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.

- 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!

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

Sunday, February 17, 2019

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.

- 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.


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

Thursday, December 13, 2018

2 Years Old!

"It's My Birthday"

This big girl turned two last week! I can't believe how fast she is growing up! I've got all sorts of cute pictures to show off, but I'm going to save the good stuff for the end and take care of the more serious business first.

We had another heart check-up complete with echo and EKG, and Ramona is officially NOT a fan. The older she gets, the more nervous she is about the doctor's office, especially the echos. She's been nervous about the echo the last two times we've had them, but this time she completely flipped out. We're talking HYSTERICAL screaming and crying while trying to leap off of my lap. This girl is a typical 2 year old, so she's got tantrums down to a science, but I've never seen her like this before. We finally got her semi-calmed down when we dug an old paci out of the diaper bag (she usually only gets one at bedtime), and after a few more tears she calmed down enough to do some snap chats and then settled in to play with her PJ Masks while the technician finished the echo. *phew*

We're late to the land of the Snap-Chats,
but this girl loves a funny face!

Her heart anatomy and function are pretty similar to what they have been so far, which we consider to be good news. We're thankful that we haven't lost any ground and that her heart is still hanging in there. She is also still happy, active, and growing like a weed, which are positive notes, as well. She still has her loop recorder implant, and it has been clear again this month with no irregular transmissions. As long as she continues to do this well, we'll keep going back every 2-3 months for an echo and check-up to keep an eye out for any changes. And, of course, we're always keeping a close eye on her for any behavior/habits/patterns that are outside the norm. Our next echo is scheduled for mid-February, and we've been given the "okay" to do some traveling during Christmas break, so we're all pretty excited about that!

Playing while we waited to see the doctor after her echo.
She's also rocking her new medical alert bracelet.

Birthday bear! Aaaand everything else
she can carry. 😂
Ramona ended her appointment on a much better note than she started it. But, who wouldn't be cheered up by crackers, stickers, and a birthday bear? Another thing that helped is that Daisy is such a sweet girl and a good helper at our appointments. Besides helping get toys and stuff for Ramona, she also stands on the scale and gets measured first so that Ramona won't be scared to do those things. And plays hide and seek with her while we're waiting in the exam room. And offers to hold her hand. 💖

That's basically it for our current status, but I also want to clear up a little confusion about about her hospital stay in Chicago earlier this year. We've had several people comment that they are glad she is all better, and it's been a common misconception that the cardiac cath and ablation that were done in Chicago fixed her heart. While we're thrilled with how well she is doing right now, she still has a very, very thick heart. The ablation was done to potentially help decrease her chance of cardiac arrest from a "short circut" in her heart, but it was not something that would change or improve the anatomy of her heart. It is true that she hasn't had any more fainting spells since we came home from Chicago, but we think those were caused by an issue with her beta blocker, which was resolved when she stopped taking that medication. None of these things have fixed (or can fix) her heart, but maybe they will serve to extend and improve her life. There is no cure for the disease that she has, but, for now, she is thriving anyway.

Every time we have an appointment, it's a relief to know that things haven't gotten worse, but it's also sobering to think about that gravity of what's inside that tiny little body. It's hard not to be fearful of the future, but we also can't forget that God has been so good to her all of her life.

Thank you for your diligent prayers for Ramona and our family. I know it can become wearisome to pray the same prayer day in and day out, and we deeply appreciate the commitment you have to lifting her up.

- For her heart to be healed
- For her to continue to grow and thrive
- For us to know how to help and comfort her when she's scared
- For a safe Christmas season
- Thanks that she is so happy, active, and silly

Droppin' that change in the RMHC box.
You should do it, too!


Baby caterpillar

Baby frogs

Petting butterflies! Or so we thought. It turns
out Ramona was petting bumblebees. Like,
actually petting them. 😳

She loves babies!

First time trying s'mores! Ramona couldn't get past the
stickiness and gave hers to daddy, but sister loved it!

Finger painting!


They always love a visit from Grandma Cupcake!

We spent the night at a hotel just for fun a
few weeks ago. These girls love the water.

Taking our lunch orders and writing them
in their little notebooks. You always
have to order fries. 😂


Halloween: Owlette and Anna!

Birthday girl!

She loves to be silly and make people laugh.

We celebrated our 5th anniversary!

YOLO. (Do people still say that?)

 "He has made everything beautiful in its time. 
He has also set eternity in the human heart;
yet no one can fathom what God has done 
from beginning to end.
Ephesians 3:11

"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 ...