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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.

Thursday, September 27, 2018

First days of school

 Miss Eden is in 2nd Grade

 Gator man is in 5th Grade




Miss MayLee is in Kindergarten






Cousins in town


 We love our Grace and GG!! Ryan and Lisha are pretty great too.

Black ridge and Costa Vida
 MayLee and GG

















Wednesday, September 26, 2018

bit of random photos

This is what it looks like to follow my rider on a night ride up to Copperton. Sometimes the only time to ride is at 10:00 at night. But you have to get your training in. So I drive my van with the hazards on and make sure he doesn't hit deer, and drivers don't hit him. It's actually a very nice view of his hind end in spandex. he he!

 Asher caught the guarder at a wedding...

 Just getting some diving in...


I pretty much love bulgogi soon much. It looked so pretty that I had to take a quick photo of my creation before I scarfed it up.







Filming

 Alex was asked to be part of a commercial opportunity for Intermountain Health Care. We love any opportunity to spread Congenital Heart Defect Awareness and also to tell those who have done so much for our family, thank you. So it was easy to jump at this opportunity. Alex was also able to invite some of his friends to be in the filming. A huge thanks to Tyson Bates and William and Sterling Davies. (And their Momma's and Siblings for helping out too...) And another Huge thanks to Ninja and his sister. For being instant friends and super cool.

This was bigger than the other things he has done in the past. I confess, I actually didn't understand how big it was. I thought it might be viewed on TV after the news every now and then. I don't think I would have said yes for me to be in it. I don't usually like seeing myself fumble with my words. The filming crew and the all of the other elements of filming were absolutely fascinating. They needed a whole box truck to move around the cameras and gear. We learned there is a neat job (my favorite) called Kraft Services. They brought all the snacks, I wish I would have gotten a close up of the table and all the goodies on the table. It was amazing.

 There was a person in charge of how the boys looked but also that they had all the right gear and props. When we first got there, we forgot knee and elbow pads. We did remember helmets. So they ran right out and purchased pads for all the boys.




 Ryleigh is always a trouper, the little girls go off and play, and Asher brought his bike and I tried to keep him out of filming shots.


 They even used a drone and a fish tank aquarium for some shots. They placed the camera in the fish tank to take underwater footage. I was so impressed. We were so busy at the next location, I wasn't able to get anymore pictures. Annnnnnnd my phone died.
 We have had such an overwhelming response to the commercial. We have also heard from some very neat heart families, who have seen the commercial and contacted me to let me know they connect with us.

All of this is possible because of Julie. Her strong little heart has given Alex so much.


Now that Alex has a commercial under his belt, he wants to try out more film. I have no idea where to start helping him get into show business. Hahahaha!!! 

If you haven't seen it, would like to, and can't find it...

here is the link:

The amazing doctor featured is Doctor Molina!!! She is just one of the amazing people whom we love so much and are so thankful for. The kids and Jeff are in a quick clip in the back. I have never seen anyone flip burgers as awesome as Jeff!!!
He should be in show business too!




Daddy-o

 I pretty much think my kids have the coolest daddy. After church meetings on Wednesday night, he took a few minutes to ride the long board with the kids.
 I don't know what it's called in all places, but I am pretty sure most places or states have a type of NPS, a store that has things that have been damaged in shipping or the packaging, so they send them here. It is the most random collection of items. Jeff usually hates places like this, he loves order, there is absolutely no order here. On a visit there one day, he found a pool for the kids. It was a steal for the vinyl pool, cover, pump, and ladder. You would have thought the kids were in heaven. They spent hours and hours everyday swimming. I got creative in how I did my own chores, so I could be outside watching them while they were in the pool.



Trek 2018


 those are killer polyester trek pants....

 From My journal-
I am still very dirty and rather stinky as I write this. 
I have never been on a Mormon Pioneer Trek reenactment. And though I was very excited, I was also hesitant, because I have read so many stories of hardship. Purposely putting myself in those situations was a little daunting. Plus also, no running water (technically the water ran right past me in a little river) but nothing piped to me.
 The temps would be high at 95 degrees durning the day and low sixties sometimes fifties at night, and the filth was worrisome for my OCD tendencies. 
There is a real live thing called a dirt tan, even if no one else calls it that.
 But we got to our base camp sight, with beautiful country surrounding us and secluding us from modern life. Cell service was out, no electricity and no fires because of dry conditions, no flushing potties and no running water as mentioned before. So while the men unloaded gear, the women set up tents and the “mess hall” area. The youth and those traveling on the bus began their trek into camp. 
The work made us sweaty, then the dust we kicked up from moving gear stuck to the sweat. The trekking was the authentic experience.. 

All in All, I learned so much from this experience...

gratitude, fortitude, love, and peace. How in all of my worries could I find peace? 
The answer is, the amazing youth; their happiness, willingness, and the incredible rate at which their testimonies grew..

 I am also so thankful for sister Dixon’s mother who accompanied us, she had never been on trek and she was willing to come even though she is..... I don’t even know how young?

 But her words are; “your Trek, is where your feet take you! Enjoy getting there” thank you Sister Tuttle for your wise words. 
I need to Be happy in MY life, enjoy my days, my trials and it will pave the way for generations to come. 

I loved this experience, I hope I get to go again. I would do it in a heartbeat. 

The sorry little SAG

Jeff and a bunch of his cycling buddies wanted to do a training ride up the canyon. Luckily, where we live, there are many many canyons to chose from. This would be the first time he would do this particular canyon. The kids decided we would SAG him. That pretty much means, drive a car with supplies, just incase there is a need. With the promise that when we were finished helping we would  go to the reservoir to play in the water and try out our new kayaks.  When we got to the top of Cascade Springs there was no cell service, which wasn't a problem except I needed to follow my rider a little more closely. I left Ryleigh at the top of the mountain with another SAG group, where the guys would be coming back. It was kind of an up/down thing. I took the rest of the littles with me. We started down the canyon when we heard the very loud and scary sound of a tire losing all of its air. Not a big deal except that now we couldn't call for help and I have four little kids...... AND.... I was driving Jeff's truck, which means my ability to change the tire on my own was pretty limited, since I usually drive our swagga wagon mini van. I didn't even know where to start. I decided we need a little divine intervention and we offered a prayer of safety. After that, I decided we are going to hike back to Ryleigh. HUGE mistake. Which I figure out about a mile away from the truck. Up the canyon won't help us, no cell service and guys coming back up in a long long time. So then we go back down to the truck, grab all of our water bottles and snacks, then head what I think is down. All along the road there are a ton of butterflies. The kids are momentarily distracted by all of them. I am trying to make it fun by counting them and pointing out all the different colors. 
Then the road changes to incline and its not fun anymore.


I put Ashy on my back because he doesn't think this is fun anymore at. all.
We walked for about three miles before we finally flagged down a car and asked for help. I was on the phone with AAA when one of our friends came on upon us on his motorcycle. He wasn't able to ride his bike today, but he wanted to come see the guys. We squished in the car with the family who stopped and Gator road on the motorcycle with Kelly. We went back to the truck and the guys helped change the tire. We didn't do a very good job helping bike riders.

The kids were way happy to be saved.