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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, May 15, 2012

Heart Update and Jump and Bounce

Gator had a cardiology appointment last Monday. I love going to clinic at the Riverton location. It is so much closer to home. The first thing we did when we got there is had pictures (x-rays). Gator is so good for the girls, they always make comments about how easy he is and quick to do what they ask. Then Gator played video games while we waited to be called. It wasn't a very long wait and he was disappointed that he had to quit playing. Then we got a surprise!!!! Dr. Su wanted an echo. It had been a long time since he had had one. Gator was a little mad because the stickers that they put the leads on, are his most HATED thing about visits and he always wants to go home and take a bath to get them off. We had a great tech and she did a fantastic job talking him into putting them on and promising he could pick from the prize basket if he was good. He wasn't as good as x-rays but he did well for being surprised by the echo. I really try and tell him everything he will be expecting even if it hurts. He has his own way of dealing with it when he knows about the procedures. He was thrilled when he got to take off the stickers and they didn't even hurt. Then we talked with Dr. Su..... It seems like everything is doing really well. His Sats are not super high, that is a result of the fenestration. His tricuspid leakage has improved, a huge happy deal. I love to hear that things are improving. He hasn't had a serious illness since his endocarditis... Such a relief that he has stayed so healthy this winter. The only thing that isn't an improvement is the function or squeeze of his heart. In fact it may have gotten a little worse. That has been Gator though. He was on a medicine called Digoxin that was supposed to improve that some. I asked our doc if he thought the decrease in function had to do with stopping that med after the Fontan. There hasn't been any major proven facts that it helped in the first place. So we are not thinking that is it. We just watch and wait. With all this great news we don't have to go back for a YEAR! That seems so crazy. Our doc is always there if we need him but, we don't have to make an official appointment for a year.... WHOOO HOOOO!

So in the mean time...
We are gonna play hard!
For Gator's Pre-school, they go to Jump and Bounce for an end of year party. He kept asking how many hours until we were going. This kid needs to learn time, I tell ya!
So here we have Munchie trying out the slide...  
And Gator with blue lips from playing so hard.... I checked his Sats at the end.... 82.... This kid just wouldn't stop.
 
Here is wonderful Miss Joey, Issac and Gator all at the top of the big slide. Miss Joey promised Gator she would do the slide with him and she did not disappoint! 
Muchie loved it too... I thought she would want to just run around, she wanted to climb up the big stuff like all the other kids... 
Open shut them, open shut them, give a little clap clap clap, Open shut them, Open shut them, put them in your lap.... All the kids getting ready for snack! 
Checking out the fruit snacks.... but remember...."You get what you get and you don't throw a fit" 
Then we needed to come home and cool off... drinks from the sprinkler 
That is kinda tricky without getting soaked. 
It was fun trying anyway 
He also wanted to get a quick ride in... 
 
Munchie just wanted the water.... 
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2 comments:

Cynthia said...

Makes me happy to see you all simply enjoying 'normal'. Can you believe it? NORMAL! That wonderful, generic thing and it's all yours for the next year at least! The things that others take for granted are now yours to take for granted too (except I know you won't!) Congratulations to the whole family!

likeschocolate said...

Can you believe our little boys are growing up. So glad everything is going well for Gator man. Hugs from afar!