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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.

Friday, September 12, 2014

Very small update of Gator Boy

Yesterday was clinic... Everything checked out. He is doing better on his higher dose of Milrinone. Its the small miracles that make our day.
We were really excited to see Dr. Molina this visit because the gummy hearts..(and other parts) finally got here..They were well received. In fact, the heart is the actual size of a newborn heart that they perform surgeries on. So awesome!

He happened to mention in passing that he experienced a pinching sensation or squeezing feeling in his chest a couple of times. So they decided to have him wear a 48 hour halter monitor. Oh man, we were all caught off guard when he started to cry. Things just caught up to him I guess. It was more then he could manage. One more darn thing to carry around. One more silly reason to feel weird or wired in this case. We know it's short term. We know it helps to better understand what his body is doing... But, it was just the last straw on a boy who has been super brave. He pulled himself out of his sadness and hooked up.
We push the yellow button if he feels an episode...


Good thing Elizabeth was there with a special gift. A 49rs hat and shirt. He is proudly wearing today.
He is so excited to show his buddies the Hansens next door.

Eden is so funny, she wants to be in on all the business.. The other day May was throwing a royal fit. I was trying to distract her from what ever it was that was causing her such grief. So I said.. Let's play eensy weensy spider.. Did the little game and got her happy, crawling spiders up her arm.. Washing them out.. Eden parks herself right in front of me, offers up a foot and says "mom, let's play that game were the go to the store, you know, the one were they go to war-mart" I died laughing when I realized she wanted me to wiggle her toes for 'This little piggy', who goes to market. 
She was proud as punch, when she made me laugh that hard. 

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