May 28th

We FINALLY got Harley's equipment yesterday (feeding pump, suction machine to suck yuckies out of her mouth/nose & nebulizer for her breathing treatment) and I got (briefly) trained on them. To be honest, they aren't as difficult to work as I thought. The suction machine and her nebulizer are just air compressors (the nebulizer is EXACTLY like a little air compressor my dad has) and the feeding pump is EASIER than the hospital one, so I'm set! Los Ninos is getting everything ready for us to leave, too. They've set up her follow up appointments (cardiologist, neurologist, etc.) and for 1 more test (swallow study- to see how likely she is to aspirate [food/ drink go in her lungs] while eating). Everything's set... except her meds.






Harley has 12, yes 12 prescriptions. Only 4 are covered by insurance. Most of them are injectables (we need needles to draw them up, but ultimately they go in her G-tube) and insurance doesn't like to pay for those. So, Los Ninos is doing all they can to get them covered and to get us on more programs that can help us out. They've been really great to us at Los Ninos. The only complaint we've had about ANY of the staff there is (and I quote Cameron): "Aww, this nurse makes us wake up in the night (for Harley's meds)." And I can live with them making us be responsible! Anyway, the new 'release date' that we're shooting for is early next week.






We FINALLY got our carpets shampooed (is that how you spell shampooed?), actually Cameron rented a Rug Dr. and did it himself- he didn't know it'd be that much work! We threw out a couch to make room for Harley's crib in the living room and now we're just looking for a tall table to put her meds on when we're getting them all together. In the meantime we'll just use a TV tray. Our house is close to being ready!