Sunday, August 23, 2020

Happy Summer :)




Happy Summer! It's been a crazy but good few months. Ramona's appointment that was scheduled for the spring was postponed a few times due to Covid, but she finally had an in-person check up in June. She'd been doing really well, but I just like the peace of mind of seeing that her heart is doing as well as it seems to be from the outside. I was worried she would get scared at her appointment (she hadn't been to the doctor in 6 months due to postponed visits!), but it was no problem at all. 

Everything still looks the same, which always counts as a win in our book! She's definitely not a fan of the summer heat, and she'll tell us when she needs to rest or "get some air" (meaning air conditioning) when we're outside, so we were wondering if that was indicative of some kind of change, but thankfully it was not. It's probably just due to the fact that she's so much more active than she was when she was littler. She loves to run and climb! 

Ramona did everything "by herself" (not sitting on my lap) at her appointment this time. 😲 The nurse kindly used the manual blood pressure thingy (to use the medical term), which made this our first no-tears appointment in quite some time! Here are some pictures of this big brave girl:


Such a nice smile under that mask.

Aaand without the mask. 😂

This is the first time she hasn't
wanted to be on my lap during
an echo. She talked to the tech
the entire time. Mostly about
Frozen characters. 😂

No tears for the "squeezy!"

EKG = nothing new for this kid.

All in all, a great check-up! Ramona was super excited to see the doctor, whom she adores. Every time a door opened she would gasp and say "I think that's doctor Albaro!" 😂 Ramona still has her loop recorder to monitor for irregular heart rhythms, and we're going on almost 2.5 years of zero irregularities! Woo-hoo! Since she's been doing so well (and since we ended up having 6 months between the last two appointments anyway), we're going to try switching to appointments every 6 months instead of every 3, which means we don't go back until after Christmas! Of course, if we have any concerns or if anything comes up on her monitor we'll go in sooner, but here's hoping things continue to go as well as they have so far. 😊 

Here she is sending a transmission from her 
loop recorder. She can do this all by herself
now and loves it!

PRAYER REQUESTS:
- For Ramona to continue to thrive! She's having such a great summer (even though we're mostly just at home)
- For her heart to be healed
- For her (and all of us, and all of you!) to stay healthy!

Thank you!!!

PICTURES:
It's hard to sum up 6 months in a few pictures!

This is one of my favorites. She had
a chest x-ray done last year, and 
since then she's been giving her toys
x-rays. In this case, Rapunzel is
hanging by her hair and screaming
while she gets her picture taken. 
Which pretty well represents
Ramona's feelings about her 
own x-ray. 😂 It's interesting to see her
play through her own experiences!

The creepiest and most loved
snowman of 2020.

Buds 💗

Ramona was so excited to join
dance and tumbling when she turned
3, but, of course, everything was 
canceled due to Covid. She wasn't
too upset about it, though, because they
have been making their own classes
and shows several times a week.

At it again 😎

Mimi!

Sister had a birthday!

Family pic (because we hardly ever
take one all together!)

Daddy had a birthday, too!


The girls were able to get some swimming
lessons in this summer, which they loved! 💦




Give thanks to the Lord, for he is good;
    his love endures forever.
1 Chronicles 16:34

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

Happy Summer :)

Happy Summer! It's been a crazy but good few months. Ramona's appointment that was scheduled for the spring was postponed a few time...