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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, August 30, 2016

For reals

This conversation actually happened. For REALS!!!! 
May comes running into the living room today, on this lovely Sunday afternoon, I am reading in the big chair.  
May- Mom, I just went into the bathroom and there is poos everywhere.. 
Mom- what? How did that happen?? 
May- I don't even know?
Mom- like you just went and now you need help?
May- No, it's on the floor mom

I cringe at the thought, but go to investigate..

Remember in Daddy Daycare when the little boy says "I missed" and then they go peek in the bathroom and the Phsyco music plays and the guy even looks up at the ceiling and wonders and is grossed out.. Yeah.. We totally had that at our house.. 

I wonder where exactly it all came from and how it could possibly be in the places it was.. 

Happy Sabbath everyone! 

Normal boy things..

Alex not feeling well always sends me into panic mode. So even when it's normal boy things, like falling off your bike, I can feel my heart start beating a little faster while I weigh all options and simultaneously try and soothe him. 
Lucky for me, Ry has had this exact same injury and I knew he would be alright. 
He was riding his bike without holding on and lost control... 
He is smart enough to wear a helmet, or maybe it's the fear of my wrath if he doesn't.. So his noggin was protected, his cheek took most of the beating and a little on his elbow. 
He went to the dentist today, that turned out to be kind of nice because Dr. Colton checked out his cheek to make sure he was okay. BONUS!!! No cavities and his permanent tooth was coming up and they were able to remove his spacer. 

And double bonus was his braces didn't cause too much damage in the accident.. They just chewed up the inside of his cheek a little. His lashes are still wet from the pain leaking out of them. 

Here is Ry's cheek injury.. 
She also fell off her bike. She too was wearing a helmet. 
Alex's seems like it pokes out more. Poor kids.. 






Tuesday, August 23, 2016

Some days we just go with it.

I just love our little piece of heaven. It's about as crazy over here, as the next guy. Maybe, just maybe, dare I say a bit more crazy.
Take for example: Gator 
He recently fit himself into his baby brothers shorts. Quite the event for a nine  year old boy to fit into 24 month size shorts. 
But here is the proof it's not impossible. 
His tiny bum fits in small clothes anyway. He, wearing 5t pants as his usual. So maybe I shouldn't be surprised by this. 
Back view

Or getting out so we aren't stir-crazy. A Sunday walk/scoot. Gator was the only smart one with a helmet. I need to get after the girls to remember theirs too.
And some crazy fun..



More crazy fun, this time at the Lehi fun center with some of our crazy sweet friends.. 









Then we ran around like craziness at the IHH heart walk/Potter run. I took a whole two photos because I was so busy trying to help at then license plate table. But we had a great time. 

Good thing for friends who take photos..
I just love these heart boys. They all have heart defects and have grown up together, fighting.. 
Here is a little crazy clean.. 

Last is the BIG crazy... 
Which I am:) 






















Monday, August 15, 2016

I blinked..

I just barely feel successful for getting a post up, then four weeks pass by.. 

Eden started Kindergarten. She loves it, she loves Mrs. Mac, she loves the rules, she has so many stories to tell me when she gets home. I stand there amazed that she loves school. I am giving all the credit to Miss Joey her preschool teacher, who prepares each of my kids so well and makes learning fun, when kinder rolls around they are so excited to be scholastically fed they are bursting.... Eden isn't the very very best at everything yet, but we are practicing at home and loving it is half the battle. I just tell her everyday that she is so lucky she gets to go and that I can't wait to hear all about it, I thought she might 'need' me more, but nope! 
Shout out to Bobbi for letting us borrow your sign.. 

We love when the Tour of Utah comes to town. This year it came almost to our front yard. We stood on Mountain View corridor and cheered on the circuit.. Then  Jeff and I volunteered at the Bountiful leg. We brought all the kids to help cheer and see how awesome it was. Next year we would love to see a finish line.. 



Eden powered smoothy maker

This guy just had a birthday!! 
Jeff has put in a ton of hours on his bike preparing and training... He even did Hotter Than Heck. A ride he doesn't love that much... But this year it was a pretty great ride, everything except the bugs. 

Mr. Smarty pants figured out how to unlatch the child gate at the top of the stairs.. Even with me rigging it closed with a rubber band and a carabiner he figured out how to pull the rubber band hard enough to bust it. So I spent nearly an entire day sitting on the stairs while he practiced going up and down a million and forty nine times. I didn't get much accomplished that day other then making sure he didn't tumble down the stairs.



Clearly, I need to let her style her hair more. 
Well sisters sort of think alike because a couple of days later Eden also did her own hair. 



The crazy doesn't stop there... Alex fit himself into a pair of Asher's shorts. We had to peel them off.. 

To top it all off, we tracked off..Hurray for summer part B..