Sleep study & more

Playing (I use that term loosely) her
tin whistle at Classical Conversations.

Hi there! I keep meaning to post an update with the results of all the things we were waiting for after my last post, and I've somehow let nearly a year slip by without turning those intentions into action. *facepalm* At long last, here you go!

This is from her sleep study. She gave
me a thumbs-up, but I don't think
she was feeling thumbs-up at all.

Ramona had her sleep study last spring. The study itself was...chaos? But, the results were just what we were praying for - no sleep apnea! Thank you God! Nathan stayed with Ramona for the overnight study since I had a nursing baby. Ramona did not enjoy having all of these sensors stuck all over her, and then they tried to put a sensor INSIDE each nostril. She was (understandably) having absolutely none of that. They tried to sneak them in after she was asleep, but that wasn't going to happen either. Nathan said she also woke up a couple of times and tried to rip all of the other sensors off. When he told me all of this the next morning, I was so worried we were going to have to do the whole crummy thing again, but, thankfully, they were able to get everything they needed. We are so thankful for only having to do this once and for the good results!

Another thumbs-up from her echo in
September. This is the easiest part.
It's also the part with cartoons.

With regard to her loop recorder, the battery in it ended up lasting until almost Christmas! Her nurse said that was the longest she had ever seen one last. We were so thankful that we had her loop recorder and that it enabled us to get to the bottom of the scary symptoms she was having (waaaay back when she was at Lurie's for her transplant evaluation). We're also thankful that, once those problems were resolved, nothing else concerning came up the rest of the time the device was working. We will need to get the loop recorder removed at some point, so we'll probably address that at her next appointment. 

Rapunzel in tow; waiting to see Dr. Albaro.

Speaking of appointments, at her appointment in September, her doctor said that we could try spacing out her appointments to every 6 months since she has been so stable for so long. We've always had appointments every 3 months until now. It's good to know that the doctor feels confident enough to space them out. Buuuuut it's been an adjustment for me, because it turns out I really like getting that regular confirmation that everything is still okay in there. 😅

Baby brother just had his first birthday and is positively bursting with energy and adventure. He had a couple of echoes and other testing done in the first couple of months after he was born, and they came back perfectly perfect, as we expected. He does not have the gene mutation Ramona has that is known to be tied to HCM, so we expected that his heart would be normal. Since Ramona's HCM was soooo severe at such a young age, the doctors suggested (and we agreed) it wouldn't hurt to be extra cautious and make sure everything was okay.

I *think* that ties up the loose ends from last time. 😊 She's had a great year all around. She got to be in her first dance recital, started homeschooling and attending Classical Conversation, and continues to love playing with her dollhouse toys and legos. 

Her next appointment is in March, and we're praying for another good report. Ramona has already adamantly (and loudly) told me that she is not going to her appointment because she is NEVER doing a squeezy (blood pressure) again. That was discouraging, because everything went SO WELL at her appointment in September. The nurse was wonderful, and Ramona (though she was nervous) didn't fight or cry at all when she took her BP. Ramona even acknowledged that it didn't hurt afterwards (which is what she's always afraid of). She was terrified of the blood pressure machine when she was little because it squeezed so tight, and, even though the nurses do her blood pressure manually now, we've just never been able to get past that fear. Even with good experiences like her most recent appointment. *sigh* She is such a brave girl and has done so many things that no kid should have to do. Please pray that she'll be able to get over this mental obstacle. She was so little when that originally happened that I don't think she remembers it actually hurting, but the fear from it left such a strong imprint on her. 

PRAYER REQUESTS:

- That Ramona will not be so scared of having her blood pressure taken (and that I know what to do to help her better)

- That her heart will be healed

- Thanks for good test results a great year!

And, of course, some extra pictures. I am what I am. 😊

At the playground last spring.

Super Kitty and Tooth Fairy Princess

She was SO excited to turn 5!

Easter bunnies with aunt Jill.

Sunset walk with a cousin.

We were thrilled to finally get to visit
grandma in Florida! And in January
to boot. What a treat!

Their summer dance recital. They 
both had such a good time.

We tried out a one-night family camping trip with 
a baby. It was surprisingly great!

She calls this her "beauty dress" and
has been wearing it nearly non-stop
since Christmas.

"My flesh and my heart may fail,

but God is the strenth of my heart and my portion forever."

-Psalm 73:26

"I believe that I will look upon the goodness of the Lord

in the land of the living."

- Psalm 27:13

Odds and Ends

Me: Smile for a picture!
My kids: *goofy pose*
😂

 Hi there! This update covers several odds and ends from the last few months, but the overall report is that Ramona is doing great. 😊 This update is also several weeks past due, but that's because we added a baby brother to our lineup in January!

The girls adore their baby brother, and he already seems to like
them an awful lot, too! They're such good helpers and love 
to take care of him.

Ramona had her heart appointment in January, and we're thankful to report that things are still stable for her. The wonderful nurse that keeps track of the readings from Ramona's loop recorder noted that she has been having some pauses in her heart rate when she's sleeping, but they aren't anything that would be considered dangerous (anything less that 3 seconds long isn't considered dangerous). It's considered normal for that to happen to anyone when they're sleeping, however, since she has the loop recorder, we can see that it has been happening to her more frequently, so she was referred to a pulmonologist just in case it could be an indication of sleep apnea. She doesn't have any other symptoms that would indicate that she has sleep apnea, so we're hopeful (and praying!) that she doesn't have it. She's scheduled for a sleep study next month to look into it. She is actually excited about it because her daddy will get to sleep there with her, and she gets to have a breakfast date with him the next morning. 😂

Thumbs up after her echo. 👍

No tears for her (manual) squeezy!

The other thing we talked about at her appointment is that her loop recorder is at the end of its 3 year life span. (I can't believe it's been 3 years already!) I get a lot of peace of mind between appointments from knowing they can sort of keep an eye on her from afar with the loop recorder, and her doctor shared the same sentiment, so it sounds like we'll probably be able replace it with a new one when the current one is removed. We've got an appointment with both her regular cardiologist and the electrophysiologist (who actually does those kinds of procedures) next month to discuss it more and make a plan.

In unrelated medical news, Ramona was having some foot problems that we were referred to a podiatrist for (this girl has more appointments and doctors than the rest of our family combined!). Thankfully, the issue was short lived and hopefully shouldn't be something we need to worry about in the future. The most notable part of that whole thing was that she had to get an x-ray of her foot. If you recall, she does NOT have good memories of her most recent chest x-ray, so I wasn't looking forward to this one. She ended up having a HUGE meltdown when it was time for the x-ray, even though I had bribed her with a cake-pop when she was done. I also bribed her with a toy when we couldn't even get her on the x-ray table (no apologies and no regrets - I do what I need to do for a scared girl with more appointments than a kid should have), and that did the trick. She was so brave and ended up being fascinated by the light and huge camera when she calmed down. The person doing the x-ray gave her a little teddy bear when she was done, and I asked her if we still needed to go to Walmart or if we could just get a cake pop since she had a nice new bear, and she chuckled and said "let's go to the store." 😂 

Brave x-ray girl.

Baby brother had an echo and extra sonograms before he was born to check out his heart (everything looked good), and he had his first post-birth echo in January. Everything still looks perfect, and he slept through the whole thing. He's having genetic testing done to see if we need to worry about anything popping up in the future, so we'll have an update on that later. 

So. Tiny. 😍

I think that's everything for now. Ramona is still happy, active, and hilarious, and both girls love having their brother around. 😊 Oh, and we just had the 3 year anniversary of when we were able to come home from Lurie Children's hospital! It's hard to believe it's been that long, and wonderful to look back at how great things have been for her since then. Such a blessed 3 years. We're so thankful for all of the time she's had to just be a kid, which is such a blessing given her condition.

PRAYER REQUESTS:

- Ramona to continue to thrive, and her heart to continue to do its job well

- Thanks for how well she has been doing for so long

- Continued wisdom and skill for her doctors & nurses (we're so thankful for them!)

- Planning and preparation for removing/replacing her loop recorder

- Her upcoming sleep study - both the study itself and the results (no sleep apnea!

- Thanks that her foot issue wasn't a major problem

- Peace of mind and good results regarding baby brother's heart

- Thanks for the blessing of a new baby!

Thank you for praying for our sweet Ramona and our family! We are thankful for you!

MORE PICTURES:

Somebody had a birthday!!!

She told me months in advance that she wanted a round cake with a smiley
face with eyelashes and curly hair, with her name on the side, and with green
and purple frosting and sprinkles. She stuck to her guns and loved her cake!

Eating lunch in the van, as has been the custom most of the last year.

This is random, but I was super excited to find the perfect backpack!
Our AED fits perfectly in the bottom compartment, and the separate
top compartment serves as out diaper bag! So much easier than multiple bags!
(from Walker Family Goods)

They got swimming lessons from an amazing teacher last summer.
Can't wait to do it again this year!

All dressed up for a family wedding. Five minutes into the ceremony
Ramona said "Uuugh! When are they going to KISS?!" She loves
weddings. 😂 P.S. Check out that handsome husband! 👀

Always picking flowers.

Picnic at the playground.

Halloween with a cat and a pirate with whiskers
(who insisted she was NOT a cat pirate).

Bringing back the side ponytail. She loves to get her hair done!

Traditional homemade pizzas on Christmas Eve!

Playing their new charades game on Christmas.

She's still allll about the playmobil people.

And she's still all about everything soft and snuggly.

Thankful for some nice days to play outside!

Yes, my soul, find rest in God;
   my hope comes from him.

Psalm 62:5

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