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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, 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.












































Wednesday, October 19, 2016

A short Gastroentrology appointment...

That is not a short word.Gastroenterology.... Did I even spell it right? Hahaha!!!! Gators tummy troubles and reoccurring C-diff was the topic today. We think we finally have a plan. It is such a relief to be moving forward when so many times we have issues that keep reoccurring. And it's almost Cath time. The big one, this is the one that checks his new healthy heart. Hopefully we can get these things wrapped up before the new year and we have to start over with our insurance deductible. Who am I kidding. Gator meets his deductible every year. We also ran over and found Miss Elizabeth. 
Eden snagged this blurry selfie

Speaking of Eden.. She was awarded the character award of Creativity in front of the whole school today. 




We are so proud of our shining kindergarten artsy girl.





Monday, October 17, 2016

Come and gone...

Time that is... Hold on to moments of joy, let worry and despair move quickly on its way...

We have been forging ahead, here at the Homie Homestead. 

Ry finished up her very first season of volleyball and was finally struck by the love bug. She thinks volleyball is great!!!! This is a sport she actually really really loves and wants to play and be part of. She wants to play again... Her team Sugar and Spikes did awesome. They went all the way to tournament against the oldest team 6th grade to 9th grade and lost by two points... They won the first game, lost the second, and lost in the end. Ry even pushed through an illness she was experiencing. 

Thanks Coach Lyon for being awesome and teaching her the ropes.

Eden is making flowers for Auntie Preslee. She made an entire bouquet. I took it up to her last night with Ry. Jeff stayed home with all the littles who aren't allowed back in the ICU. 
 Gator is our guitarist and I think we know what Ashy is going to want to do... Percussion!!!! 


Preschool filed trips are the BEST!!! We went to Gardner Village to see the witches. 
Thumbs up

There was so much to see....

Eden had her friend party! It was an Arty party and a huge success!! Having all of those little girls in one room was busy work for all the adults, but we managed and they all had a blast.
I didn't capture much of the fun because I was so busy running the show. And Jeff was so busy managing the short people, and Ry was my assistant and well.... We got about three photo's... 
First as the girls were coming we set up the Party Rocker...we played music and had lights, there were balloons to play in as well. Then we read some inspiring art books we got from the library. It was fun to see all the different kinds of art. Then we had pizza... I ordered the little aprons from Amazon prime on Saturday night, and we got a knock at the door during the party. They had arrived just in the nick of time. After we cleaned up pizza (I was surprised that some kids don't like pizza, but we were saved by the breadsticks) the girls each got a canvas with their initial. They were able to paint it however they wanted. They all turned out fantastic. We sugared them up with cake and ice cream, opened presents and then... Sent them on their merry ways... Thank you all so much for the wonderful and thoughtful gifts and friendships.

More to come.