We just got moved to Los Ninos Thursday and they're already trying to discharge us tomorrow! We haven't even gotten our equipment for her yet! I won't let them discharge us until I feel 100% comfortable on all her equipment. I think it's more or less the insurance discharging us than the place itself. Oh well, though, you gotta roll with the puches, right?
Other than that, Harley is doing great! She stopped throwing up, at least for a few days now (we think it was because of her medicine Clinazapan [probably didn't spell that right, but I tried], it was a pill that dissolved under her tongue and once we started disolving it in water and giving it through her G-tube [which was 'okayed' through the doctors] she stopped throwing up, it seems). Also, we FINALLY had her re-evaluated by the speech therapist at Los Ninos and they confirmed that she CAN swallow! We can now give her ice chips (even though she didn't like cold things before this, but maybe she'll give in a little since the only other thing that goes in her mouth is a toothbrush). It's a small step, but an important one showing that she's improving towards being able to eat (or at least drink her formula from a bottle)! How exciting is that!?!?
I know this is going to be extremely hard caring for Harley at home now, but she'll appreciate being in a familiar environment and being able to just relax. We're in the process of setting up our house for her (moving her crib into the family room, getting rid of all the clothes that are too small for her that we started to do, but got lazy and stopped, and also get rid of some toys of her's- we're not mean, she just has AAAAALLLLLLLLLLOOOOOOOTTTTT of them!) so it'll be move convenient for us to take care of her, and so she can hang out with us instead of lock herself up in her room! (Lol!)
But seriously, it'll be nice once we're all home. I know it will be alot of exhausting, never-ending work, but who said being a parent was easy? I'm not a hero like firefighters, police officers, military men & women, doctors, nurses, etc. I don't have an extrodinarily big heart like Mother Theresa. I don't have patience like a saint (if you know me at all I've probably blown up on you- I'm that bad sometimes!). I'm just being 'Mom'. I see my baby girl needs me so I do what I can. I can't perform a miracle to make her brain grow back so she can walk and talk and play like normal again (though we all wish we could), so instead I am her advocate. I look into her eyes, almost straight to her soul. I see if she's mad, I listen if she swallows (when everyone else says she can't), I talk to her and hold her and find out what she wants (as best I can) and I let everyone know. It's the only thing I can really do for her (besides research everything until I stumble upon something helpful and find out the doctors are 1 step ahead of me), so I'm going to do it!