She also got weighed and measured, saw the doctor, and very nearly talked the doctor's ear off. 

Still teary-eyed from the squeezy, but feeling
much better. And holding very still.

We played a toy-hiding game while we waited
to see the doctor. She closed her eyes while I
hid her toys so she could find them.

Post-appointment treat. She promptly fell
asleep and I had to peel it off her clothes.

She never lets us forget her sticker after an appointment, but this time she also got to choose something extra, and she picked a craft kit to make a felt lizard. She loves doing projects and helping me with things, so it was a good pick. :)

Sewing a lizard head. It's still a work in
progress, but it's been fun.

We'll have her first check-up of 2020 in 3 months (late March). It's amazing to look back on 2019 and see how normal of a year it was. An entire year of memories that don't include a single hospital stay or any big scares. What a blessing.💓 She did have a run in with some kind of cold/virus/something this fall, with a cough that lingered for many weeks, but it's finally gone and she easily able to stay home during all of it. I think I can count on one hand the number of times shes been sick in her entire life (not counting heart stuff), which is amazing in itself.

Thank you so much for praying for our precious girl! We would so appreciate you continuing to lift her up as we enter the new year.

PRAYER REQUESTS:
- For her heart to be healed
- For her to stay healthy through the rest of winter
- Thanks for her great year and happy spirit

And here are a few highlights since our last update:

Silly girls helping grandpa in the yard. Both
always eager to help.

SO EXCITED for the first snow!

"Unicorn Greatest Showman," Elsa, and cousin baby
bumblebee trick-or-treating.

Making a snowcat with their aunts.

"Come over here. Lets snuggle up."

Did I mention someone had a birthday?
After months of waiting, she was so happy
and excited all day. She kept asking, "Is it
still my birthday?" all day.

3 years old!!!

Both of her grandmas from Florida were
here for her birthday. 

My birthday is right after Ramona's, and my mom brought
them surprise me at work. What a treat!

From the photo booth at our family
traveling Christmas party.

All of my sisters and some of our kids!

Christmas morning! Much anticipated, thoroughly magical,
more than I could have hoped for. 💓

Ramona taking the cousin "babies" on a balmy
Christmas day walk, and trying so hard to
get them to look at the camera and smile.

Beautiful Christmas sunrise.
"A thrill of hope, the weary world rejoices."


Celebrating New Year's Eve with pre-dinner
ice cream.



I think I shared this verse recently, but here it is again. Praying that your year will be filled with the joy, peace, and hope found only in Jesus!

May the God of hope fill you with all 
joy and peace as you trust in him,
so that you may overflow with hope
by the power of the Holy Spirit.

Romans 15:13

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 -

AED in the House

I realized I didn't mention this in the last update, but we did get an AED (Automated External Defibrillator) for this kid. The insu...