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.

Wednesday, March 26, 2014


We have a friend who is single (and available) she was helping me out a little this week. We ran to Lowes to get some parts for a broken toilet handle. (My boyfriend/hubby usually manages all things home repair. But since he is at a convention... I think for wood?? I am playing the role of master plumber with Angie as my supporting actress) 
Car rides are fun because you can crank up the 'good' songs and chat inbetween.. Well Eden must have been thinking about this a while because she says to Ang, "You don't have a Babe, do you Ang?"  Angie thinks about it for a while and says "well, I don't know" Eden thinking even harder says "nope, you don't have a Babe, daddy is mom's babe." But then, not wanting to hurt Ang's feelings says "your doggies could be your babes". I had a great laugh about that because she used to call everyone's husbands the daddy. So it would be.. You don't have a daddy[at your house]... It was so confusing to her little brain that now she refers to husbands as Babes! 

May has now begun telling me she has an Eeeeeewww! Which means please change this ick on me. 
Oh, she doesn't love her oxygen all the time. But who could blame her? She ripped it off and I had to almost hog tie her to take off the old tender grip (little circle cheek sticker) then clean her skin, then apply the new tender grips, and last get the cannula back in place. I chased her around while she ran free for a little minute. 

Sorry for the blur.. Wiggly and aware that if I hold her long enough she will be subjected to the cannula. 

Those are some nice dark lips.. They should be the color of mine if she was oxygenating her body correctly. Also, see how dark her nose looks? This is another indicator. It's kind of hard to see in the other picture, but her feet turn a darker shade too. Lower extremities don't oxygenate if the body is working to push oxygen to major organs like the heart, brain, liver, kidneys... 
Some interesting things to see if you know what to look for. 

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