September 4: Day +64

Yes, that IS Ali's rainbow unicorn in my face and mommy's bag on my head...

I'm glad my browser auto-populates the date and day above for me when I type S-E-P... otherwise I would have no idea what the date is. I have lost all track of time here.

Well, we slept in after our raucous night at the fair. Turns out, Bella took it easy as well! She didn't need fluid last night for the first time in forever. She needed fluid tonight, so it was a short-lived holiday... hey, we'll take it. She is on day 5 of treatment-dose steroids, and we have been able to continually wean her down on her vasopressors, and her ventilator settings have improved tremendously. I think it's because Bella's tracheotomy surgery is scheduled for next Thursday and she knows it!

We told her her boyfriend left to go to 5D... no response.

We told her their poking another hole into her next Thursday... Hey, we're starting to see a response!

Everyone would really love to see her rebound and not need yet another procedure much less another hole in her, but if she doesn't bounce back by then, it's what we gotta do to get her off all this sedation, which at this point very well may be the cause of most of her problems. It's a reversible procedure, so it is a temporary solution, not permanent, but that also means she'll need another procedure to take it out! So, it's really TWO more trips to the O.R., but the breathing tube at this point is really causing Bella harm; she's got scarring in her trachea, and gum and tooth damage in her mouth.

So, she's got till Thursday to turn the corner. We can always cancel the procedure between now and then, but if nothing's changed by then... remember, living with EB means constantly choosing between two crummy options. I really hope we don't need the trach, but I know that it will allow Bella to get better much quicker, so it's for the best.

After we changed her head gear and leg dressings today, we headed out shopping for fall clothes. Yesterday was already colder than the coldest day where we're from, and we're not getting outta here anytime soon, so we bit the bullet and bought some more layers. Today's purchase should get us into or through October, then we'll need winter stuff as well. I have a feeling we'll be in parkas before we know it.

Tomorrow: knights, princesses, and fairies at the Renaissance Festival. For someone who loves castles and princesses as much as life itself (me - er - uh - I mean Ali), tomorrow should be fun-filled.

Oh, and I promise Fabulous Socks of the Day tomorrow!

Good night.