Tuesday, July 25, 2017

A Lesson from Steak 'N Shake

Hello again! We had another trip to the cardiologist last week. Ramona and I are heading to California tomorrow for the LuLaRoe convention (which I'm equal parts excited and nervous about), and they wanted to check and make sure she is still okay to travel. Our quick check ended up being a long day, but my Mom was along to keep us company since Nathan couldn't get off work. Thanks, mom!

We arrived early for our appointment, and when we tried to check-in they couldn't find us on the schedule. I looked it up, and they had told us to come that day, so they said they could see us anyway. Phew. (Side note, hopefully you never have to visit the congenital heart center, but if you do you will be very well cared for! We are very grateful to have such a good place to take Ramona and to have such wonderful nurses and doctors.) We were just seeing a nurse practitioner this time instead of our regular cardiologist, and we had to wait for her to be available since they forgot we were coming. The NP took her blood pressure 2 or 3 times, and it was high, which they didn't like. She also asked about her wet diapers, and it's a good thing mom was there to answer it, because I didn't realize she was having fewer wet diapers during the day. I also told her that Ramona has started sweating again (she was hardly sweating at all when she first started taking her medicine). Between all of those things, the NP wanted to call our cardiologist to come in and see us.

She gets the sweatiest when she eats and sleeps, so we put an extra towel or blanket under her at night
so we don't have to wash the sheets every day.

When the cardiologist arrived, she checked Ramona's blood pressure again and got a good reading this time. She was still a little concerned about the other issues and said she was probably just being over-cautious, but she wanted to do another echo while we there just to make sure. She's only seen Ramona twice, so she's still getting to know her and the anatomy and behavior of her heart. We weren't expecting to do an echo today, so we weren't on the schedule (though I guess we wouldn't have been on the schedule this particular day anyway...), so we had to wait a while until they could squeeze us in.

She napped hard while we waited for an echo. Next time I'll let her hold me so I can nap. :)

It worked out well that she had time for a nap at this point. She would have been
soooo grumpy during her echo otherwise. And I got to smother this squishy face in kisses
without getting poked in the eye or anything!

All of the waiting makes for a long day, but I'm am totally fine with waiting and being over-cautious for her. I'm just glad they were able to get us in. Ramona has done such a good job for all of her echos so far. I think it helps that she hates lying on her stomach, so she never tries to roll all the way over. It was funny that she kept watching what was going on this time.

Is there an echo in here?

We waited to see the nurse practitioner again, and she said that Ramona's heart is still the same, which is still good news for us. They gave us the green light for our trip next week with instructions to keep her hydrated, out of excessive heat (we wouldn't be able to tell if she's sweating just from the heat or if she's having trouble with her heart), and to increase the dose of her medicine to help with the symptoms we were noticing.

We had a laaate lunch (at Chick-fil-a, of course), ran an errand, and then swung through the Steak 'N Shake drive thru to get a happy hour treat for the trip home. I ordered a dark chocolate shake (one of my favorite desserts on the entire planet) and mom ordered a Coke Zero (one of her favorite things on the entire planet, second only to her second born daughter [moi]). We should have tried them before we drove away, because mine turned out to be a peanut butter chocolate shake and mom's was an unsweetened tea. So, not as much of a treat as we had hoped. But boy am I glad that was our biggest disappointment of the day! I think they were just trying to remind us that it's okay to double check and be cautious. ;)

We're working on "going on as normal," but also trying to make time for special things in case we can't do as much later. We took a fun family trip to St. Louis to go to the zoo, the science center, and a baseball game. Here are some pictures because these girls are too cute:

Here are the girls at the zoo with a big hairy giant! And a gorilla statue.

We tried to get a picture with a giant hippo, but it was too crowded. Also, they're not
as cute as I expected, so I'm not real torn up about it.

Leaf Cutter Ants. AMAZING.
We didn't stay very long, because it was hotter than we hoped. Except the penguin house, which
we though would be nice and refreshing, but it just made both sisters cry because it
was too cold. We still had a fun day, though! 

At the Science Center, this guy was scary until we told Daisy it was just a toy.

I think the dino toys were Ramona's favorite part. Daisy is holding a fossil of dino poop,
which she thought was pretty funny. 

Hotel buddies.

Nathan is NOT a Cardinals fan, but when in Rome...

Daisy took a selfie. 😍

She has sooo much fun bouncing to the music and watching the fireworks,
but she fell asleep for the last few innings. Both sisters slept until 8:30 the next day.
That's when we knew this really was a magical weekend.

And that's why you always (never?) travel with stickers.
And a couple random ones:

Fun at Great Grandma's on the 4th of July.
Visiting Grandpa. 

We're so thankful that Ramona is still holding steady, and we hope that continues for a long time. Thank you so much for continuing to pray for her (and all of us). We know that our prayers are being heard!

With that being said, PLEASE continue to lift her in prayer. We have several things you can pray for right now:

- That Ramona will take her medicine
- That Ramona will take her medicine
- That Ramona will take her medicine
- That Ramona will take her medicine
- That Ramona will take her medicine

*Sigh* We're still battling on the medicine front. And, with her increased dose, there's even more to fun to be had. :) Okay, here's a list for real:

- That Ramona will learn to like (or at least tolerate/get used to the routine of) taking her medicine.
- That I don't lose my marbles trying to give her medicine.
- That her medicine will do it's job and we'll see fewer symptoms as a result.
- Thanks that she still hasn't gotten worse.
- That her heart will be healed.

Cast all your anxiety on him, 
because he cares for you.
1 Peter 5:7


  1. Continuing to pray for healing in Ramona and for rest and strength in everyone!

  2. Still praying! Especially for Ramona to take her medicine!!!! ;)

  3. Thanks so much for the wonderful update! So good to see you enjoying life with those babies! Prayers for all of you but especially Nona! Love and hugs!

  4. I'm praying for that sweet, squishy baby girl. Know that you guys have love, prayers and support of so many people!

  5. Thanks for being so transparent as you go through this stressful time. Thanks for specific prayer requests as Judy and I continue to join you in praying for her healing


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