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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.

Thursday, February 25, 2016

Checked off the live list.

Our family finally made it on a trip.
There was so much build up and pre planning. If you remember we had originally planned to go on this trip in November. But Alex needed time to heal.  We had an absolute riot,
Before we went the kids earned Mickey Money.... I bought things they could use at Disney or in the car. I think they really liked and responded well to this incentive to be good. 

We also had this darling countdown my cousin JJ made. She sells them in her Etsy shop. The little girls really liked being able to see how many days left....

I packed each of the four younger kids in Ziplock bags, each bag had an outfit, undies, socks and any hair bows that went with that outfit. We will definitely reuse this packing stratigy for all our trips. It worked out so great because we originally wanted to wash clothes mid week, but the washer at our hotel was bad news with weird hours so we actually couldn't wash like I wanted. I can't believe I didn't get a photo of my awesome packing. Shoot darn. This was when my OCD really showed. 
As we are driving out of our neighborhood, MayLee looks out the window and says "Are we in Disneyland?"  Both Jeff and I bust up laughing. We were sure it would be a very long drive.

We traveled to St. George the first night. Got to out hotel a little later than we originally planned, but we made it. 
The trick with taking kids with medical needs on a vacation is that you have to be even MORE prepared. So we had medications, plus extras, oxygen, nebs...
Lots of lugauge for a family of seven. 





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