Friday, June 15, 2018

One Year Ago


One year ago today we took Ramona to see a Cardiologist for the very first time. We expected to hear that her heart murmur was just a harmless little thing that she would outgrow, but instead we heard about irreparable muscle thickness, beta blockers, and heart transplants.

It seems like so long ago. On one hand, it's been a long, hard, tiring year. But, on the other hand, it's also been so much better than we could have hoped for. Mixed in with the scary, exhausting, and heartbreaking days have been many sweet, fun, and joyful ones we didn't expect to have. We count it a miracle that we have so many bright days and good memories to look back on from a year that could have been so much worse.
June 15, 2017
The day she was diagnosed and her
first night spent in the hospital.
We continue to pray every day for her precious heart to be healed, and we give thanks for each day that we have together. We know that God can heal her. We know that, whether He heals her or not, He is good.

Thank you, friends, for continuing to pray for our girl! Here are a song and poem that have been close to my heart. May they reiterate and refresh your hope as they have mine. 💗


"I Will Not"

I will not be discouraged,
Though many trials come and go.
I cannot see what’s coming next,
But here is what I know:

My Savior King goes with me,
Through every winding way.
Through every hill and valley,
He is faithful every day.

I will not be defeated,
When woeful forces pry,
And try to steal my peace, my joy,
And distract my weary eye.

Though I waver like the seasons,
My savior stays the same.
He holds my shoulders steady,
He gently calls my name.

I will not be downhearted,
When fear pounds at my door.
When worry pours down on my head,
His grace pours even more.

I didn’t earn His favor,
His kind and calming hand.
Yet, he comforts me and leads me;
He says, “Everything is planned.”

I will not be found hopeless,
When life is different than I thought,
When sickness, pain, uncertainty,
May seem to be my lot.

Though I may fall, or fear, or mourn,
That’s not how I’m defined.
Every time I start to slip,
God says, “Take heart, you’re mine.”

I will not be overtaken,
Though my journey may be long.
He hears me every time I call
When days and nights drag on.

My mighty God draws near to me,
He draws me to his chest.
When I feel I can’t go on,
He beckons me to rest.

No, I will not be discouraged,
But don’t think that’s due to me.
I’d never make it on my own,
My Savior carries me.

His patient love, renewing hope,
He meets me where I stand.
How can I be discouraged,
When my future’s in His hand?

So we fix our eyes not on what is seen, 
but on what is unseen, 
since what is seen is temporary, 
but what is unseen is eternal.
2 Corinthians 4:18

Friday, June 8, 2018

Looking Forward to a "Normal" Summer


Hi there! We've had a pretty quiet couple of months since our last update. The old saying is true, no news it good news! (Or it's at least not bad news.😊) We made it all the way to our scheduled appointment earlier this week without any scary events or extra appointments!

This was one of our longer visits with an echo and EKG, plus appointments with both the electrophysiologist and cardiologist. It's been a couple of months since our last visit, and Ramona got scared when we were getting ready for the echo, which hasn't happened before, so I ended up holding her on my lap and then she was fine. Daisy also dug a paci out of the diaper bag for her, and then climbed up to sit next to her while they watched Paw Patrol. She's such a sweet sister (most of the time 😉) and is always so eager to help, especially at appointments.

Pretending to be hamsters in cages. One is asleep.

She always gets weighed and measured before we see the doctors, and this time she stood on the big kid scale, which was very exciting for her. She looked so grown up! We met with the electrophysiologist first, and he said her Loop Recorder is still double-counting beats, so they adjusted the settings again. It's supposed to detect both high and low heart rates, but, because of the double-counting, it was recording all kinds of garbage that was basically making the device useless. Any readings that might actually matter would probably be trashed out to make room for the useless new information it was constantly recording. They ended up just turning off the settings for high heart rates all together. Based on past events, they're more concerned with her heart rate being too low rather than too high, anyway.

When that was done, we got an EKG, which Ramona started to get nervous about, but I was able to distract her by putting on her shoes. That girl loves her "hooos!" (And clothes. And hair clips. And necklaces. And anything else she can wear. 😆) They had a tasty goldfish cracker snack and played with toys and EKG stickers while we waited to see our regular cardiologist.

EKG

They like to be the doctors and put the stickers on me.

We had a good visit with the cardiologist (good for us, anyway!). Her heart rate is still staying down on it's own (yay!), and the doctor is happy with how well Ramona is doing and glad to hear that she's still basically acting normal. She is growing like a weed, loves to play, and has become an unstoppable walking/climbing/house-wrecking machine. While she's a sweet, friendly, happy girl, she's also developing quite the fiery little attitude, which I think will suit her well in the hand she's been dealt. Anyway, the doctor said that, as long as Ramona doesn't seem like her heart is racing and isn't acting odd, we should let her do normal activities this summer, which is welcome news! As you'll see below, both of these girls are already thoroughly enjoying summer, and we look forward to a lot more family fun during these warm months.

Even though we've known about her heart for almost a year, sometimes it still feels like it's hard to wrap our heads around her condition. We want to have a better understanding of her condition and realistic expectations for the future. I'm thankful that our doctor takes the time to explain things and help us get a better grasp on where we are. And, where we are is a very unusual place. We are so grateful for how well she is currently doing, but we also know that her condition is very serious. We were given some good information that helps us have a better perspective for just how severe and unusual the thickness of her heart is. I know we've said it before, but it just seems impossible that she is doing so well and is so active with a heart that is so grotesquely thick. Looking toward the future, we know that, at some point, things will probably change and drastic measures will probably have to be taken. We don't know if that will happen in days or in years, but, God has blessed her beyond what we could have hoped for so far, and He might continue to do so for a very long time. We thank Him every day that she is doing so well right now, and we know that it is by his grace that she continues to live as normally as she does.

We've got another echo and follow-up scheduled in two months. I think we'll just keep doing these appointments every couple of months until things start to change, so hopefully we'll be doing them for a very long time! 😊 We also hope that things go as smoothly for the next two months as they have for the last two. The girls know that they get a sticker after the appointment is over, and this time they both tried to march straight back into the reception area to help themselves. 😆

In other news, we set up a "Pray for Ramona" Facebook page: https://www.facebook.com/prayforramona/. I know that there are several people we don't personally know who are following Ramona's story and praying for her, and we wanted to make sure you have a good way to keep track of her and see updates. We'll take all the prayers we can get for this girl! I'll still post our updates here on the blog, but we'll always share them on the Facebook page, so if you follow that page you shouldn't miss anything, even if you aren't FB friends with us. Thank you so much for praying for our girl!

PRAYER REQUESTS:
- For an uneventful summer (heart-wise)
- That she can continue to play and live as normally as she is currently
- For her heart to be healed

Now enjoy two months worth of pictures. 😬



Peek-a-boo!

Mother's Day

Always so busy! She says random letters
when she draws, as if she's writing words.

Rocking in grandpa Mike's chair. 💗


😍

Gaming with daddy. 😆

We've got to do lots of painting while
it's nice enough to do it outside! 

Chef and Sous Chef. (They both their they're the Chef.)

Zoo day! This was Ramona's face when she
saw the tigers, which were huge and pretty
close to the fence. She kept asking for more!

Wallabies! Ramona wanted to hold them
soooo bad. She kept asking "Pease? Pease?"
(Dressed in matching outfits at Daisy's request.)
(We also had the pleasure of hearing daddy's
Australian accent the rest of the day. 😁) 

Daisy LOVES snakes. For real. (Why???)




We spend most of our pool time telling Ramona to
stop drinking the pool water. Case in point.

Daisy's finally pulling (pushing?) her
own weight around here.

In the playhouse.

Both of these girls LOVE puzzles and books.
Ramona can do this style of puzzle on her own,
and Daisy just conquered her first 24 piece solo.

"When God places a burden upon you,
he places his arms underneath you."
- Charles Haddon Spurgeon

"Praise be to the Lord, to God our Savior,
who daily bears our burdens."
Psalm 68:19

Friday, April 6, 2018

Loopy Loop Recorder


Hi! Just a quick update today. We had to make a trip back to the cardiologist this week because Ramona's Loop Recorder has been acting loopy. 😉 We didn't quite manage to hold off until our appointment in June, but 2 weeks certainly isn't our shortest run between visits, so we'll take it!

We got a call last week that her recorder had sent an automatic transmission (which means it automatically recorded activity within certain parameters programmed by the doctor, but we didn't observe anything that caused us to use her button to mark it and send it ourselves) that included 9 "events" during one day. For the one event they could read from the automatic transmission, they could see that it was double counting the beats, so it was saying her heart rate was 200 beats per minute when the doctor could see that it was really only 100. We sent a manual transmission so that they could see more of the data, and they confirmed that all of the readings were caused by the Loop Recorder being goofy, not by her heart doing anything it shouldn't.

That was a relief, but it still necessitated a trip to the office so they could try to reprogram the settings. The way this works is that they have a wand-type-thing that I hold against her chest right over the implanted Loop Recorder, and it basically works like Bluetooth and allows them to download extra data, monitor her heart in real-time, and adjust the settings. Easy peasy! What wasn't easy peasy was getting the settings to work how the doctor needed them to. He showed me how it was ticking off each heartbeat, but it was also ticking off places it thought it saw "beats" in between the actual beats. He's guessing that the ablation in Chicago altered how electricity moves through her heart in some way, which was causing it not to work with the current settings. He might have also mentioned that the way the Loop Recorder has moved a little from the original location might also be related, but I'm not sure if I'm remembering that correctly.

All of us girls waiting to see the doctor! Ramona was
SUPER excited to have her own chair to sit in and
didn't want to give it up when I had to hold her. 😊
And that sister back there was such a good helper
this day! She helped get things for Ramona and keep
her entertained while she had to sit still for
longer than she wanted to on my lap.

The tricky part was that if he changed the settings to get it to ignore what it was seeing as fake "beats," it was hard to program it in such a way that it wouldn't also ignore overly slow rhythms, which is a bigger concern with her than overly fast rhytms. He got it to where he thinks it's our best bet for it to work correctly, but he didn't seem super optimistic that it really would solve the problem. We're going to give it a couple of weeks and see how it goes.

Ramona seems to be doing great, though! She still hasn't had any observable "spells" like she's had in the past, and she hasn't had any auto-recordings that were actually trouble. She's becoming increasingly independent, adventurous, talkative, and mobile! She's sooooo close to just taking off walking. She's really getting very good at it, it just usually takes some kind of bribery to get her to actually go for it. Hmm, I guess maybe she's just getting smarter than us, too...

PRAYER REQUESTS:
- That her Loop Recorder will work correctly and catch any unhappy rhythms
- That there won't be any unhappy rhythms to be caught
- For her heart to be healed

And don't think that a short update means that there is a shortage of pictures...

Her face when she says "Cheese" and tries
to smile on purpose. 😂




Daddy coaching sister before an Easter egg hunt!
She kept saying "I'm fast! I'm so fast!" as
she ran to collect the eggs. 😂

This might have been one of the most fun
things she's ever done. 


Easter matchers!


"What's in your dress?"
"It's not a pillow, it's a baby."

Our egg hunt on Easter Sunday took place in
the snow! Both girls still loved it!

Daisy likes to take my picture, too, but her aim needs work.
I have to jump to wherever she's pointing the phone.

They loooove the playhouse at Grandpa and
Mimi's. It's fun to see them enjoy someting
I loved so much as a kid.

They both love their Aunts' chickens, too.

Her first ponytail! 😂

He heals the brokenhearted
and binds up their wounds.
Psalm 147:3

Thursday, March 22, 2018

Always waiting.

😍

We've been home for 2 weeks! Our time in the hospital felt MUCH longer than it actually was, and our time at home has, interestingly, felt the same. The beeping monitors, IVs, tests, and delicious (for real) cafeteria turkey burgers are starting to seem like a distant memory.

In case you haven't seen them yet, here are a few pictures of Ramona's homecoming! She was so excited to be home, and Daisy was so excited to have us back.


😘

My sisters made signs and hid balloons around the house,
which both girls loved.


Ramona has been doing great since we've been home and hasn't had anymore of her little episodes so far. She's really been on the move (maybe to compensate for being confined for so long?), and has had a couple little tumbles similar to the ones we think had triggered her episodes before, but they don't seem to be causing any problems for now. We're hopeful that stopping her beta blocker will keep those episodes at bay!

We had an appointment in Peoria on Monday to follow-up/recap on everything that had happened in Chicago. The electrophysiologist checked her Loop Recorder and it hadn't auto-recorded any unusual rhythms (yay!), and he talked a little bit about the EP study and corresponding ablation at Lurie. He also noticed that the device had moved a little bit from where it was originally placed, but that's okay. Overall, a good report! They'll continue to check for any auto-recorded transmissions once a month unless we observe anything out of the ordinary and have to push her button. Oh, the doctor also said that an ablation can change how an EKG looks, so they did a new one while we were there so that they would have a new base to compare future readings to.

She's an old pro when it comes to EKGs. Even though those
stickers are tempting, she lies so still and waits so patiently.

We also saw our regular cardiologist, and we went over what had happened and what our plan would be from here on out. While a beta blocker is usually how HCM is managed, she agreed that, in Ramona's case, the risks outweigh the benefits. We will keep her off of it for now and just continue to watch her closely. Her heart rate checked in at 87, which is pretty low for her age, so hopefully her body will continue to keep it down naturally. We'll also have regular check-ups so they can do echos and keep a close eye on her.

We got to see the whole gang there at the congenital heart center, and, let me tell you, it felt like Christmas. I just wanted to give everybody a great big hug. Don't get me wrong, we were thankful to have good doctors up in Chicago, too, but boy is it nice to be back with familiar faces that make us feel right at home. Ramona even gave Dr Albaro a big hug before we left. 😊

While we are SO HAPPY to be home and SO THANKFUL we didn't have to do any major procedures right now, we know that our journey certainly isn't over. We're back to going about our normal days for now, but we're always aware that things could change any minute. It's a blessing to be able to push these big scary things off to the side, but we can't help but remember that they could swing right back in and knock us off our feet at any moment. We've received a bandaid for her situation (which we're very thankful for), but now it feels like we're just waiting for that bandaid to peel off. Always waiting. I still check on her a few times each night because I'm afraid something will happen suddenly. My heart skips a beat every time she plops down, wondering if her heart will do the same. I'm always thinking about the next appointment and wondering if her echo will have changed. *sigh* It's exhausting, but at least we're home, she's happy, and we're all together. And we can hardly wait for the weather to warm up so we can finally play outside!!! 😊

Our next appointment isn't until June 5, which will be our new record if we make it that long! Please continue to keep Ramona in your prayers!

PRAYER REQUESTS:
- For her heart to continue to function as well as it is
- For her heart rate to continue stay low on it's own
- Thanks for her doctors/nurses/staff
- For us (me) to be able to relax/rest
- For her heart to be healed

And, of course, pictures! This time with a bonus video! (Warning: you're going to want to watch it like 14 times.) Daisy is alllll about the PJ Masks right now, and last night Ramona started watching it and copying Gekko. Go ahead, watch it. Both of these girls just keep getting funnier and funnier all the time. 💗


Lunch at our usual post-appointment place!
(Note the sassy nail color. I think it suits her.)

Napping in the tiniest cart.

She always needs to see what sister is up to.

💗

Tiny cone for Princess Anna.
And a bit for Sugar Baby, too. She was so excited/goofy
that I couldn't get a single picture that wasn't blurry.

Daisy always wants to do "projects" these days.
She spent almost an hour working on this project the other day.

Finished project. 😍


When I am afraid, I put my trust in you.
Psalm 56:3

But blessed is the one who trusts in the Lord,
    whose confidence is in him.
They will be like a tree planted by the water
    that sends out its roots by the stream.
It does not fear when heat comes;
    its leaves are always green.
It has no worries in a year of drought
    and never fails to bear fruit.
Jeremiah 17:7-8


One Year Ago

One year ago today we took Ramona to see a Cardiologist for the very first time. We expected to hear that her heart murmur was ju...