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.


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: 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!

- 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. 😬


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

Test Results & Next Steps

  Sister snuggles! Ramona had her procedure/testing yesterday morning. She had to stay flat on her back for four hours following the cardiac...