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.

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....