Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Tuesday, March 24, 2020

Rolling with my Homies

We are so lucky to live by schools who offer computers for the kids to work on. This is definitely something that the kids never thought they would do in their lives, but how lucky are we that it is possible.
finding the groove has made it a lot easier. I also think maybe since I have to sit with each little kid for a while that I am getting a refresher...
Ash is practicing writing... He also learned the phone number song and the address song. Once he learns both he gets some Lifesavers.
After the earth quake we had a hard time getting the two youngest to sleep in their own beds.

We needed a little fun in our lives. To a hair dresser that means everyone haircuts. We cut 5 inches of MayLee's, 7 inches off Eden's, trimmed the boys, and Ry a trim and some blonde highlights. I totally needed a haircut too... Since I have never given myself a full haircut before I did a couple of google searches and watched some Youtube videos, plus also, I am a hairdresser so I understand the basics. I wouldn't recommend doing this for everyone, but I think I did a pretty darn good job. I can probably manage from here on out. 

This Sunday we decided to go on a drive to see temples.. We are smiling in the pictures, but there were a lot of potty breaks and whining... despite those small things we had a great time.

Sunday, March 22, 2020

Friday March 13 to Wednesday the 18th

The night before everything was coming to a head for Utah and the Corona Virus or Covid-19... This means a lot of worry for a family with kids who have weak immune systems. This is called immunocompromised as well as Co-morbities... which means they have more than one illness present. Alex has a heart transplant and issues with his liver, and May with her rare lung disease and spinal issues... I just couldn't take a chance.. I had already received information from the Transplant team trying to help us start navigating what we should do... Jeff was so smart and decided we should go out and get some supplies to stock out fridge and pad our food storage. We can eat from food storage, it was just lacking in a few things... The kids did SI school that day... or social distancing school, it consisted of Reading, writing in their journals, art, playing with each other, math on prodigy and starting the process of cleaning the house. Not many families needed to stay home yet. Twenty four hours later and the rest of state was closing down all schools. Things began changing so rapidly that it made our heads spin. The number of cases grew pretty quickly and people were freaking out. There was a made dash to stores to stock up on food and supplies. Shelves at the stores were so bare it looked like they had been robbed.

This is Asher's hand, so sore from washing and washing. 

The kids extra activities began to shut down, cancel and postpone so quickly. It was disappointing on so many levels.  Alex's Willy Wonka play, The girls Sussical play. Church activities, school field trips. All the sudden we had all this time together and we weren't rushing off to the next thing. Church leaders also called for all church meetings to be cancelled. I cancelled appointments in my home so that nobody would unknowingly bring it to us. We Threw out toothbrushes and started fresh with new. We changed and washed all the beds. We Cloroxed the light switches and doorknobs. It really brings us back to the time right after Alex's heart transplant. At first I felt like the world was just coming up to my kind of crazy. I was worried about germs all the time. Now the world felt like I did... I am not sure if I felt validated or more crazy... anyway... Wrestling with Daddy was not cancelled.

 Monday and Tuesday we continued to work, play and learn at home. We were preparing for big changes on Wednesday as that would be our first official day back at school online. I had taken each child's information about what they would need to accomplish in a day, what was expected, where to find the information to complete these expectations and put them in one notebook. Ry's schedule would be the hardest because she has 7 classes and it's the end of the quarter. The rest of them were going to be a bit easier except it was still pretty tricky because of French and my lack of the language. I think there really is something important to the immersive program. It is much harder to make that happen at home. I took the kids to fly kites.. That is way harder than it looks. Each kid wanted their own kite and I could simultaneously help May and Asher, so I would get one in the air and hand it to the kid and the other one would come down and I would just get that one handed back and the other kid would need help... But they ran all around and had fun anyway. 
We also made marionettes.. We need to do some little songs in french or a little thing about three little birdies... and puzzles and reading.... 

Wednesday morning we were jolted awake, I sat up straight and grabbed onto Jeff. The whole house was shaking. The sound was something that is hard to explain. The best I can do is say that, it sounded like multiple people running in a room over your head. You could hear it before it started rocking. Okay it sort of reminds me of that scene in the original Jumunji when the Rhinos are running....I was terrified that the kids had fallen out of their bunkbeds so I jumped up and ran out of the rooms, Jeff checked on the boys, while I ran downstairs to check on the girls... We all ran upstairs and sat on the couch. It was over in just a few seconds but it felt like so long. Our brand new canvas  family portrait fell off the wall and broke, a picture frame fell and broke but didn't break the glass,  a Christas fell and broke the head off, and we had some of our stones fall off the house. The after shocks were just as scary as the earthquake. Even today we felt a really big aftershock and I am still trembling. This was definitely a wake up call. We thought we were prepared, but we certainly could be better. 

Every day feels new and we are trying to make the best of this very different situation. 
Ashy probably won't even remember this. May might remember some of the feelings she had but not exact details. Maybe Eden if she writes things down. But Ry and Alex should remember parts of this.

The kids have reacted well and we hope they continue to be amazing adaptable humans. We do have our moments....

March (ing on)


I wasn't feeling well for Asher's Kindergarten orientation so Grandma took him for me! And Cal was there!!! I am excited for Asher to go to kindergarten because I know how much fun he has learning and growing. I guess I am not the kind of parent that is sad for school. I should be because I love my little people and I fear so many things. But I think the thing is; I really really think they can learn from someone smarter and more qualified, who has gone to school, who has perfected things and worked with thousands of students. There are things that I want to teach them, things that they can't get in a classroom. But there are things that I can never teach them, like: How to manage that friend that comes from a different home life, or a teacher that they don't get along with, but need to respect, or even that there is a schedule to follow and if you do turn things in, you will get an reward (gold stars baby... or the real thing, a good grade) I also like that for the most part my child feels loved by someone other than me. This doesn't mean that I don't understand it may not work for every kid.... Let's hope Ashy likes it....

We went to a wedding reception for the cutest couple. Page was from our ward, both she and her new husband served missions in France. So It was a super cute french inspired reception. They even served sweet crepes with all the fixings...

  This explosion of Gold Bond is from Ashy... I guess he felt like a little bit just wasn't going to cover it... In fact... We recently installed a bidet seat at home. One day Ashy came in to use the new potty while Daddy was showering. After he was finished, he said "Daddy- which button do I push to make this spray my hole?".... Oh dear....The rest of the kids think it's pretty great... Except not Ry... She won't even give it the Old College try.... No way!!!

Just keeping it real on Come Follow Me... Some are asleep... Some are coloring/marking there scriptures, some are completely lost... and the other side of the table is laughing at that side of the table.... BUT.... we try..

Thursday, March 19, 2020

February Happenings

Here is the run down of what happened in the last part of February...
 Quick Quack contacted our family because they were opening a brand new carwash. They do a fundraiser night to benefit community members and boy they did not disappoint. Scott and Barbie and all the amazing staff, as well as the Mayor and all those who came out to help our family, you are amazing!!!! We made signs and handed out suckers and chocolate kisses. The kids were so excited to help and to be outside holding signs. So many friends came to wash their cars. The community really backed us up and helped us pay some medical bills. I am always so humbled by the generosity of those who help our family, and I thank you.

Things that keep boys busy and away from the TV and electronics are things that go fast and make big messes... Luckily with his RC car, it's the go fast part that he likes. Ashy got this awesome RC car  as his Santa gift this year. I think he has been asking for RC cars for the last couple of years. It's like the girls and Baby dolls. They ask for the same thing every year. I guess it's okay to love dolls and RC cars.

Alex and his two friends from Lego League, took their innovative idea and created a science fair project with it. They made it onto district level. Unfortunately they didn't make it any further than that. Their project was a way to help water waste smell go away. They learned how smells travel, how waste water is treated. It was a really cool project. I think they needed more testing to advance further in the fairs. Way to go Gabe, Sean and Alex.

Eden's lovely teacher from last year was married!! The kids absolutely love and adore her. When she invited her students to the reception, it was an obvious go! We got to ride with some sweet friends.... Just to keep things clear for Eden later, Jhoffer is next to you, he is the groom... next to him is Miss Elise Vaughn your teacher... The rest of the kids are students in your class. Yes, Sweetie you are that tall. 

Cute Miss Stephanie (Asher's teacher)  is great at taking pictures of the preschoolers in action. They are learning to floss the tooth monsters out of teeth.

Preslee's new blue hair

Our cousin, Megan, is getting married!!! She is the cutest bride. We got to go to her bridal shower. I wish I would have taken a photo with her, however one of the games is to build a dress out of tissue paper... MayLee acted as our bride...

Speaking of cousins.... Eden love love loves babies AND these distant cousins in our ward. We were so excited to find out we are related. Eden and May ask almost daily to visit and smooch on babies.

That's it for February!!!