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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.

Friday, September 23, 2016

The messiest man + Clawson side birthday celebration







 The sisters minus Jess.... 
Grams
Eden


MayLee


Ashy
Wells and Alex

Arlington

Papa and daddy
I am missing Marcus and Henning; Oh and Chaison and Jessica (and their puppies) couldn't make it. 
Dang it...












Official first day of preschool

"And I've sent her, and it is done, so I did do that".. Thanks Mayor Bellwether.. Perfect little thing to say. She is loving every minute and asks how many more sleeps until preschool.
She even got to bring in her mercan gurl doll "sweetie" with her the first day.


Ry turned twelve

My amazing, kind hearted, great helper daughter turned twelve... I was sad she got this old, for like 2.5 seconds. Then I realized, built in babysitter whoot whoot... Now, before I get hater mail... We have worked out a system. She isn't being abused as the sitter. She also gets rewards like a house to live in and food to eat. AND I never feel too bad buying her little extras if she has helped with the kids. See win win. She wanted such specific things this year. 12 years means she could finally add a little color to her hair. We decided to do a melt and she looks amazing. (Not hard when you are pretty cute to start with) she also gets to wear a bit of makeup. As in, a light shadow and some mascara. She wanted shoes for her birthday gift. It still makes me laugh that she asked for homemade Salsa and Wonton Salad. Loving herself some salsa!!!


And a mint chocolate cake!!!!

So yummy


Wednesday, September 21, 2016

LOTOJA is in the books

after months and months of training for Daddy and months and months of patiently cheering him on while he trains, Jeff accomplished LOTOJA. If you aren't sure what that is, that she okay I didn't know before either. It's a bike ride from Logan, Utah to Jackson Hole Wyoming. That is roughly 205 miles and over 7,000 feet of elevation gain. That is a dang lot of saddle time. While being a cyclist comes very easy to a lot of people, Jeff works really hard to earn those miles. He has overcome some health issues, changed eating habits, plus he has had been awesome at working the mind game. AND he met all three of his goals.. #1. To finish #2. To complete it in under 13 hours #3. To finish in under 12 hours riding time. I met my goals as his support and as his ride day support. Hurray for us!!
This is where it all starts. It's fun to come for packet pick up and see what the starting line looks like.
Shout out to JJ for being such a huge part of Jeff's training and motivation and support. 
This is how Jeff found me at each supported stop. 
Still smiling.. This was about 140 miles into it...
Oh yeah, driving alone... Singing LOUD and probably off key, but I think I sound phenomenal. 

I killed it as the support.

He did it!!!!!



Not a Lotoja virgin anymore!!!












Friday, September 9, 2016

Thursday, September 8, 2016

And number Free

In preparation for Ry's birthday we visited Peterson Family farm to pick up some salsa making supplies. Ry asked for homemade salsa the past two years. We got what we needed and the girls asked for a treat.. Nothing and I mean nothing is as yummy as a super juicy peach. And I quote, "this is better than candy" -Eden 
 We also hugged the baby goats, and played in the corn. 








I love how MayLee wants to tell me things like her sibs do.. It goes something like this.
"I have good news and bad news.
The bad news is.... I really don't like this apple.
And number free (three), I said, I don't like this apple."

Also Ashy boy got his stitches out today.. I took the before pictures, but failed to get an after. 

Add one more injury to his growing list. Yesterday we were walking, just walking, and he tripped over his very own feet and fell face first. Instead of catching himself with his hands, he caught himself with his lips. 






Tuesday, September 6, 2016

Alright stop already

Poor little baby boy. So full of energy and curiosity and life. Asher climbs on everything and runs instead of walk. He wants to be outside in the middle of the road and up on rocks and eating dirt. He also wants to be up in my business while I cook, clean, or really anything. Yesterday he followed me into my closet, I was kneeling to put away some clothes I had just folded, he tripped on my feet, we have a stack of cabinets with open fronts that is our shoe rack. Asher's head made contact with the lowest shelf and I knew it wasn't going to be good. He perfectly sliced open his head. While tape or steri strips probably would have worked in an older kid, Asher is so likely to pick and touch his wound, plus also he falls again and again and who knows if they could withstand more trama we went with stitches. 
Poor little guy. 
It actually doesn't look too bad in the photos. 

Today we had to change the bandage. That is NOT very fun. 

Because his little mouth was open yesterday from all the crying, I counted four new teeth about to rupture. We are going to need a lot of cool drinks and maybe some Tylenol.. 



Mom fail/mom win

I can't believe that I last some days!!! 
I woke up this morning ready to win the day. I got kids out the door to school on time, bellies full of breakfast, lunches and homework in backpacks with my kindergartener in appropriate pink and purple for color day. Once they were off, I cleaned out and organized my bathroom drawers, got the two littles dressed and ready, me showered/ready, started a load of laundry, got the dishes loaded, beds made and began cleaning out my sock/unders drawer. Then I took May to preschool orientation...

She is beyond ecstatic!!! Cannot believe we just have a few more sleeps till the real deal, not just the teaser. 
Took some bike gloves of Jeff's to a friend for mending.
Ran to the RX for Alex's meds.
Then ran back to the school to pick up my kindergartener.. 
Made it home to do my friends hair and this is when everything fell apart... 

Ryleigh has a Beta fish named....(I actually don't know it's name) in her room. Asher has pulled the full tank, fish and all, onto the floor once and dumped the entire contents of three jars of food into it last week. Thank goodness Beta are generally very tough fish. We realized that because it's low enough to reach, we obviously need to find a better location, or get a lock for Ry's door. Yesterday, at Home Depot we found a child lock we hoped would work. We have levers instead of knobs, which is why my tricky 15 month old baby boy can get into her room. 
Why yes, Asher can open all the doors inside our house. Who's dumb idea was levers? Well, it was mine, they are esthetically pleasing after all. We didn't have children when we built our home. How was I supposed to know this bit of critical information?
The child lock did not fit.
We did move the fish tank back to Ry's room last night because we assumed it would be safe until we could get another child lock that did fit today. 
Ashy is happy to play in the playroom downstairs while we are working away. He must have noticed we moved the tank, because he once again pushed the tank off of the little table. The older kids come running to the salon to tell me. I grab towels and a little cup of water and run down stairs.. At first I can't even see the fish.. I am pretty sure it's a goner. I notice it, but stand there like an idiot because I don't know if I should pick it up with my bare hands or try and scoop the little sucker into my cup of water. I ended up doing a combo of both when the fish starts to freak out when I touch it. 
The fish is saved for now.
 It might not be able to handle one more episode like this folks. Mom fail!! 

Now that I have rescued the fish, cleaned up the water mess and the kids are playing sweetly together again. I go back to doing my friends hair. 

I kid you not, ten minutes later we have another crisis as May comes in telling me Ashy now has a stick. I have no clue what she is talking about.. Asher strolls into the Salon with two mouse glue beds stuck to him. (For crying out loud, I hate that we even have to have glue beds. Eeeewwww, I can't stand mice) One is stuck to his front the other is stuck to his hand. Should I cry or laugh??? I grab my phone to document, otherwise I am pretty sure you would think I was making this up. I tried wax remover, Medical detachal, and baby oil. It was a sticky mess.. Mom fail. 


As soon as the kids made it home from school,  we ran to the store for a baby gate and some new fish food. We might be in the market for a new fish. 

Ryleigh did head off to her very last Activity days activity. Tomorrow, she goes to her first YW activity. WHAT??? Crazy right? And she has her first student council meeting. Then her twelfth birthday on Thursday.. 

One other crazy thing happened.. I started going over spelling words with Gator tonight. Eden was working on her letters. I told Gator that his spelling words looked tricky this week and we might need to work extra hard. He said he thinks he could manage and to fire one at him, so he could be the judge of the difficulty. I read through the words and decided to go with the word yellow. Well Alex begins Y-O-L.. I stop him and say try again, this time I emphasize yell in yellow.. He try's again. Y-E-L-O. Clearly frustrated at her brother Eden spells yellow, Y-E-L-L-O-W.. Then sings the little yellow song and blows us both away. She is paying attention in school. Watch out Mrs. Mac, she is going to rule kindergarten. After that Gator only missed two other words. Go Gator!! 

I just barely made it through the day today.. 

Important lesson:
#1. stay-at-home-working-moms are super busy and need to wait until their short people are sleeping before taking on a client. I cannot believe people think we lay around and eat Bon bons, hopefully that myth is dispelled by now. 
#2. Move the fish
#3. We all survived which is really a mom win.