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.

Wednesday, October 19, 2016

A short Gastroentrology appointment...

That is not a short word.Gastroenterology.... Did I even spell it right? Hahaha!!!! Gators tummy troubles and reoccurring C-diff was the topic today. We think we finally have a plan. It is such a relief to be moving forward when so many times we have issues that keep reoccurring. And it's almost Cath time. The big one, this is the one that checks his new healthy heart. Hopefully we can get these things wrapped up before the new year and we have to start over with our insurance deductible. Who am I kidding. Gator meets his deductible every year. We also ran over and found Miss Elizabeth. 
Eden snagged this blurry selfie

Speaking of Eden.. She was awarded the character award of Creativity in front of the whole school today. 

We are so proud of our shining kindergarten artsy girl.

Monday, October 17, 2016

Come and gone...

Time that is... Hold on to moments of joy, let worry and despair move quickly on its way...

We have been forging ahead, here at the Homie Homestead. 

Ry finished up her very first season of volleyball and was finally struck by the love bug. She thinks volleyball is great!!!! This is a sport she actually really really loves and wants to play and be part of. She wants to play again... Her team Sugar and Spikes did awesome. They went all the way to tournament against the oldest team 6th grade to 9th grade and lost by two points... They won the first game, lost the second, and lost in the end. Ry even pushed through an illness she was experiencing. 

Thanks Coach Lyon for being awesome and teaching her the ropes.

Eden is making flowers for Auntie Preslee. She made an entire bouquet. I took it up to her last night with Ry. Jeff stayed home with all the littles who aren't allowed back in the ICU. 
 Gator is our guitarist and I think we know what Ashy is going to want to do... Percussion!!!! 

Preschool filed trips are the BEST!!! We went to Gardner Village to see the witches. 
Thumbs up

There was so much to see....

Eden had her friend party! It was an Arty party and a huge success!! Having all of those little girls in one room was busy work for all the adults, but we managed and they all had a blast.
I didn't capture much of the fun because I was so busy running the show. And Jeff was so busy managing the short people, and Ry was my assistant and well.... We got about three photo's... 
First as the girls were coming we set up the Party Rocker...we played music and had lights, there were balloons to play in as well. Then we read some inspiring art books we got from the library. It was fun to see all the different kinds of art. Then we had pizza... I ordered the little aprons from Amazon prime on Saturday night, and we got a knock at the door during the party. They had arrived just in the nick of time. After we cleaned up pizza (I was surprised that some kids don't like pizza, but we were saved by the breadsticks) the girls each got a canvas with their initial. They were able to paint it however they wanted. They all turned out fantastic. We sugared them up with cake and ice cream, opened presents and then... Sent them on their merry ways... Thank you all so much for the wonderful and thoughtful gifts and friendships.

More to come. 

Sunday, October 9, 2016

I can't make this stuff up

LDS General Conference came and went. It was lovely! So much spoke to my heart, answered my questions and validated my feelings and thoughts. 
Church should be in pj's every once and a while.

Alex had such a neat opportunity to visit our Sams club for a team meeting and show his gratitude for all that these awesome folks have done to raise funds for CMN which directly supports Primary Children's Hospital. What is more amazing is looking at the faces of these hard working individuals and telling them that they are making a difference in the life of a family right here in their town. We see Kathy , Donna and George all the time and really appreciate their efforts. 

This is Donna.. The top helper. 
This is Becky she is also at the top

SOOOOOOOO, I was up stairs when the whole fiasco went down so this is the story I got from a sobbing three year old. I was playing in the shower (fully dressed) I got Ryleigh's razor down... Then played some more, then was getting out of the shower and stepped on the razor and then BLOOD!!!! By the time we made it to the Instacare we had to soak off the toilet paper reminats. The towel is folded to the cleanest spot.. This is what had soaked through, I ended up just throwing it away.
 Poor little toe
So there is the tip of her toe, instead of sewing it back on, it was decided it would most likely turn black and fall off anyway. She has a nice wrapped toe for now. But she is healing nicely. She has had bronchial sickness and completely lost her voice yesterday. She seems much better today. I took her in for desatting last Tuesday, but the doc thinks it just a cold. I will just have to continue to watch her this yucky season and maybe have her start wearing her masks. It's just that time of year I suppose. 

Who loves sauce more than the chicken to dip in? THIS GUY!!! The chicken is simply the vehicle to the sauce, and let us not be discriminatory on which sauce we like most. NOOOO, we shall drink them all.

And wear them too, because what good is sauce if you can't take it with you on your forehead for later? There was so much mmmmmming and smacking of lips... And then I had to go and give him a sink bath like some lunatic who didn't want sauce in the car. The happiness ended..... 

Eden turned 6. She is such a delight. Eden is smart and funny and will tell anyone that she is the middle child. She loves having playmates on both sides. Eden is a great help at home, she is quick to get her jobs done and likes to play hard too. She is very creative and loves art. For her birthday she asked for Tri tip dinner and Chick-fil-a, she wanted an adult type (hard to color) coloring book and a volley ball just like Ry and she also really wanted a treasure box with a pad lock. Which she will be making with daddy at the shop. Eden is really taking off with her reading and loves writing lists and letters. Eden is growing so fast, she is the tallest in her class. We just love you Edee bow bee dee. 
 Making molasses cookies, easier without the sugar eaters, not nearly as fun without them.

Friday is library day... How lucky for us that they had these awesome Halloween backdrops

Don't-cha just wanna squish him.

Saturday, October 1, 2016


I never really know how to begin so let's just jump right in....

Jeff- Just when you thought his bike riding season was over, we forgot the other part(s) and races to accomplish. *sigh* the season truly is almost over.. Then it will be time to start training for next season. 
The most recent ride is called Salt to Saint and is a relay. It is from Salt lake to Saint George. He rode in a relay group of eight. This ride goes through the night as well. The scenery is stunning.

Jeff brought the Motorhome to our house the day before and let the kids sleep in it. They had a total ball. We went around town a bit too, just so we could get a real experience riding in one.
The Captin


All the little crew members

Ryleigh- Ry has discovered Volley ball is really her sport. She plays rec right now and is loving it. She also gets to play with her young womens group. I was so excited to hear her say she loved it. She has been practicing out in the backyard as often as she can and she had been taking her ball to school so she can practice at recess. 

Ry and I went to the Women's conference and then went to a late showing of the new movie Storks... We have never been to the new comfy seats and it was A-mazing..... The show was darling. I will fo sho get this for our family library. 

Alex- Meh, sooooooooo Alex has been fighting C-diff again. He somehow got Ecoli and that started his high quantity of stool output.. Which then always turns into a high probability of C-diff starting up. We are doing a Voriconisal wean and hopefully we are going to kick it again. We will also meet with Gastroentrology so that we can talk about his guts and how often he gets C-diff. Gator has had a history of issues at school. Daddy and Gator came up with a plan to help. For four weeks there were no issues. He earned, and will only get to ride this bike if the good behavior continues. 

He has had a few more opportunities to speak in behalf of Primary Children's Hospital. A crew came out last Wednesday for filming. It was such a neat chance to be able to share our feelings and express our gratitude. We won't have this one for a reeeeeeaaallly long time. It won't be until next spring. 

This is my favorite homework assignment in a long time... Let me translate for those of you who don't read third grade chicken scratch. 

If I had a hundred dollars, I would give it to Mrs. Biggs. (his third grade teacher)  Because she is nice and trust worthy. Why I think she is worthy is she is an adult. Not just because she is an adult, also because I know she will not spend it on crap. What I mean by crap, is candy and soda and chips and ice cream and last but not least cupcakes.
He just needs to keep working hard.... 

Oh, and this happened... We went to the safety fair at the school. Gator was not all that safe. GRRRRR.... He fell of the monkey bars and broke his arm. I of course wasn't super nice because I thought he was just being tired, whiney, and grouchy. We decided to wait until today to take him in, always waiting until we are sure it's legit and also I hate taking him in to germ infested doctors offices.

He gets to ice it like crazy and wear this brace/cast for a month. 

Eden- She is the ideal middle child, she patient and helpful and fun!!! She is still working hard in Kindergarten and keeps me busy as I run back and forth. She wants to try some art classes, which I have yet to sign her up for. There are good intentions. 
She loves having friends over. She is ALL about play dates. Her friends are so sweet too. They always let MayLee play too.

MayLee- Can't get enough of preschool. She is also loves friends and play dates...

Asher- I can't even keep up with this boy, he climbs on EVERYTHING... He climbs so often that I can't turn my back or I find him up on the highest item in the room. But we just love his squishy little face....