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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.

Monday, November 27, 2017

Skate park

Alex took all of his saved up money and bought a new scooter. He needed to try it out at an official skatepark. Eden actually loves the skatepark too. She is almost as brave as the boys. Asher Crasher Basher is the perfect name for my little dare devil. He just doesn't stop... He falls down one minute and is back up for another go, the next. I try and stay with ash to keep him safe, but he either goes too fast for me to keep up, or he is down in the bottom of the half pipe and I can't be up down and up and down the whole time. Plus also, he doesn't have very good skatepark etiquette. Asher will scoot right in front of other skateboarders or bikers, or who ever happens to be there. I know that they get annoyed, but I try to apologize. My pardons and what not, are usually met with grunts and  occasionally I will meet a kind hearted guy who laughs and is easy going. But not many, those skatepark guys are hard core. We try not to stay too too long, just so they can have their park back quick. And we try and go while May and Ry are at school. Alex was off enjoying himself so much, I didn't even get a still photo of him. But he sure did look awesome on his fancy new self paid for green scooter.








Work to be done

When Jeff was called to serve in the stake presidency, I was lucky enough to get to be a part of the council meeting the general authority offered. There was so much good advice, my very favorite thing was a story he started with. He said that they had a huge huge log pile that HAD to be moved every year and it was the job of his children to move it. It was hard work and would take a whole Saturnday to complete. They didn't even have a wood burning fireplace, so the wood just needed to rotate to keep it good. 

Then he said remember to teach your children to work hard, and to not be afraid of hard work. Work that makes you stay at it for a whole day even. We don't have a wood pile, but I have found there is other chores that would be so much easier for me to complete alone. But, all of my children will learn how to work. My garden couldn't have been possible without their help, and windows to be washed, and yard work, and of course their house chores. I am not asking them to do much, I don't think. But they all help, including the baby, who actually thinks he is left out if everyone else gets a job and he doesn't.

 So here are a few "mean mom" photos of the kids raking leaves. Alex wasn't exactly thrilled, because he came out to ride his bike, so he chose to rake with his helmet on. So did MayLee and Asher. Ryleigh was at school, so I only enlisted those who were home. Lucky little kids...






Oh my

I can't even, I just can't... It took lots of scrubbing. It's lipgloss.. or lipstick.... who really cares... but I got it out of the carpet. His clothes were a loss. As well as his cape. Around his eyes were the hardest part, so he just sported pink around his eyes...




Reflections 2017 Within Reach

Both Alex and Eden entered the Reflections program. Alex wrote a poem, a silly poem. He loves Shel  Silverstein, and he patterned his poem entitled "Without reach" to the same style as Mr. Silverstein.... He then painted an awesome watercolor of a boy looking with a magnifying glass at a lady bug. While we were in St. George, Alex found a really neat leaf that he took a photo of with my phone. All of Alex's art received award of excellence and is moving onto council.

Eden wanted to paint a watercolor of a bright flower. She also took a photo of raspberries in my hand.   I loved that she loves bright colors and both kids really like close up photography, like me. I know that I influence them in their photo's but they take them all by themselves. Find their subjects and then edit with filters, or no filters. This photo Eden took, also took 27 photos to get the right one. She had a lot of blurry or blown out pictures. Alex on the other had only took 4 photos and found his perfect shot.

Sunday, November 26, 2017

New found love



We already knew that Ryleigh loved musicals. Her Grandma and Grandpa Homer have taken her to a bunch of the Hale Center Theater productions. So trying out for Roger and Hammerstein Cinderella was definitely on her To Do list. She assigned herself to ensemble, knowing that lead roles are usually cast to 9th graders and those with a little more stage cred. She was so happy to do it too. She was loving practicing and also loved the friendships that she made throughout the performance. I never did get a photo of her in her ball gown, but she looked lovely. Our youth theater will be putting on Peter pan in the spring and all my kids want to try out. It is so exciting. 
Way to go Ryleigh!!!


















Extra Life gaming

Children's Miracle Network called Alex to share his story about waking up after his transplant. For those of you who aren't aware of those details, I will give a short retell. Alex had received his new heart and had beautiful color and progress healing from the surgery. Somehow he slipped into ICU Psychosis. He lost his memory of how to do anything and who anyone was. It was heart breaking all over again. One day I was trying to bring him back to us and I thought we could use his iPad to look at pictures of the family. When that didn't work I thought it would be cool to try a game. Pre-transplant he had added a bunch of games to play post transplant so that he could be entertained while he was recovering. Clumsy Ninja was the game I chose to play, even though I had no idea at the time how to play. Which was funny, because him being frustrated by inability to play brought him back. I am no doctor, but I stand to say,  gaming and games bring joy to people, and they may use a different side of his brain and it brought him back to us. So Extra Life gaming is a board game, video game group that raises money for great causes like Children's Miracle Network. That in turn goes to Primary Children's Hospital, which in turn comes right back to kids like Alex and MayLee. To kick off the start of the fund raiser they had Gator come to HQ for the live broadcast. This is similar to a football or other broadcast sports event. You can see a small corner of the broadcast, you can see different games being played, there are tickers ( little boxes with money amounts earned) along with your own game and stats, all on the same screen.
In just the short 15 minutes Alex was on, he raised about 300 dollars for the cause. 









We had a great time entertaining ourselves while we waited for Alex to do his thang. Clearly it doesn't take much. I love Eden and her happiness and silliness. 











Sunday, November 5, 2017

Basher, Crasher

I thought maybe I was struggling to be a good mom to Asher because I just wasn't being patient or, I was not talking to him about things. I thought I wasn't picking the correct battles and that I was wrong in so many ways with so many things... So I thought I would start documenting how things were going so I could go back and pinpoint some triggers. 


. 8:15- wakes up- mad by the way. I can't get his breakfast fast enough because I am currently trying to get May ready for STEAM club.

8:35- Get him and May exact same breakfast set out on the table and call him to eat. Throws second huge fit of the morning, includes laying on the floor screaming. It was the breakfast he asked for, a gogurt and part of a left over donut. I also offered to make him an egg, cereal, a waffle, and toast with peanut butter. He said no to all. I leave MayLee to eat and him on the floor while I start getting out my clothes. Two minutes later May is finished and comes to my room, Asher follows carrying his Gogurt and donut. I ask him to go back to the kitchen with food.

8:50- The alarm for STEAM goes off and I go to find my shoes. Yogurt is all down the hallway, floor, walls, and child. He is not at the table. I grab the wash clothe and attempt to speed clean. We get shoes on and shuffle everyone to the car. 

8:56- Asher throws yet another fit because he isn't dressed. I explain we didn't have time due to the clean up, and that we are just dropping off May and will come back to change him. He demands I dress him. I carry him to the car crying and buckle him in while he clings to his shirt. 

9:07-I am fairly certain as I unbuckle his seat harness that it's not going to be a smooth home re-entry. He slides out of his chair, try's to dive for the back seat to hang out till I am done waiting, so that he can easily go to the drivers seat of the car, he loves to twist all the dials and knobs; changing settings and scaring the heck out of me when the volume is ear splitting. I pull him from the car. He tries to climb back in. I shield him from the car with my legs. He runs to the stairs to pout. I bypass him, go inside, set down my bag, take off my jacket, wait for him, ask him nicely to come in, his reply is always no. I close the door, but rethink that since his new favorite thing in the garage is all the hand tools daddy stores in there on the tool bench. I have flashes of him taking the tools to my car. I count to five and tell him it's time to come in. I go out to him, he closes his eyes when I get near. "You can't see me if I can't see you" mentality. I pick him up and carry him in. He falls to the floor when I try and set him down.

9:10- I start journaling.....

9:27- He goes to the fridge and gets 3 cheese sticks, ziplock bag, and a pen. He wants to color on my journaling page. His pen sucks, I offer him mine. "I doin it", "look it mom" he loves journaling too. 

9:30- we shower without too much drama. I am pretty sure it's cause I let him bring in his string cheese. Cheese in the shower is a new thing for me. 

9:39- doesn't want to get out. I wrap him in a towel and hold him on my lap to rub his back until he calms down. 

10:12- I try to make the bed. He loves when I toss him into the pillows. Eight tosses later and I need to finish. He try's to help me. It takes sooooooo much longer. I get anoyd that it's such a long process, but glad for his help, kind of....He runs to my closet to try and take out daddies head lamp. I tell him to put it back, and he chucks it back in the drawer and slams the drawer loud. I decide to move the head lamp way up higher. This is the 100th attempt for Ash on that head lamp. I make a mental note to add like item to his Christams list. 

The next couple of hours I decide I can't be taking so much time writing. I need to be present to focus solely on making sure we both survive the day. Although it's filled with.. 
 Finding chap sticks screwed all the way out. 

Then the next day Halloween candy taking a bath. That actually turned out nice since the heat of the water melted all the bars, I just got to chuck the whole thing. Over and done. 


 
And the Christus figurine eating some of Asher's lunch.


Everyday is an adventure. 

Today I text Jeff,

I never thought I would yell, "Asher, where is the stick of butter?", "tell mommy where the butter is right now!". I found the wrapper which made me worry he had eaten the whole stick.  ALex found it stashed in the recliner behind the Velcro liner thing. I was fixing dinner and he takes ingredients off the counter to sample. He went behind the recliner to unwrap and sample the stick of butter in less than 1 minute. Not only sneaky, but mega fast....

He has also destroyed a small portion of my Thanksgiving decorations. *sign* I can't have nice things. We can't go anywhere because he is a runner and destroyer. Please bless, he grows out of this stage sooner rather than later. In the mean time. I will be home cleaning up messes if you need me.  




A little STEAM

Full STEAM ahead. 
Here is a photo of May doing some Math at STEAM club.
Here she is learning about structures and building


Halloween extravaganza

Big shark 
Here is Alex who seems surprised I wanted to take his picture during the school costume parade.
Eden is okay with it. 
We grew our own pumpkins in our garden this year. It is fun to have them to carve. They weren't the hugest bunch, but I will start a little earlier next year and plant on some of the warmest days and cover if it get cooled off again. I am going to be an awesome gardener some day, for now I am sub par and I guess that it will have to do. I can't be perfect and everything/anything.



Preschool costume parade

Halloween dinner was spider web bean dip, The web is sour cream. I just put it in a sip lock and trimmed of the corner and used it like a piping bag. 
And mummy dogs
Ry helped me with Eden's hair for her masquerade costume.

Tight pants... Jeff did an awesome impersonation of Jimmy Fallon... If you haven't seen it, check out Jimmy Fallon and Will Ferral. Kills me. 
But creeped us all out with this mask. 


















Mummy drawing

Eden's art is really coming together. I love that her mummy gir has body parts that now are greater than sticks and that this is in motion and leaning as if walking. I love that the green minion thing is eating blood, and that her mummy has bows and a necklace. 

St. George century

Last bike ride of the year. We all headed down to sunny St. George. A gorgeous ride through Snow canyon, a very fun "with swim suits" this year time at Sand Hollow, plus hotel swimming and geocaching. 



The water was a little colder than fun for me, so I only got in as far as I had to. We played on the beach the rest of the time. We also rented a Jet ski and had a great time taking turns going with Jeff. 














We like to write up posters for Jeff. I must have missed May's somehow.

Asher and Mine says, " Welcome to cycling, You're now broke" and Jeff's biggest fear: If he dies, his wife will sell his bike for what he told her it cost" Hahahaha!!! If you are a cyclist, you know exactly what I am talking about. 




Smiling because he is just about to cross the finish on the last 100 mile bike ride.