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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, April 29, 2016

Helping mom

My little buddy.. 
He loves to pretend to drive cars...


Make messes..



Help me with the bunny..


Help me with the garden..

And sometimes sister sneaks in and wears her awesome Hello Kitty socks with her red sparkle shoes and feels fabulous doing so.







Friday, April 22, 2016

Nine..


I can hardly believe it. 
I wrote that number and did a double take. All throughout Alex's life there has always been a question of him making it to his next birthday. I am so grateful each year that comes to a close and for the one that's begun. 
On his special day he chose Chick-Fil-a lunch, which we brought to the school and stuffed ourselves silly. He brought push pops to his classmates.. I understand in a new way why he loves candy so much. (More on that later) 
He had a huge dinner at his favorite restaurant Texas Roadhouse. He had to sit on the saddle and the server was awesome and brought Icecream to us all.  He joined his friends at scouts and finished out the day.
All the pictures are on dad's phone..

The next day he was the speaker in behalf of the patients from Primary Children's hospital, at the Cardiac transplant 30th Anniversary Celebration at the State Capitol. 
It was an honor to sing the praises of the hospital we adore and the teams we love so much.




In between press conference's and the event in the evening we visited my sister, who will be uber embarrassed when I post a picture of her with all her probes, but looking absolutely awesome regardless. She is being evaluated for candidacy of a brain surgery that will end her seizures.. 

......
I better not unless I ask her.

And if we weren't (well I was) star struck by meeting Heidi from channel two, we absolutely ARE star struck by being around Paul Cardall. His talent at the piano is amazing, he played Gracie's theme. It's one of my all time favorites, I even had the pleasure of knowing Gracie before she passed away, for who the song is named. She was also a transplant recipient. 
  MayLee thought she should also "play" the piano in the state capital. Stress me out. I hope someday she comes back to really play. 

Here's the gang! We are so happy that Alex did so well. He gave his speech perfectly. Getting opportunities like these to verbally express our graditude is priceless. 


So even though this year wasn't a friend party year, it was a family party year. Gator chose classic skating!!!






On Monday Alex visited clinic. 
There was so much good news I could hardly stand it.
*Heart looks amazing on echo 
*meds are therapeutic
*he looks great physically, grown some and gained some weight

We don't have to make a trip back for 3 months for another clinic.
We don't even have to have a biopsy till January!!! Eeeeepppp!!!























Tuesday, April 19, 2016

April in full swing..

We are buzzing around like little Homer bumble bees. It's just normal daily routine, and I am thrilled to be doing it all.
Jeff, Ry and I went to the morning session of General conference. We are so lucky to live close enough to be able to attend and be in the exact same (huge) room as our prophet and leaders.

There just isn't enough hours in the day to accomplish everything I want to. But I am trying really really hard.

I know that at some point things will be different. My kids will grow before my eyes, they do now and I try hard to savor them at each of their stages. Aaaahhhh look at this love... These buddies played together pretty well. Actually, Tank had a hard time keeping his hands off of his friend. Especially that glorious curly hair. He was trying to grab it anytime his hands were free.

 Dance class has been so much fun. I love observation day. Miss Chris and Miss Michelle have done a great job with my girls.

 Pine Wood Derby baby!! It was a year of learning. Getting the wheel placement and the weight placement is going to be our goal for a fast car next year. Alex made an Army jeep, complete with extra tire and roll bars. They painted it gray at the shop and it was an awesome finish job. I didn't know how to put the graphite on or in the wheels and soooooo, I rubbed it on the surface of each wheel. I know, I know rookie mistake. Also, we are already planning body style for next year. I know he wants to do something pretty amazing.

Sometimes you just get worn out. 

 This guy is crawling everywhere. He also went in for his 10 month doctor appointment. While his weight is surprisingly normal, he is in the 97% for his height. He wears 18 month clothes and eats like a champ. He loves jello the very most. He growls like the Hulk when he really wants another bite. He pulls up on furniture, but hasn't attempted to stand alone. He loves to explore (time to keep the bathroom door closed) his brother and sisters are constant entertainment. He doesn't like to snuggle anymore, but he lets me kiss on him for a few minutes. he can play patty cake and wave bye bye, but this little guy doesn't say any words. This surprises me. Gator took forever to speak as well. We always thought it was because of all of his medical issues. Eden started saying words at 8 months. Clear words with meaning. MayLee wasn't too far behind her. She could say momma and dad at 10 months. No, grunting and growling seem to get him everything he needs. He loves music and even does a jig to my cell phone ringing. So much fun having this bubba around.
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 Spring Biking has begun for Jeff. He did a great job at the Salt Lake Marathon bike ride last weekend. He is hoping to get the draw for Lotoja this year which is Logan to Jackson Hole. I think my booty would be so sore.


 We took an adventure walk today. Everything is in bloom and we adore all of the flowers. We sang popcorn popping because it truly looked like someone glued popcorn to all the trees.



 May collected bouquets of "the most prettiest flowers ever" She wanted to give them to her grandmas. We stopped and sniffed so many pretty trees and looked at lots of big rocks and watched a couple of bugs, "eeeewww" and checked out a couple of dried worms, we talked about the windy weather and how it was starting to get a little warmer. It was all very exciting to a three year old and her baby. ESPECIALLY because this is our first untethered year. No oxygen tank to pull on. It felt amazing.

Saturday, April 2, 2016

Posting a title is sometimes the hardest part.

Last I left off we had just enjoyed a lovely spring break, which we mostly stayed inside for, on account that the weather was stupid. 
It rain-snowed the whole time.
 Some indoor activities were pretty awesome, like seeing my niece Arlington perform in Lion King Jr.. She did such an amazing job and I was so tickled that she thought it was so fun.  My kids sat totally loving it. Except Tank, but he is a teeny baby guy and can't sit through anything, so he really doesn't count. 
I love the way Henning is looking at Arli like he isn't quite sure what to make of this situation. And Wells and Gator are proud as punch to be near the actress. May is just happy her pony is with her. Somehow Ry wandered off to visit with her friends who also performed and missed the photo op.. 
We went for Icecream after.. 
Yum..
Ashy finally learned to crawl. And he is mega fast. He gets lost sometimes.. I am used to May who had a cord to follow. He ended up in the bathroom, behind the door in the dark.. 
Don't worry we got him out. 

The kids got spoiled at Grammas and Papas.. And we colored Easter eggs. I studied up on why we celebrate Easter the way we do. I had no idea the Easter bunny was a symbol of fertility, as well as the eggs.. Hahahaha.. Makes perfect sense. Sometimes learning why we do what we do, uncovers a humorous back story.
Papa opted to watch the little guy.
I found out that there is a really neat gospel based Easter walk. We have lots of live Nativities, but I have never heard of an Easter walk. You walk to a few closely spaced replicas, it was a quiet and reverent walk. I thought the folks who put this together did a fantastic job. What a great way to remember our Savior and understand His crusifixsion and resurrection. 

It was getting too dark for pictures. 

May brought me these beautiful flowers. She also found the cup and filled it with water. Of course I was totally thrilled, these happen to be favorites of mine. 

Alex has been battling C-Diff for a couple of weeks.. But we got the call today that yesterdays test came back negative.. I am so thankful, if it gets out of control for him it can be scary. 

We have been loving conference. While the men went to Priesthood session we played at the park. He looks so big in his swing with his toothy smile. We had a sit down, him and me, about this growing up so fast business. I told him to cut it out! I just want him to stay my chubber chubs baby boy for a little longer.