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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.

Wednesday, October 18, 2017

The dudes, salsa, cowboy outfit, snazzy

I don't even remember the exact reason we were at grandma and grandpa's house. But I thought it was pretty darn cool that all the dudes were hanging out in this chair. 
 It has been a long time goal to have all the ingredients (well most) in my garden for salsa!!!! This year will be my first success. Tomatoes, onions, cilantro, and jalapeƱo all from the garden. I had to grab some limes and then the spices. It was yummy.


 Alex wore this outfit to school. Minus the hat because hats aren't allowed at school. It was killing me. The recess aid is my sweet friend and she was texting me updates of his day while wearing this outfit.

She writes- Seriously your sons pants are killin me today.

Me- It took all of my will power to keep from giggling, he chose the whole outfit. I had no idea he had  deep down cowboy fascination.

M- It't awesome!!!
Oh My, He is getting frustrated with dodgeball game and yelled out. " I can't move that fast, I got boots and tight girl jeans on."

Me- *totally die laughing*
 This little darling duo, keep me on my toes every moment. Someday when they are engineers, artists, or great leaders I will look back and not worry that they needed to touch so much stuff, cut, color, take apart and explore mediums like toothpaste and Ajax. It will be soon, I won't screech and lock myself in the bathroom to chill. One day, I won't have to lock up everything that is way important. NOW..... YES!


September 12 & 13

I really really had a bad mommy moment, look at her little eyes. I had taken MayLee to STEAM club (Science, Technology, Engineering, Art, Mathematics) that morning. Then took her to preschool. Ran to pick up Alex to take him back to see the Doctor about his lip results, and got a call from the preschool teacher that May wasn't feeling well. The results of Alex's test was all good news. His lip needed more time, it is common for anti-rejection medications to cause mouth sores, a condition that was only worsened by the baseball injury and then the healing time dragged on and on. And he was also clear of Aspergillosis, a huge relief to us all. So I ran him back to school and then went and picked up MayLee and ran her to the pediatrician. Rapid strep came back positive and well, since it runs rampant in our home. I had Asher checked as well and sure enough an ear infection later told me that he at least would need to be treated. May also had a bit of pneumonia in her lungs (common with other illness to have because of her weak lungs) On the way home we got a phone call that Eden wasn't well. I picked her up from school and she and I headed to the instacare so that we could both be checked at the same time. Me negative, her positive. I was sure it was only going to be a matter of time. Yup, Alex started complaining of his throat hurting and we took him to the pediatrician. He needed the antibiotic shot, it hurts really bad right in the rump. Oral antibiotics make his c-diff return and I would rather he be sad at me for a minute instead of deal with months and months of stomach aches and the runs. Strep is hard on our family. Later that Sunday, daddy nearly fell over while standing during a meeting and went to the doctor who sure enough diagnosed strep. Ryleigh and I washed our hands, till the skin was raw and had minor aches but think we come out unscathed. If I had known to keep her home I would have. 
 That little bit of pneumonia makes her breathing freak out. So she gets to have treatments to open her airway.  MayLee also needs a little day time oxygen whens he isn't well. Most things we can do at home. I like having just enough experience and just enough medical equipment to keep us out of the hospital. 



Saturday, October 7, 2017

September 11

Alex got to help at the Delta Golf tournament on Tee 1.
We had a great time handing out waters to the golfers, getting lessons and cheering way louder than we are really supposed to in golf. Alex has really found a love for the sport and now needs to save up for a set of clubs. 

We got J-dawgs which is never a bad thing.



Alex also shared his story, which I hear was awesome but missed because I needed to grab the other kids. The golfers were way way behind and our 11 o'clock appointment turned into a 2:30 time. Which made it hard for the little kids. I rushed back but he had already spoken. 





Lotoja 2017

Lotoja 2017 is successfully completed. 206 miles on his bike. He got the extra miles riding from our hotel in Logan to the start line. He spent tons of time training and riding with the BAA team and especially his good friend Brad. (Pictured here) He also road with Kelly and John and gained a lot from all of these guys and their encouragement and support.  

And here they go!
 Alanna (Brad's wife) and I got asked questions by a million people because we had on bright shirts and a walkie talkie. One lady was totally bugged that I couldn't answer her question. She told me I should know because I had on a bright shirt. I told her I am just a wife doing support for my hubby. Not happy with me at all. 
 
This is stop three waiting for the guys to get here. It rained just a little at this stop, which was nice because I was pretty warm most of the day and it helped to cool things off just a little.
I bumped into a heart mom!!! Hurray for heart moms and daddy bike riders.
 I am very tired and my makeup is smudged.... 
 Just 40 ish miles to go. My bumb would be killing me about now.
 Still smiling..
His awesome finish. I was so relieved and proud of him. Way to go Babe.
 We stayed in the neatest motel in Jackson. It had actual keys. 



 
Lotoja was the last of the three big rides and Jeff qualified for the triple crank. It was a lot, A LOT of hard work. 


I am super glad he got to meet some of his goals and cross things off his list.








September 7th

MayLee rushes into the bathroom this morning and says in an overly dramatic voice. (I have no idea where her overly dramatic-ness comes from)  "I have been having the worst day ever, and I know exactly why!!! My underwear keep falling down, they are on backwards". -she proceeds to strip and readjust her clothing. Then says. "Now these will stay perfectly on my bum, plus also, everyone thinks I am the most beautifullist today because of my side pony tail and side braid."

Hey folks if you are having a bad day, maybe you need to re-adjust your clothing. And you need a side pony tail. Just saying!!!





September 5th and 6th

And finally May starts Preschool. She had an orientation the first day which wasn't nearly long enough for this girl. She wanted the "really day" to happen. I had to tell her "one more sleep" then it will be the really day.

First actual day 


September 2nd

Smith's really came through for Alex. He wanted to cross another thing off his Live list, throwing the first pitch at a baseball game has now been accomplished. Not only did he throw a great pitch and made it all the way to the catcher. He got the ball back signed by the catcher, then Buzz came out and gave him a bat signed by all the players and a basketball signed by all of the Jazz team. I was a dream night for Alex.  








Ry requested no pictures and Homer Grandparents were there too. 





August 31

One of the neatest things for Alex is being able to meet the good people who do so much for Primary Children's Hospital. It was equally amazing to sit in the rad car. Just saying!!!!






August 26th

Ward camp out. And boating with Gammon's while daddy rides his bike. My phone died so I have exactly two pictures of our boating adventure. Not even on the boat. The girls loved playing in the sand and Asher loved the treats.


The nasty goose egg wasn't from the skate park the day before. No, he pulled a kitchen chair over on his head. This kid!!!!

Our camping sleep over was also an adventure. Daddy got out late from work, we packed up everything to tent stay. got stuck in heavy traffic, set up camp in dusk/dark. I lost the baby multiple times in the dark and nearly had a heart attack because there was a little creek I am sure he would love to play in. I need a way to keep him close to me. Then we squished but slept great in our "Hilton" tent. Broke camp in the morning and left for boating while daddy needed to get a training ride in. So he road home. But crashed because a bee or hornet got stuck in his helmet and stung him multiple times, he got so distracted with trying to dislodge whatever was ticked to be stuck in his sweaty helmet, that he didn't notice how rocky the ground was and his bike slipped out from under him and he couldn't unclip his feet fast enough. 

Alex did get to surf, so did Eden, Alex also knee boarded, I can't recall if Ry made it up. The boat has such a relaxing effect on babies. They are all squished into their life jackets and the warm wind is soothing and they want to go right to sleep. We did swim off the back of the boat too. 

August 24th and 25th Second summer

Three weeks of school when we first start, then three weeks off. It's nice to have little breaks. We call our first track off time,second summer, since it's still summer feeling. 

We wanted to try something we hadn't before so we loaded up the scooters and the kids and we tried out a skate park. I thought it might be intimidating for my 26 month old. But we are talking about  Asher-Smasher-Crasher-Basher. He was completely fearless and loved it so much. All the kids did. The teenagers at the park were not too sure about all the littles taking over. Especially since Ash has no sense of being in someone else's way. Specific people go with specific tricks they want to try and perfect (this is what I gathered) and want certain spaces to do these tricks and little people get right in the way. There was loud grunting from nearly all the older population. 
MayLee was the most cautious but was learning to put that aside and just go with it.
Alex thinks he is a Youtube star and narrates his moves. 
Eden just likes going way fast.



After our first experience being pretty great, we thought it might be cool to check out another skate park. The next day we tried out a new park about 15 minutes away. It was even better. I had a harder time taking photo's because I felt like I needed to chase the baby around so I could make sure he didn't get hurt. There were other little kids here and we went in the middle of the day when I hoped that the older kids were in school.