04/24/2026
We finally made it to cardiology this month! He unfortunately did come down with a cold last weekend, so we were not able to do sedation. But they said to bring him and we would try with nothing on board, and if we had to we could give something for anxiety. And we just get what we get. He did so good! We talked about it the day before and he told me very clearly he would not lay in a bed, but he would sit in a chair. So we "practiced" using the recliner. I asked the hospital to set his bed up like a chair for as much as the could, and they were able to do the whole thing that way. They got a portable DVD player out so they could make him look where they wanted. He sat there and gave us a play by play run down of the cars movie the whole time, not a single tear... Until they got to the arotic arch, which they look at in their neck. All kids hate it, so Boston wasn't alone. But he didn't freak out he just cried a little bit and told me he wanted to be done and go find Ellie.
Layla also had her one year post treatment appointment 🥳🎉. So Grandma, Layla and Ellie went to her appointment.
We got done with the echo and decided to do the EKG on that side as well. He lost it for that. He is weird about stickers, so I was not surprised. I've helped hook up an EKG on him a time or twenty, so they let me help.. so we had the nurse, the tech who came to do the EKG, and me, all hooking up as fast as we could. We got done and all 3 of us were unhooking just as fast. Then they bribed him with some snacks, a juice box and a hot wheel car.
We saw his cardiologist and everything looked great. She was so impressed how "normal" he seems. Usually by 4 kids are starting to show signs that they're ready for the next repair. Boston isn't yet. His o2 stats are staying strong, which also means his stent in his LPA also likely doesn't need intervention, which is also surprising. His coloring looks great. He has tons of energy, and can keep up with other kids. I thought for a brief second they were going to give us some more time before surgery, but no such luck. They still want to get him done before he starts showing signs he needs it. They usually do the surgery between the ages of 2-4. He will be 4 in June, so he's at the end of the range to begin with. She didn't want to push it farther.
The bad news is our surgeon left to go back to Dallas ðŸ˜ðŸ˜. I literally wanted to cry. I truly believe we may have had a different outcome with Boston had we not had Dr. Lehenbaur in there. Our cardiologist knows how we feel about him and offered to help us transfer to Dallas for him to do the surgery. It's a big decision, and AJ wasn't even there. So I told her I would need to get back to her. We have his personal number, and are planning to call him today to see his recommendation.. is there someone at Cincinnati he recommends, or does he feel its best for him to perform it. If I can't have him, his opinion is the second best thing, and I truly will feel comfortable with whatever he recommends. So we don't have answers yet, we don't have a date yet. But hopefully soon.
Now that Layla has hit one year in remission, her appointments will space out to every other month.
And because it's the season of being on the run all the time, we also had dance pictures last night. Layla and I came in right from Cincinnati. Wednesday night we went to dance before heading to Cincinnati, so I brought her costumes and left them in the office at the studio. We came back and went right to the studio and got ready there. Auburn rode with another dance family who lives close to us and met us there.
