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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.

Friday, September 23, 2016

The messiest man + Clawson side birthday celebration







 The sisters minus Jess.... 
Grams
Eden


MayLee


Ashy
Wells and Alex

Arlington

Papa and daddy
I am missing Marcus and Henning; Oh and Chaison and Jessica (and their puppies) couldn't make it. 
Dang it...












Official first day of preschool

"And I've sent her, and it is done, so I did do that".. Thanks Mayor Bellwether.. Perfect little thing to say. She is loving every minute and asks how many more sleeps until preschool.
She even got to bring in her mercan gurl doll "sweetie" with her the first day.


Ry turned twelve

My amazing, kind hearted, great helper daughter turned twelve... I was sad she got this old, for like 2.5 seconds. Then I realized, built in babysitter whoot whoot... Now, before I get hater mail... We have worked out a system. She isn't being abused as the sitter. She also gets rewards like a house to live in and food to eat. AND I never feel too bad buying her little extras if she has helped with the kids. See win win. She wanted such specific things this year. 12 years means she could finally add a little color to her hair. We decided to do a melt and she looks amazing. (Not hard when you are pretty cute to start with) she also gets to wear a bit of makeup. As in, a light shadow and some mascara. She wanted shoes for her birthday gift. It still makes me laugh that she asked for homemade Salsa and Wonton Salad. Loving herself some salsa!!!


And a mint chocolate cake!!!!

So yummy


Wednesday, September 21, 2016

LOTOJA is in the books

after months and months of training for Daddy and months and months of patiently cheering him on while he trains, Jeff accomplished LOTOJA. If you aren't sure what that is, that she okay I didn't know before either. It's a bike ride from Logan, Utah to Jackson Hole Wyoming. That is roughly 205 miles and over 7,000 feet of elevation gain. That is a dang lot of saddle time. While being a cyclist comes very easy to a lot of people, Jeff works really hard to earn those miles. He has overcome some health issues, changed eating habits, plus he has had been awesome at working the mind game. AND he met all three of his goals.. #1. To finish #2. To complete it in under 13 hours #3. To finish in under 12 hours riding time. I met my goals as his support and as his ride day support. Hurray for us!!
This is where it all starts. It's fun to come for packet pick up and see what the starting line looks like.
Shout out to JJ for being such a huge part of Jeff's training and motivation and support. 
This is how Jeff found me at each supported stop. 
Still smiling.. This was about 140 miles into it...
Oh yeah, driving alone... Singing LOUD and probably off key, but I think I sound phenomenal. 

I killed it as the support.

He did it!!!!!



Not a Lotoja virgin anymore!!!












Friday, September 9, 2016

Thursday, September 8, 2016

And number Free

In preparation for Ry's birthday we visited Peterson Family farm to pick up some salsa making supplies. Ry asked for homemade salsa the past two years. We got what we needed and the girls asked for a treat.. Nothing and I mean nothing is as yummy as a super juicy peach. And I quote, "this is better than candy" -Eden 
 We also hugged the baby goats, and played in the corn. 








I love how MayLee wants to tell me things like her sibs do.. It goes something like this.
"I have good news and bad news.
The bad news is.... I really don't like this apple.
And number free (three), I said, I don't like this apple."

Also Ashy boy got his stitches out today.. I took the before pictures, but failed to get an after. 

Add one more injury to his growing list. Yesterday we were walking, just walking, and he tripped over his very own feet and fell face first. Instead of catching himself with his hands, he caught himself with his lips. 






Tuesday, September 6, 2016

Alright stop already

Poor little baby boy. So full of energy and curiosity and life. Asher climbs on everything and runs instead of walk. He wants to be outside in the middle of the road and up on rocks and eating dirt. He also wants to be up in my business while I cook, clean, or really anything. Yesterday he followed me into my closet, I was kneeling to put away some clothes I had just folded, he tripped on my feet, we have a stack of cabinets with open fronts that is our shoe rack. Asher's head made contact with the lowest shelf and I knew it wasn't going to be good. He perfectly sliced open his head. While tape or steri strips probably would have worked in an older kid, Asher is so likely to pick and touch his wound, plus also he falls again and again and who knows if they could withstand more trama we went with stitches. 
Poor little guy. 
It actually doesn't look too bad in the photos. 

Today we had to change the bandage. That is NOT very fun. 

Because his little mouth was open yesterday from all the crying, I counted four new teeth about to rupture. We are going to need a lot of cool drinks and maybe some Tylenol..