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.

Wednesday, December 9, 2015

Seriously always catching up!!

I guess it comes with the territory. Six other persons occupy my time...
Our littlest man has me busy trying to feed, play, and protect him from the anslaught of smoochies he gets. 

For family night we wanted to ride the Farris wheel at Scheels. Ry doesn't do scary bear pictures anymore. These three were game..grrrrr
Thanksgiving was spent with family. We all even made it to Idaho which we haven't done since May was a baby.. 
She enjoyed hiding from me at The Army Navy surplus store. She has been off of oxygen during the day since November too!!!! We did an overnight pulse ox test, however her results showed she needs the support at night. 

We stayed in a hotel because we are such a big family now that we could certainly overwhelm anyone and because it's just so darn fun. This is a makeshift bed for Ashy. I scootched the chair all the way against the bed and it made a perfect little place for him. 
Many of you know that Alex was the "lights child" at The Festival of trees. He switched on all the lights and gave a speech. But not many of you know that he got to cross another item off of his 'live list'... I have amazing friends who happen to own a limousine. Tom and Kim Sanderson arranged for not only Alex to go in the limo, but they picked up the girls as well and went to get dinner.. They all felt like celebrities. Alex arrived to the south town expo in style and we were greeted by a parking attendant who was certain we were going to blind her by our fabulousness (if that's not a word, it is now). One of the reasons I adore Tom is his ability to defuse tough situations, he had us rolling with laughter in the back while he explained to the attendant that he had a very special person and the star of the show in his limo. The attendant was NOT buying it. She was not happy about sitting in the box outside.. 

What made everything even better was that Miss Jen and Mr. Jake were in attendance. And Miss Katie was also there. For being the boss of Primary Children's Hospital she isn't stuffy or bossy at all, she is fun and nice and easy to talk to.

Alex did an amazing job. I am so proud of him. 

Monday, December 7, 2015


I made a roast, potatoes, carrots and onions in a crock pot with green salad, jello salad and corn. MayLee is one of my picky eaters.. Usually when they ask what's for dinner I get all super excited and say. "Well, you get two options for dinner.. First option is ______, second option is starve." 

I helped load Mays plate. She was specific in telling me she didn't want salad.. She ate up her dinner.. Hurray!! Then daddy let her have a bite of his salad, really a bite of the sharp white cheddar cheese smothered in blue cheese salad dressing.. She LOVED it. She ate all the rest of his, asked for seconds then said this.

May-"mom, do you have any cheese?


May-"pass it over" (also sliding her plate over so I knew she meant it) 

I guess that means I don't get to eat mine and blue cheese dressing is a hit. Alex drinks his:)