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.

Monday, January 13, 2020

And Then...

Short lived....

I got a call from Alex's transplant team on January 2nd that they finally got his DSA back, this stands for Donor Specific Antibodies. I thought we got all of the test results back, I forgot about the DSA. It looks like his are elevated a little bit. Which made them relook at structures, like his coronary arteries. He has a little bit of narrowing as well. Soooooooo now we will wait two months until we can retest.

It was MayLee's Birthday weekend and we started off everything with a Monster Truck Show. Ashy got it for his Christmas present. Then dinner with the Clawson side. We made homemade pizza, per her request on Sunday and I took her Costa Vida lunch to school on Monday. She really did have a great birthday and we are so happy for her. She really wanted a big basket and an American Girl Doll bike seat for her bike. It is so cute and even comes with a helmet for her doll. They will be riding around in style when it finally warms up enough to go out riding again.

The girls made it into the Youth theaters production... Eden and Ry are Who's and May is a little fishy. This was MayLee's first time trying out and she worked herself into a few tears after she boldly sang Rubber Ducky.. She remembered her words and stayed (mostly) on pitch. Eden did a great job,  singing 'I was born to Entertain' with almost as much sass as she sang it at home. Bless their hearts, they totally get stage fright from me. Yet they keep trying out.

Daddy, Gator, Ashy and Grandma Homer all went to visit Great grandma Eiman in Idaho. They did some of our favorite and most important traditions. Visiting Grandma is the best! What little boy doesn't like the Army Navy surplus store?

The girls stayed in town, went to dinner, and thrifting. We had loads of fun.

I got released from primary singing time and I'm now working with the young women. I haven't been in young women for 12 years, so I am pumped to be back again.  I loved Singing time... two Sundays ago I did musical measles... I laughed so hard about where the kids placed the stickers. Especially one of my little buddies lifting my skirt and putting it on my bootie... I promised the Primary kids that I wouldn't take them off until I got home. Hahaha little rascals.

Wednesday, January 1, 2020

Happy New Year 2020

With 2019 a couple of hours behind us, I am determined to blog again for my children. This is like a yearbook of the things I can unabashedly gush/brag about our family.

 I can't believe I missed a whole year. I missed so many great stories and wonderful accomplishments. Luckily, Jeff has done a book for us and I am so thankful he did. To be honest, somethings just had to give and this was it.

2019 was a fantastic year.... But......I am glad to be on this side of hard.

 I am not so mislead that I don't understand that there are not more hard things is our future. I am also not naive enough to believe that we will most likely not have an easy time, all the time... But.... I am basking in the lull.

A biking analogy for all you cyclists out there..... There was incredible elevation gain this year for the Homer family... We probably did something outrageous like Torey Philipp, who if you don't know, recorded 1 million feet elevation in one year. That means he went uphill for 1 million feet.  He also got to go downhill 1 million feet. He had the descent to look forward to after all those hard climbs. With the wind in his face, the bugs squishing on his body, and his average speed looking better and better on his Strave (this is a distance and elevation gain tracking system). With some of the tough things behind our family, the descent feels amazing.

Ry- Finally finished that PE packet... She did a PE packet in order to make room in her schedule for more electives. She has grand plans to get her learners permit in January. She has helped and managed the kids for endless hours while we take other kids to appointments, or even if Jeff and I go on a date. She rocks!

Alex- Had his yearly Cath and Biopsy of his heart. Always a bit unnerving leading up to it. It came back squeaky clean with no rejection, all his labs look awesome, meds are in range, and the pressures in his heart look better than they ever have. He has worked so hard to remember to take his meds everyday, to learn the names of the medications he takes,(I can hardly pronounce some of them, so a huge endeavor) and to get good exercise and sleep. He takes pretty darn good care of his health for a twelve year old. This Cath and Biospsy goes to show how hard he works.

Eden- With everyone having something kind of huge, being in the middle, and the happy-easy kid, Eden gets overlooked a lot. She isn't in crisis, so I do a terrible job of making her feel special and needed. Eden helps at home, obeys, works hard in school, and never complains, that has to be tiring. But she just keeps going and going.

MayLee- MayLee has done a great job in school and with her health. She takes things in stride and is good at helping with Asher. May has matured a lot this year, and doesn't have as many break downs. This helps us as we learn from mistakes. This little perfectionist is learning to let things go, for herself and her classmates/friends.... She was the kid who told you that purple was not the color of the sun. Now she can see that it is an artist's perspective. That helps a lot in school. Although she will still tell you that, "We are listening now and we can talk later" and "We have a schedule to keep, let's stay on task".

Asher- You would not ever believe that this boy was diagnosed with a heart defect. That he had open heart surgery, that he went on heart and lung bypass, that his stenosis (narrowing) was at 2mm when it should be 10mm. They sent him home after five days and he was off all medications at 10 days. That it took almost physical force to keep him sedentary to give his sternum and body a chance to heal. You wouldn't believe how hard that was. The moment we walked in the door, he jumped from the top of the stairs to the landing, jarring his whole body and crying out because he forgot that such things might cause pain. He doesn't walk anywhere, he runs full speed... in socks... on our hardwood floors.... The next fall/jar came when he slipped on his socks and fell to his knees.... Or the angry child that lives inside him when he is on Beta blockers... Oh man.... I know that those who brought us dinner were surprised that we needed the help, especially since Crash was usually the one opening the door. But to try and go to the grocery store, let alone get him in the car was a full hour fit of rage while he told be that "I hate the store", "I really don't like you", "I want to stay home" (he couldn't stay by himself, although I seriously considered it) ..... We got a flat on the way home from the hospital, AAA saved us. The next day I had to take the car to repair the tire. He asked me the whole time we were at Big O, if we could go home now. It was brutal. After that we came straight home. There would have been no making of food, no shopping, no minutes to contemplate meal choices... Those meals brought in saved my bacon. Whew!!!

Jeff and I have had a few bumps in our health, me with the miscarriage and Jeff sorting out his blood pressure and hurting his back.

But so many other good things happened that we can easily over look the tricky stuff.

Last night the kids tried their hardest to stay up all night. We did puzzles and watched movies. We had yummy food. Ry did a movie (Knives Out) and had friends over. At midnight Jeff had been asleep a couple of hours, I was quietly putting a puzzle together. The big girls and the little kids, went out to ring in the New Year screaming and shouting with the neighbors. It was awesome. Gator stayed up alllllllll night... Ry made it to 3 AM, Eden to maybe 1, Asher and I fell asleep as soon as our heads hit the pillow at 12:45, I think same with May...

This morning Jeff got up and ran 4.3 miles in the New Year Revolution at the Olympic Oval. Then he and I rode our bike on the trainers... We went to lunch with some amazing friends.... Then, Grandma and Grandpa Homer invited us over for a British dinner of, Prime Rib Roast, Yorkshire Pudding, Roasties, and a green salad... Then I was in charge of dessert. We did cake batter in the waffle iron and ice cream and toppings... Soooooo good.

Closing out the first day of the new year with things looking pretty darn great.

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!!