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.

Friday, April 22, 2016


I can hardly believe it. 
I wrote that number and did a double take. All throughout Alex's life there has always been a question of him making it to his next birthday. I am so grateful each year that comes to a close and for the one that's begun. 
On his special day he chose Chick-Fil-a lunch, which we brought to the school and stuffed ourselves silly. He brought push pops to his classmates.. I understand in a new way why he loves candy so much. (More on that later) 
He had a huge dinner at his favorite restaurant Texas Roadhouse. He had to sit on the saddle and the server was awesome and brought Icecream to us all.  He joined his friends at scouts and finished out the day.
All the pictures are on dad's phone..

The next day he was the speaker in behalf of the patients from Primary Children's hospital, at the Cardiac transplant 30th Anniversary Celebration at the State Capitol. 
It was an honor to sing the praises of the hospital we adore and the teams we love so much.

In between press conference's and the event in the evening we visited my sister, who will be uber embarrassed when I post a picture of her with all her probes, but looking absolutely awesome regardless. She is being evaluated for candidacy of a brain surgery that will end her seizures.. 

I better not unless I ask her.

And if we weren't (well I was) star struck by meeting Heidi from channel two, we absolutely ARE star struck by being around Paul Cardall. His talent at the piano is amazing, he played Gracie's theme. It's one of my all time favorites, I even had the pleasure of knowing Gracie before she passed away, for who the song is named. She was also a transplant recipient. 
  MayLee thought she should also "play" the piano in the state capital. Stress me out. I hope someday she comes back to really play. 

Here's the gang! We are so happy that Alex did so well. He gave his speech perfectly. Getting opportunities like these to verbally express our graditude is priceless. 

So even though this year wasn't a friend party year, it was a family party year. Gator chose classic skating!!!

On Monday Alex visited clinic. 
There was so much good news I could hardly stand it.
*Heart looks amazing on echo 
*meds are therapeutic
*he looks great physically, grown some and gained some weight

We don't have to make a trip back for 3 months for another clinic.
We don't even have to have a biopsy till January!!! Eeeeepppp!!!

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