Monday, July 3, 2017

A Good Checkup and a Wedding Weekend

Hi again! We had another trip to the cardiologist at the end of last week, and it was a good visit. We're still waiting for the genetic tests, but they did another echo on her heart and it was not any worse than the echo that was done 2 weeks earlier. We had no idea how quickly her heart might be changing, so it is good news that it didn't get visibly worse in that short time. Before the appointment, I was very worried that we would just have to stay in the hospital for good this time, and we are so thankful that we don't have to do that yet. We were also told that they definitely will NOT do any kind of surgery with her heart at its current state. Ramona is still acting normal and is getting enough oxygen right now, so they will wait until things change/get worse before they do anything. We were also very glad to hear this news. We don't know when things will change or if it will be a sudden or gradual change, but, at least for now, we have some indefinite, non-specific amount of time. Which we will gladly take. :) They said her diagnosis is very difficult, because they usually have a traceable family history where they can see a pattern of things happening around a certain age or at a certain rate, but we have no such reference for her.

Doing a little shopping before our appointment. 
Her medicine is doing its job and slowing her heart rate, which is good news, too. They were able to measure the force of the blood moving through her heart this time (they couldn't at the original appointment because it was going to fast), and it is in a good range (good for her, at least). Her heart isn't having to work as hard and the flow isn't as turbulent. The problem we're having is that Ramona has made it VERY clear that she does not like her medicine. She now starts spitting as soon as she sees the syringe before we even try to squirt the medicine in her mouth. It is a very frustrating battle that we have to fight every 8 hours. I know (or at least hope) she'll get used to it eventually, but right now it's exhausting and often ends with both of us crying. But we keep at it because we must. I think I probably just need to get a little more rest, too. We were able to shift her medicine times over the last few days, which will be very helpful in the sleep department. One of her doses was falling at 2:00 AM (😬), and we've now gotten it so that she has doses at 10:00 PM and 6:00 AM and nothing in the middle of the night. I think it will be much better for my sanity.

Another important thing we learned at this appointment is that a transplant might not be our only option. When we reach the point where something needs to be done, if the thickened (ugh. I hate that word now.) muscle is not obstructing a valve, it might be possible to do an open heart surgery and carve part of the muscle out rather than doing a transplant. It's still a major surgery and scary to think about, but, if it's a possibility when the time comes, it would be a better option than a transplant and have a better outlook afterwards. Like I said before, they aren't going to do anything at her current state, so we'll have to wait to see where/how/when things change before we make any plans. It was encouraging to hear that there is at least a chance we might have another option. I think I had been exhausting myself with worry leading up to this appointment, and I felt so much better after all of the things we learned that day. I napped real hard on the way home.

After her appointment, we spent the rest of the weekend in a whirlwind of excitement getting ready for my little sister's wedding! Ramona had a big role to get ready for: her debut as a flower girl! I don't think she took her job very seriously, though. She slept through most of the ceremony and one of the junior bridesmaids had to carry her in sound asleep.

Fluffy tulle baby wide awake after it was all over.
These dresses!!! My sister made them, and Daisy loooooved
her "princess dress."
Seriously, cutest wedding ever.
(picture from More Like Home)
It was so nice that the girls could be part of such a special day. I'll have to share some better pictures of their cloud-like fluffiness after I can get a hold of the official wedding pics. :) For now, we're still doing our regular activities, we just try to keep Ramona from getting too hot since she gets soooo sweaty. As of now, we're still planning for me to go to the LuLaRoe Convention in California later this month, but we'll have another trip to the Cardiologist on the 19th to make sure everything is still the same before we go. They'll send a bunch of medical information with us in case anything happens while we're gone, and we'll keep sweetie baby indoors to stay cool. Oh, and the "we" here is referring to myself and aunt Georgie, who is tagging along so I'm not by myself with Ramona. And for extra fun, of course :)

Also, I just want to say real quick, we really appreciate all of the help, extra thoughts, notes, etc that have come our way these last few weeks. We've received so many perfectly timed little bits of encouragement and rays of sunshine. Thank you for brightening our days and thinking of our littlest girl and our family.

Here are a few prayer requests we would appreciate you lifting up with us:
  - Healing for Ramona (spoiler alert: this one will always be on the list)
  - For Ramona to take her doggone medicine without us having to fight her every. single. time.
  - That we don't let worry and tension spoil our days
  - And, of course, thanksgiving that her condition hasn't worsened and that she still acts like a regular, happy baby

Thank you!

"Let them give thanks to the Lord for his unfailing love 
and his wonderful deeds for mankind, 
for he satisfies the thirsty 
and fills the hungry with good things." 
Psalm 107:8-9

1 comment:

Follow-up this month

Sorry for the radio silence the last last few weeks, but there hadn't been any new news to share. We spent the first half of May finishi...