So we are still at Los Ninos. Her meds are finally under contol (covered by insurance and all) but now they are worried about her throwing up so much (it's anywhere from 1-4 times a day it seems). Now there's talk of putting in the J part of a GJ tube (a tube that will go from her stomach to her intestines, basically so she CAN'T throw up). Doctors orders are in to talk to the surgeon who did her G tube (see if it's been long enough for the G part to heal).
On top of the throwing up, Harley now has a staph infection in her left eye (I didn't know that was possible!). We've been putting eye drops in (3 times a day) and that has seemed to have helped (otherwise her eye gets really crusty; has even crusted shut a few mornings).
On top of the staph infection, she also has an ear infection in her left ear, too. Apparently kids who throw up often are prone to getting ear infections. Our doctor said a study was done where they found stomach acid (or some enzyme from the stomach) in kids' ears who threw up alot (like, if they're sick and throwing up constantly, more than once a day or so). So, now we've started an antibiotic for that.
Harley's appointments to see all her doctors have all been set up and she's started going to them. First one was on Wednesday for the geneticist. Not much happened, they checked her out and had Cameron fill out paperwork for the first in-office visit. Dr. Amatto (geneticist) also had Cameron fill out paperwork for us to get genetic testing done, too. Not really to see IF we are carriers or have Alpers Syndrome (we obviously both are carriers and if we had Alpers we'd most likely have showed symptoms by now) but mostly for informational IF we have future children (it's looking like no at the moment...).
Harley had a swallow study done Friday, too. She was sat up in a therapy chair (like the one we have for her at Los Ninos) and given baruium in different consistencies. First they did the consistency of honey (with chocolate flavoring), which she swallowed, but aspirated (it went in her trachea/lungs). Next they did the consistency of pudding (tasted apparently like marshmellows...) which she swallowed a little bit of, aspirated a little (not as much as the consistency of honey) and kept the rest in her mouth. I thought she was choking! (But we were watching her airways on X-ray and could see she wasn't.) They used a syringe to take out what she wouldn't (not couldn't, WOULDN'T) swallow and when we got back to the hospital I suctioned out the rest. She is such a chipmonk! (Like me, I guess...) She kept most of the stuff in her cheeks! I made sure to brush her teeth really good, too.
Other than that, Harley's doing okay. I think she's ready to go home, though. I think we're all ready. Once we get her home I think she'll improve some more. It'll let us all relax a little bit and just enjoy being a family and spend more time together.