We went for Lydia's annual check up at the heart center today. She did SO good! She never cried once and was still on the echocardiogram (ultrasound on the heart) table the whole time. Tobias on the other hand was a bulldozer in the playarea and slammed riding toy cars into walls, pulled the megablocks castle down and tried tp explore the garbage can... (what is it with that boy and garbage??). 
I'm starting to wonder how difficult he will make our lives for us on our trip... 
When we got to talk to the cardiologist (finally, after being there close to 2 1/2 hours) he had both good and sort of bad news. For now the repair and heart function is good. There is a moderate chance (50-50?) that they might have to do something in the future if the scar tissue on her aortic graft starts narrowing the aorta. Most likely that would only involve a heart catheterization (a thin wire inserted into an arterie in the groin and then all the way up into the heart), but if that failed, another heart surgery would be necessary... But a small chance of that, thankfully. The bad new is that the pressures in her lungs are still above normal and one part of her heart is enlarged. This will most likely never change. So Lydia will probably never be able to do a lot of sports or run really fast. But we are just so thankful that everything seems to be good with her heart for now!
It was almost a relief when he explained about her lungs to me because she keeps getting these bad chest infections (think low sats and oxygen and hospitalization) and we thought that the pressures were fine so there was no good explanation. Her pedi had thought maybe she had asthma but when the meds didn't help at all it was clear that that's not what was causing it. Now we at least understand why she gets sick like that. I asked the cardiologist (not sure why I didn't think to ask before, but I guess last year all we really cared about was that she would live) if she'd be able to have children, and he was hopeful that she could (yay!!
) but she would be considered high risk and have to be closely followed by a cardiologist throughout her pregnancy.
So, that was the news for the day. I'll try to get another update up tomorrow.
I'm starting to wonder how difficult he will make our lives for us on our trip... When we got to talk to the cardiologist (finally, after being there close to 2 1/2 hours) he had both good and sort of bad news. For now the repair and heart function is good. There is a moderate chance (50-50?) that they might have to do something in the future if the scar tissue on her aortic graft starts narrowing the aorta. Most likely that would only involve a heart catheterization (a thin wire inserted into an arterie in the groin and then all the way up into the heart), but if that failed, another heart surgery would be necessary... But a small chance of that, thankfully. The bad new is that the pressures in her lungs are still above normal and one part of her heart is enlarged. This will most likely never change. So Lydia will probably never be able to do a lot of sports or run really fast. But we are just so thankful that everything seems to be good with her heart for now!
It was almost a relief when he explained about her lungs to me because she keeps getting these bad chest infections (think low sats and oxygen and hospitalization) and we thought that the pressures were fine so there was no good explanation. Her pedi had thought maybe she had asthma but when the meds didn't help at all it was clear that that's not what was causing it. Now we at least understand why she gets sick like that. I asked the cardiologist (not sure why I didn't think to ask before, but I guess last year all we really cared about was that she would live) if she'd be able to have children, and he was hopeful that she could (yay!! ) but she would be considered high risk and have to be closely followed by a cardiologist throughout her pregnancy. So, that was the news for the day.
I'll try to get another update up tomorrow. 
don't ya love happy news??? I'm so glad that things turned out well. Kids are amazing!
for a lifetime of good health and happiness! She's such a little cutie! My sister was very, very sick when we were kids, she had a brain tumor. I was little at the time, 3 or 4, but I know it was terrible hard on my her and parents. Now she's perfectly healthy, with 3 kids and a beautiful life! I wish the same for Lydia! 
I have my kitchen garbage can in the one side of our double sink because otherwise Ryan takes the garbage out! He's even tried to eat things! 
I can get over him eating dog food from time to time, but garbage!?! NO WAY! 
Tobias eats out of the garbage can every chance he gets!!!!!!!! 
We now keep our garbage can on the stairs behind the baby gate. 
They were dancing and singing and sometimes just in awe. 
I didn't even think to bring a camera, so no pictures. Sorry!! 
The show was lots of fun and quite professional, too. I'm not sure we would have paid the full price for the tickets though if we hadn't gotten them for free, they're quite expensive (!!!) and we had an hour drive to get there. But I'm really happy we went, we had so much fun! Even DH liked it and it takes alot to impress him. 
I think it was a good training for the shows at Disney and it was nice to see that she enjoys them and doesn't get too scared. The volume was REALLY loud here too, so I think it prepared her a bit for the "real" thing. 
I am quite happy with it, it's so soft. But it's probably the easiest thing in the whole wide world to sew!!! 
Tobias was SO offended that we left without him! 
He was SCREAMING!! 
