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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.

Thursday, June 16, 2016

A little of dis and dat...

The garden is turning out so fantastic this year. It's such a big space that it usually filled with weeds faster then we could manage it. Now it is turning into a place we can all be happy to maintain. Each family member chose something to grow. We decided to start with the oblong troughs but found the rounds and just need to get a few more next year. Eden chose flowers, hers will be a great big sunflower. Alex chose cucumbers, May and Asher chose pumpkins, Ry chose tomatoes and peppers, Daddy chose carrots, and I chose beets and Kholrobi. So far everything is doing well, except the carrots:( I need a better idea about how to do them. I chose the seed tape this year. It isn't doing so hot. Oh, and the  leaves on the pumpkins and rhubarb are looking kind of sad with all the holes. The hail the other day was as big as a quarter. I don't know how I could have protected them better? 
Everything is looking so tidy.


The little girls got to go on a date with grandma H. They had so much fun. 
Haha hehehe hahahaha!!! 
Abbie and Asher.. 
This little guy turned one on Sunday. He is such a sweet baby boy!
He is walking all over the place, can say momma, daddy, uh oh, caca, and scream which is universal for get what I want/need right this minute. He loves to throw around balls, eat anything and everything, be outside, and be entertained by his siblings. He is growing super fast and is in the 92% for his weight. He hates to snuggle because that means he is holding still. But he blows the best kisses ever. 




These last puctures are just some park fun. We sure do love to play.. 











Sunday, June 12, 2016

The busiest boy


I decided some days are just not meant for me to be a productive adult. They are meant for running around after the kids, especially the littlest. Look at that face, I just love it. 
I thought it was a great day to clean out the van.. I knew the girls could entertain each other. I thought if I gave the baby a ball he could play with it in the garage while I got all the garbage out of the van. There wasn't really a ton, but literally three seconds later the ball was under the van and so was the baby. And he was ticked because he was wedged. #momfail #rescuehimnopics
I had to pull him out by his little leg. He was filthy, but rescued.
I gave him sink bath #1 and we were back in business. 
(Oh, and yes he still wears his voodoo beads) 
Lunch time (sorry no photos) he covered himself with his lunch. I put on a bib, unfortunately that is the only area that stayed clean. So those guys don't really help me. Sink bath #2.
For dinner he thoroughly enjoyed everything including his rice which he chose to wear on his forehead while he finished his watermelon. I did not put on a bib this time and he watermelon juiced the entire outfit. Sink bath #3...
Rice is one of the hardest foods to clean up. It sticks to the floor and broom. I have to wait until it dries a little, which makes it much easier to manage. I did get smart and just let him go nearly naked. We went outside to practice Gators spelling words. He did it with sidewalk chalk. The girls also drew while we were out. Asher just ate the chalk. 




He offered me some, that was a hard pass. I tried to distract him with the balls. 
In the end I just gave up, took off his diaper and let him be one with nature.. 
He totally loved the sprinkler. 








Tuesday, June 7, 2016

Things are moving.

Wow!!!  Check out how much Alex's teeth have already moved. He doesn't have to crank them anymore. What a relief. Although it does what its supposed to do, it's not my favorite job. It ranks right up there with potty training and giving Lovenox injections. All important, just not fun. 
Here is the before... Day 1...

Day 13..
The back tooth is moving into place and the expander has pushed those two front teeth apart perfectly.. He also got to choose some new bands. Doctor Bills Rocks!!! 

Saturday, June 4, 2016

Most recent activities and happenings

Moving into the hotter months means the splash pad opens up. Asher loved it. He would try and grab the streams of water but could never hold on. At one point I sat him behind an arching stream. Every time it shot out it startled him, but he loved the surprise so I let him stay. The girls loved running right down the center and Eden got a surprise enema when she positioned her booty over the spray. I don't think she meant for that to happen because she squealed and told the little girl next to her not to stand that way. 


Hahahahaha..

Once May gets cold she doesn't have any desire to be in the water anymore. So she watched from the sidelines. 
Gator is really enjoying scouts. Besides the Derby they did this boat racing called the Raingutter Regatta. 
He really did well and placed 2nd for the Bears. Way to go Gator!!

Yesterday was national donut day AND we discovered that Children's Miracel Network Headquarters is right here in our very own state. Alex is the 2016-2017 Champion Child for Primary Children's Hospital. What a great excuse to visit HQ and take donuts. We met Brooke, she took us on a tour of the whole building. It looked like a really cool place to work. We are so thankful for all their hard work that makes it possible for hospitals around the United States and Canada able to support patients like Gator and MayLee. 










Tuesday, May 31, 2016

Angry bird.. Angry bird parents, actually

About two weeks ago we realized that the nest in our front tree was occupied by a new mommy and daddy Robin. I thought perhaps it was just those two until we grabbed a selfie stick and found out there were four little blue eggs. The parents did not like my company at ALL. In fact they chirped and snapped their little beaks at me and flew at my phone and dive bombed anyone who came near the front yard. We could see the nest from Asher's room. All the little eggs had hatched and four little pink featherless babies with wide wide mouths were always poking out. The parents were very protective. Momma would sit on top of those babies while daddy would puff up his feathers and fly right at you. I tried to tell them I was leaving them alone.. But they would not have it. Ry and I tried to think of ways to seem scary so they wouldn't fly at us. My favorite was to pinwheel our arms so they would stay back. It was by far the most effective. Over the two weeks we did a little google searching about our little bird family. Well it seemed like today the babies had finally fledged. Relieved to get my front yard back I went out this evening to test sprinklers. (Gotta finally get the water on, the grass is getting a little crunchy) while I was trying to avoid getting sprayed I kept hearing chirping from our window well. Sure enough one of the little fledglings had gotten itself stuck down there. 
I went down stairs, opened the window, and took out the screen.
Ry got me two big serving spoons and I tried to catch It.. All the while it's making a terrible noise which alerts it's freakishly protective parents, they come and try to flap and get to us, don't they know I am trying to help. Somehow the little decided she is going to come on in.. So now I have this baby bird in our house with Ry and I screaming every time it gets near us. We expertly catch it in a toy bin with a purple dress-up over the top so it won't fly around and take it outside. I can't tell if it's relieved or upset that we interviened. All I know is that I am pretty sure it's never been to the backyard and it could be disoriented so I try to show it to the front or find its parents or have it chirp so they can find it..  Which they do. Job done.. They are out for blood... Sheesh!!
I hope it lives, I also hope they move out.  

Sunday, May 29, 2016

Newest brace face

Gator is starting his first phase.. His mouth is a hot mess.. 

Plus his awesome expander.. 


Handy helpers

Just look at this little helper. With her jammies on backwards and standing on her toesies to reach. Eden and May unloaded the dishwasher. Most of the time May can't keep her attention on the task long enough to complete it. In the past she is the first one to grab the wooden spoons and start smacking people with them. But tonight she was driven. She did such a great job too! I just poured on the compliments and hugs for a job well done. 

She unloaded all of the "kids"dishes as well. 
Eden is a pro at unloading now, she loves to have everyone help her, she is fully aware that many hands make light work. 

Ry was practicing piano but could hardly finish because Asher thinks he needs to be right up there flipping the pages and tickling the ivories.




Gator and Arianna helped Make A Wish celebrate and give thanks to Monte Vista Elementry students last week. This amazing school has raised over 100,000.00$ for Make A Wish. Back when Gator was just 4 years old he wished to visit Disney world in Florida. It was and continues to be one of our families best memories. 
These two have been buddies since they were babies.