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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, November 6, 2009

some-a diss and some-a dat

So what is it like now that Gator is bigger (he just weighed in at 28 lbs) and stronger. It all seems normal to me. He has meds every morning and night. We wash hands through out the day and we stay home more in the winter. We wash his bedding a lot more, I have it in my head that helps him to stay well.. His room has it's own home health... It is kinda interesting I guess. These things that seemed so weird to me before has grown into our lives and is all he knows. We check his SATS some times when he looks blue and we make sure that we have oxygen on hand. I guess what I am trying to say is, when we first started all of this it all seemed scary and overwhelming. But it all changes over time, as you adapt, form new habits and just kinda get used to it all... I wish someone was out there to tell me that when we found out about all this. I think it would have given such hope...

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