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.

Sunday, December 22, 2019

Recovery Day 4

Instantly I went back to not having any extra minutes as almost everything is taken up with Jeff and the kids. I find that there is not many left over for blogging....

 Asher is feeling great, most likely going to be discharged tomorrow. He had a ton of visitors and it makes the day go by faster, and is very exciting. Thank you all for the "distractions". He even had his first sponge bath in four days. Clean undies and pj's never felt so good. The sibs came up for a visit and we enjoyed being able to hang with him in his room.

 Ashy's Primary Teachers, Sisters Gee both came and brought him these cards the primary made him. We couldn't even fit all of the cards on his door, we had to use the exit door too.

We have always had such awesome nurses. Thanks for taking such great care of us. 

Tuesday, December 10, 2019

Recovery Day 3

 Recovery day 3....

What an amazing day... Julia from the foundation at Primary Children's invited the kids to Fly Delta to the North Pole. We already had Asher's surgery scheduled so we first told her we wouldn't be able to go. Then she thought maybe the other kids would love the opportunity to go and bring it to him..

The bus picked us up at Primary Children's.. But it was so big it couldn't fit so we got to walk over to the Eccles building... Along the way we met up with the cutest heart family and instantly the girls were busy playing...

This elf read us a Christmas story on the way to the airport.
we picked up our boarding passes and went through security. MayLee woke up on the wrong side of the bed and kept getting a little emotional. She did not want to be part of this picture.

All the pilots and "elves" helped us get ready to board.

The Jet Bridge was wrapped in paper the whole way down.. It felt like you were inside a gift...

Even the crew was dressed and ready for the fun trip..

The whole inside of the plane was decorated

We even got a snack, we knew we were flying because we had "trip treats" as our family calls them.

We sang and danced to Christmas songs.

 After we "landed" We could see the north pole hanger with all the elves inside..

There were stockings..
building a snowman
visiting Olaf
getting up close to the airplane

meeting the sweet puppies

Getting our face painted

We sat on Santa's lap and they had a gift for each child, even Ashy got to tell him what he wanted for Christmas over FaceTime.

I couldn't snap pictures fast enough to catch that Gator got a soccer ball and net and immediately opened it and found a friend to start playing with it... 

When we came back to the hospital in the entrance May's picture is still being shown there.

Asher got to open his gifts... he was so excited and wanted to get started on playing right away..

Then Daddy stayed while I took the other kids home..

There wasn't much keeping Ash at the hospital... He just keeps having wonky blood pressure. And he was a little too fluid negative. So we have to tweak those things and hopefully be ready in the next couple of days...

Thank You Delta for the amazing and magical north pole experience!!

Sunday, December 8, 2019

Recovery Day 2

Asher is doing great... We were able to get rid of so much today: the foley cath, the pacer wires, the drainage tubes, and a couple of meds. The plan is to keep him in ICU tonight and continue to tweak his blood pressure which needs just a little bit of medicine still. He has been pretty sleepy today, but has been able to eat and get up into a chair and sit for a while. That was rather traumatic for me and and him as he hurt and would cry out, but not cry for long. He was able to sit and eat Ramen and have a couple of slushes. Last night Ryleigh came for a visit, he was asleep for all of her visit. And today Grandma brought Eden, Alex, and May for visits. He also slept for most of that.