Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Thursday, September 24, 2015

Oh the details are a little muddy

Million Miles at Miller is a ride that I am happy Jeff likes to be part of. It supports Make a Wish. The kids love the finish line party so it's really fun to wait for daddy to finish this century. The kids did face painting, art, they hung out with the cheer leaders and cheered for all the riders that crossed. 

These dandelion wishes occupied two little girls for a very long time. Sorry to the place of business were we spread a ton of seeds for you.

Alex's mug will be in the Festival of Trees commercial. Watch for him. And support the Festival of trees if you can. Last year my sister in law did a beautiful tree celebrating my niece Jenivee. Mitochondrial disease took her from us way too soon. This was good and happy way to remember her. 
As we left the hospital after the filming, we came out to see this really cool bike parked in the terrace. 

We watched Goonies today between dance classes. Remember the chubby one that loves to eat?? Chunk??? I could totally call this little guy Chunk. And he is OK with that!
Monday Gator had clinic. His echo looked good, however his kidneys aren't very happy right now. There is always fine tuning with transplant kids. They explained that a normal child should be around .4 Alex is at a 1.2 . The best thing he can do is drink a ton of water.

Hurray his number looks a lot better... Just a little fluid goes a long way.. 

I got my Halloweenie decorations up today. This is one of my favorite months.. I almost have May's costume done.. She is going to be cute. 

Saturday, September 19, 2015

Baby boy

"To infinity and beyond" 
This little boy is getting easier and easier. He is into a routine, smiles more and doesn't have such bad tummy aches. 
He rolls all over and I have to lay him on the floor because he would roll off anything else. He also scooches.. What's that you ask? He arches his back and pushes against the floor moving into furniture and onto the hard floor.. Or if I completely leave him, he falls fast asleep. 
He isn't sure if he loves tummy time because it's so darn hard lifting those cheeks up. 

There is a first for everything

Eden and Alex are playing soccer for the first time this season. 

Jeff participated in Lotoja for the first time, on a relay team and caught the bug. He is pumped to do it solo next year if he gets drawn.

I managed to take all my short people to the IHH heart walk. We had a great time. This is the first year of doing it without Dad. 

Friday, September 18, 2015

Asher's blessing outfit photos

Thanks to the amazing Bethany Bee. 

Sunday, August 23, 2015

Let's review here..

Crud, I was only able to do one post last month.. Time is extremely limited with all my crazy kids, so unless I am up late, there isn't as much time to fuss with the blog. 
Our first time off track was a success. We call this "second summer", even the weather was obliging. Everything we wanted to do during our real summer just doesn't happen in three weeks. So having this nice time off was great. 

Eden's second round of getting cavities filled was successful. She made me laugh when it felt itchy on her tongue. Evverything was "just so itchy mom". She has great teeth and is good at brushing, but her molars are pinchy in the back and it is pretty tough to get the floss in and out.. Those cavity bugs love pinchy spaces. I am going to have to help get back there to clean them better.
MayLee played on the floor while they worked on sister sue's teeth.
This little birthday boy turned one.. Henning is so funny, he is a little stingy with his kisses for me, but not with his super cute smiles.
Grandma is the best Asher holder
duck face 
I  couldn't tell you why his hair looks like this, but he doesn't seem to mind too much.

We love to party.. 
Asher got his pictures taken by the fabulous Bethany Bee. A new and upcoming photographer. She did an incredible job. 
The Live Big Ride had a remembrace ride for families. Eden road tandem and Ry and Alex cruised the course on their own.

Notice that she is sporting her amazing biking gloves? 
We went to a fundraiser for a little sweety fighting a battle against the unknown. Food was yummy and the concert was awesome.

Way to go Basement Walls.
On Monday the 24th Alex had clinic. The girls got to play at the club house at PCH. It  was so nice to have Maylee be able to go in too. She had to be potty trained in order to go. Whew!!! She loves playing there. Shee didn't want to leave. Clinic was nothing but great news. Alex's Echo looked great, his labs looked awesome. We lowered meds too! After our appointment we went to the downtown library. This glass elevator is so Charlie and the Chocolate factory. It made me a little nervous to ride it. Clearly May was the most nervous.
We went on our first family camp out. Everyone slept pretty good until May got cold in the middle of the night. Then Daddy and May ended up in a sleeping bag together. I can't believe how much it takes to get us on a camp out. FOR ONE NIGHT!! We were too busy having fun to take photos until we were in the car on the way home. I couldn't believe that the leaves had already begun to change colors.
We had a few lazy mornings.
We hung out with this little yummy boy
The kids were able to swim in our neighbors pool.
We also went to Classic Skating (yeah baby)
The kids were more excited to do the bounce houses then skate. 
It seems like there is something to do for everyone. Even take a little snooze.
The girls wanted to try out the mask. Eden keeps me in line on what's (in her words) fashionable.
I wasnt joking when I said this little guy can fire hose. This week he actually got his eye... I need to make some of those little pee pee tee pees...I wasnt taking this photo to document the peep. I was really trying to show that this little outfit that fit so perfectly is a 9 month outfit. WHAAATTT my baby is not even three months and is wearing a 9 month outfit... I think it was tagged wrong, 
Papa Homer and Gator went on a Day date. Alex loved getting up close to some of the exhibits, do't worry he got special permission. He has so much fun hanging out with his Papa. 
Asher is daily working on putting on weight and growing.
Ry turned 11, and went back to school the same day. We got Kneaders to take for lunch. She wanted ring pops for her class treat. Daddy made homemade chimichungas for dinner that were super yummy. Happy birthday Ry, you are so amazing in so many ways.
This little miss just started her first year in dance. She has an oxygen tank that sits at the side of the studio, a 25 ft. hose, amazing teachers willing to take on a special lung kiddo and lots of excitement.
This little poser also started dance. She is thrilled to be dancing with so many friends.
We had a great experience at Courageous Kids. Each kid got to try all the track and field events. Alex absolutly loved the long jump. He must have got in line 15 times. 
Ry really liked running fast for short distances, she crossed fifth in the 600 meter. MayLee loved throwing the javelin and Eden liked the art table. Eden liked running but she is definitely my little budding artist. 
his new heart is treating him good....

Grandma and Papa came to be with us. I put them right to work holding baby and running around with kiddles... They saved my bacon. Sometimes I get to events/activities and think "what the heck was i thinking?"
Each child was awarded a medal. BYU track and field students were so amazing for giving up one of their nights to come help kids like mine try something new. Thanks! 
It doesn't end.... Eden started Preschool. The night before she puts this under her pillow, a gift from Miss Joey that is supposed to help her sleep. She kept calling out, "it's not helping, I am still too excited to sleep" 
She had a blast!!!

I am officially caught up until tomorrow.