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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, August 26, 2018

Riding Trax

Kids- "what even is this?"
Me- "oh, this is a pay phone"
Kids-"why would you need such a thing?"
Me-"Um in case you don't have a cell phone"
Kids-"who doesn't have one of those?"
Me- "you"
 It's always an experience riding on Trax. Everyone should give public transportation a shot sometimes.





Happy 4th of July

We are so thankful for our freedom. We are thankful for those who have gone before who have made this country a place to do things we chose; things we deem good, praiseworthy and virtuous. 







Bike MS, Swimming Lessons, Meet the teacher popsicle party, May's testing

Jeff has ridden in the Bike MS ride in Logan a handful of times. He really loves the location. The kids love that they can float the ditch while we wait for daddy.


He finished and felt great.


 The kids needed some swim lessons this year because they really want to try out for swim team this year. I hope that they all get excited to have something to be passionate about. Since they are little fish, I am hoping they will be successful.




 Miss Eden got to meet her English teacher and her new French teachers. How cute is this popsicle party.


 Let's talk about MayLee. Ghaaaaa!!! So..........little miss has a problem with urgency. It seems like she goes to the bathroom about fifty thousand times a day. Along with a bit of accident issues, it was time for a little intervention. She had to have a Urodynamics test to help us start figuring out if her spinal cord has re-tetherd and if this is the reason she is having issues. Or if she is just a typical 5 year old with a tiny bladder. She was NOT a fan of this test; folks. I wouldn't be either. With catheters, stickers and looking at sensitive areas. Her embarrassment was extreme. May powered through like a champ. The day before she went in, I took her to the store to pick out a new doll and new outfit to wear. I have said it before and I will say it again. I have to problem rewarding my kids when they have to overcome an uncomfortable procedure. I told her that I didn't even have a problem with her crying, or saying that it wasn't fun thing. I just needed her to try and listen and follow through with all of the nurses instructions. She was such a good girl. obviously our selfie was before and we didn't take any photo's of OUR red blotchy eyes. Too much crying for both of us girls. I could just feel for her sweet little heart.

Days of 47, stake parade float.

Ryleigh and I have a goal to complete the young womanhood personal progress. I really wanted to do it again. It has changed so much since I earned it as a youth and even since I was a leader. Now that the program might be changing again,  I really wanted to have it accomplished and so does Ry before then. That way she will still have time to do the new program, if there is one, before she ages out of Young Women's. Then I will have a goal to do whatever will be coming/staying with the little girls. Alex is working toward his Faith in God and nearly has it accomplished. He just has two more experiences to finish and memorize 6 more Articles of Faith. He has until April to accomplish it, so I am confident he will be successful.

One of our Value 10 hour projects was to help on the Stake float. We loved it! It was fun to see our hard work going down the street. We learned a lot about what goes into float making. I could never do anything like the amazing folks who designed and put it together, but both Ry and I agreed that we loved doing it. It even received an award. We spent way more than 10 hours on it.






Another Of my ten hour projects was to plant a garden. Lots of the things that I am doing in my life already work as projects. I planned out, planted and am harvesting and preserving right now. The garden has been prayed over and is certainly something that has blessed our life. We have turned into little tan Homies because we spend so much time out in the garden. For dinner we call our meals "garden delight", because we use all our fresh fruits and veggies for our dinner. The kids have learned to make some very yummy dishes. We have tried a few veggies that we won't ever try again. There is a bit of trial and error. For instance, I am having watering issues with some of my tomatoes, they keep getting blossom end rot, and we tried turnips... (those are nasty) this year we have 6 different varieties of hot peppers, and they are growing sooooooooo much. We just can't have that much hot stuff. Two of my three Zucchini were consumed by squash bugs, so my big plans for Zoodles and zucchini bread have slimmed down a bit. Instead we will have tons and tons of spaghetti squash spaghetti. My neighbor brought us a rhubarb cake and the recipe, and now I know what to make with all the rhubarb I have frozen. It was amazingly good.
This is when this were just beginning to grow

This is now that everything is pretty established.
















Wednesday, August 8, 2018

Dirt Bike track.

Our neighborhood decided to rent out the dirt bike track.  Rad Canyon is just a couple of miles away from our house. The kids all really liked doing this. I only got a couple photos of Ash and one of Eden... But MayLee and Alex did a great job too.  I thought the kids might be scared or a little nervous to ride down the big dirt hills. They surprised me by taking right off. 









Bike wash

Everyone knows that a clean bike goes way faster than a dirty bike.



Once clean, we went for a ride.