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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.

Sunday, November 20, 2016

First week off track a success!!!!

How we even survived ??? I pretty much don't even know. I think it's crazy to have the kids in school, then we go off track and jam pack our days and I realize crazy is a serious understatement.

Eden lost another tooth. She pulled it out herself. She was thrilled by her achievement.
The three oldest have been taking a cooking class. They are having so much fun. I appreciate that they are learning and enjoying food and cooking. Master Chef Junior here they come.







These Irises are completely confused. I tried to explain to them that it is November and not April. They kept blooming until the other day when we got our first snow and they thought holy moly it is really cold out here. 
Apperantly my kids loved the warm before the storm. Ashy would take his monster truck to the top of our driveway. It is such a steep drive that the kids love to push things down. We have our own sledding hill right in our front drive. It can also be called the driveway of death during snow storms.

Chalk drawing and no shoes. 

The monster truck was so awesome. Boys like girls have things that just make sense. My girls will pick up a baby doll, wrap it in a blanket and rock it. They love cars, trucks and balls. But it just made sense to them to be a little momma to those baby dolls. My boys can make all kinds of vehicular noises before they can speak full sentences. It makes sense to them. Ashy pushed this all over our circle. Sometimes the truck would move faster then Ashy legs and he would end up on his belly in the middle of the road. He would pop back up and start all over with his noise and pushing. He loves stuffed animals and littlest pet shops like his sister too.... But trucks make sense.
My new not-not-favorite trick. The STOOL... Asher has discovered a world above himself. With cups of water, buttons on the fridge, candy jars, markers, pens, purses, homework, decorations, and pretty much everything else in the world we don't want him to get to in the drawers and on the countertops. He finds a handy dandy stool for the kids in the bathroom or my kitchen stool and carries it around the house to a desired location. 

Wednesday was a success. The prep for a pediatric colonoscopy is long. I was mostly successful in doing the all clears diet with him for solidarity. We went to the store for slushies and ramen juice. Tough stuff ain't no deal for this guy. Alex woke up like a champ after his FMT. The nurses all wished they could have a whole day of kids like him. 
Ryleigh was invite to see the auther of Diary of a Whimpy Kid. She had so much fun. Thanks to our friend Angie for the tickets.


Ryleigh also has been doing Volleyball camp. We discovered a little French Bakery next door to the center where camp is. Her two awesome friends and Alex's friend are also French students and so this was a really fun treat.





I had to throw in this selfie of my Eden girl.

























Tuesday, October 25, 2016

The End of the season and other musings

The very last organized  bike ride of the season for Jeff, is the sunny St. George century tour.  The kids were out of school so we decided to make a family trip out of it. We drove late Thursday night so we would have all day Friday to play. The weather was fantastic, we didn't really have a plan and decided to meet up with some friends at Sand Hollow reservoir. It was crazy how bright orange the sand is. Without towels, swim suits, or anything else we improvised a bit, but had a complete riot. We found that orange sand in some very unexpected places. 














Jeff was slightly concerned AND slightly confident for his ride. Concerned because previous years he bonked because of cramping and illness. Confident because he has trained and climed more this past year and thought it would be easy to manage. He did amazing, finished this year no problem, but was surprised that it was still a mental game to climb so much elevation even with all the training under him. So way to go babe on your accomplishment, thanks for letting us all tag along too.



As we were waiting at the finish line the kids like to explore and play. In the little flower bed next to where we are sitting we saw these teeny tiny rocks the same color of the amazing dirt there.... My kids called them bacon bit rocks. Asher is happy to run all over and keeps me busy chasing after him. He actually sampled the bacon bit rocks and reported that they didn't taste as good as they looked, when he promptly spit them out.
Now that we are aware of the Awesomeness of Sand Hollow we will be more prepared next year....

This year PTA Reflections was a huge success for our family.
The theme was What's your story?
 We have been talking about this for a really long time. Last year we weren't able to put the effort into Reflections with Alex's liver surgery and recovery. So this year we wanted to make sure that we entered. Eden entered visual arts 2D a watercolor of a garden, A photograph and a poem for literature. All of Eden's work received award of excellence and she got three trophies and the chance to move onto regions. Alex entered visual arts 2D and received a ribbon for award of merit his painting was awesome. Ryleigh entered visual arts 2D, visual arts 3D, and photography, she received award of excellence on her VA pieces, those are both moving on and award of merit for her photography. 
Grandma Clawson works for Alyssa's bridal, the owner asked that Ry display her 3D piece in their store. Ry is over the moon excited. 
'Beauty unexpected bouquet' 
All items are recycled. It is hard to guess that the flowers are made from magazine pages, milk jugs, plastic cutlery, soda cans, the leaves are plastic grocery bags (ironed together) and a little bit of love.
'Beauty in the eye.
Watercolor on linen paper

I can't remember what she named her photograph

Alex's 
'Got Heart?'
Watercolor on linen paper. 

Eden's 
'The girls paint'
'Eden's garden'
Watercolor on card stock
I didn't grab a photo of her poem. Darn it... 



All the sudden Halloween was upon us.
This baby boy is very smart and learned to sign CANDY and PLEASE and I was eager for him to use them so I let him have a little treat... It's soooooo cute.
This is the only picture of Ash in his costume... I am busting it out to get a real picture for sure. He went as a monkey.
Eden went as Apple White from Ever After High.
MayLee is the Dark Queen. She did amazing at the Halloween Preschool party.

Alex liked this Abducted by an alien costume and even won an award at the ward Trunk or Treat. But this was a tricky costume to trick or treat in so he went as Grim Reaper for Halloween night.
Ry and Bella are Mario and Luigi.. 
Things were so crazy that we didn't even have a chance to carve our pumpkins, but they are still sitting out front. I am pretty sure it's taboo to carve them late, we are going to do it anyway.

What do we do with left over glow sticks??? Have a totally rad glow stick bath.... When the others saw these photos they all wanted the same.. 


Ry saved the day. We couldn't turn off the water because some short people (who shall remain nameless) dropped rocks and sticks down the little hole. 
Lucky for us, a PVC pipe,  a little duct tape, some extremely slow and steady hands fixed the issue.

We decided that MOST sauce is exceptional. We already knew that Chic-fil-a sauces were a notch above, however, we sure do like pretty much ever sauce there is... 

The kids are tracking off today so we should be busy with lots of stories of activities and busy life things.