Friday, January 26, 2018

Lots of things...

Always best to start with a cute picture, right? 😊

We had our appointment on December 21st to make sure we were all clear to fly to Florida after Christmas, and the verdict was good. Ramona's echo was still unchanged, and she was given the "thumbs up" to travel.

Sharing a cracker snack.

They love the waiting room toys.

She does great during her echos. She was getting a little squirmy this time,
so she watched Sing on my phone for the rest of the time and that did the trick.

We hit up Chick-fil-a for lunch and then did a little shopping. Both girls were pooped, and they both took a cart nap at the same time! Sa-weet.

Then, the very next stinkin' day, Ramona had a scary little episode while I was at work. She took a little tumble while walking, then, after crying for a moment, she nearly passed out, was blue around her lips, and was sluggish/snuggly/sad (to put it as simply as possible). That's scary no matter who you are. So, we ended up right back at the cardiologist. Our regular doctor was out of the office, so we saw another doctor that we hadn't met before (who was also great; we're so glad to have such a great congenital heart center so close to home). He was trying to determine if something had happened with her heart that caused her to fall and act like she did, or if she just fell and that triggered something with her heart. In the end, it was decided that the problem probably didn't originate with the heart (which is the better of the two possibilities), but it's hard to say for sure. 

Back at the doctor the very next day.

Pro tip: EKG stickers make excellent toys.

We were still given the "OK" to go to Florida, but this doctor said that it would probably be a good idea to get a loop record (a small monitor implanted under the skin on the chest) so that, if something like this happens again, we'll be able to see what was actually going on with her heart. He also said it might not be a bad idea to possibly consider a defibrillator implant. And the possibility of a transplant down the road was mentioned again, as well. He said that, if we're talking about a loop recorder and defibrillator for a barely-one-year-old, it's probably not a good sign for the heart over all. We have an appointment on February 1st to meet with an electrophysiologist (I think?) to talk about the loop recorder. They won't do any procedures that day, we'll just meet with the doctor who does them to learn about it and try to figure out if it's what we should do.

We had packed bags in case we had to stay overnight, but we were able to go home that day. And, even better, we were officially on Christmas break! Yay! We had a wonderful couple of days playing games, eating snacks, and spending time with family.

We woke up to snow on Christmas eve! This girl stood and stared out the window
quietly for a long time and then sighed "is it nice, mommy?" Yes, yes it is.

Christmas Eve service.

Ready for sledding on Christmas Eve!

Christmas day with Great Grandma and Grandpa

We headed home earlier than usual on Christmas so that we could pack the van and get to bed since we had to get up early the day after Christmas to head to Florida. We had spent almost a year planning a vacation to Disney World with Nathan's whole family. But, instead of packing the van when we got home that night, all of us except Ramona got sick with some sort of horrible stomach flu. My mom came and picked up Ramona so that, hopefully, she wouldn't get sick, and we had to cancel our trip a few short hours before we were supposed to be on our way. The one good thing was that, by God's provision, Ramona didn't get sick. Better all three of us than her.

Those bags aren't going anywhere.

We had packed an Anna costume for the Frozen sing-along.
She wore it around the house for 2 days instead. :)

Grandma Sheri is always thinking of us and picked up some fun souvenirs to send up to us, which was so much fun for the girls!

Minnie shoes!

Matching baby models.

We also finally heard back from the genetics office this week! If you recall, waaaaay back last year, Ramona's genetic testing turned up two abnormalities. One was a gene (which we named Gene) that was known to be associated with Hypertrophic Cardiomyopathy (HCM), and the other was probably nothing. They did genetic testing on the other three of us  months ago, and we finally got the results. All three of us were NEGATIVE for the Gene that is known to cause HCM. (YAY!) Even though Daisy's echo was fine back when they did it, it's a relief to know that we don't have to worry about HCM popping up in her down the road. They think Ramona is just the first one in the family to have it. Apparently genes just do what they want sometimes. They said that if we have any more kids, it would be very, very unlikely that we would have another one with this condition. It's equally unlikely that Daisy would pass it on to her kids. For the other unusual gene, Daisy and I both have that one, but they don't think it has anything to do with the heart condition. Just a harmless family oddity. They said it would be highly unlikely that she would have two genes that cause the same condition, which makes them even more sure that this second gene is unrelated. If research changes at some point and they suspect it could be a cause, they'll let us know. (In case you're interested, the gene related to her heart condition is PRKAG2.)

Finally, Ramona is officially on the move! She has started both crawling and booty-scooting, AND she has also started standing unassisted! She's even taken a couple of steps on her own! This is big news for her, and she is so excited to be able to go places. We've been extra cautious with her walking and standing since the scare we had before Christmas, so she hasn't been able to practice those as much as she would like. :)

Phew. I really need to start doing these updates more often so that it's not such a marathon of information.

Prayer requests:
- Please pray for our appointment on February 1 when we talk about the loop recorder implant
- Pray for wisdom for us and our doctors
- Thanks that the other 3 of us don't have the Gene!
- Pray for Ramona's heart to be healed
- Thanks that Ramona continues to do so well despite her heart

Thank you so much for continuing to follow Ramona's story and cover her in prayer. There is no reason for a kid with a heart like hers to be doing as well as she is other than by God's grace. He sure gives all of us a lot of grace that we don't deserve, and that, in turn, gives us hope. ❤

For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that no one can boast. Ephesians 2:8-9

Now look at these cuties one more time (or, you know, six more times): 

Chuck E Cheese!

Both girls love music time at BlastOff on Wednesday nights at church!
They especially love the Lighthouse and Superhero songs.

Heal me, Lord, and I will be healed;
save me and I will be saved,
for you are the one I praise.
Jeremiah 17:14

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...