Home, sweet home

I'm sorry for being a delinquent blogger, I feel positively contrite about disappearing into the nebulous cyber space. In my defense, I've been trying to write an update since we broke out of the hospital, but I got slammed with the preparation for our impending Hungary trip and the resumption of our normal life. Did I just say normal life? Ha!

So last Friday afternoon we were finally discharged from the hospital, and when we victoriously stumbled through the door, we tried really hard to ignore the aftermath of the Mongolian invasion of our home that apparently took place in our absence. Instead of dealing with the consequences of severe home-neglect, we fed and medicated our new and improved Izzy 2.1 and then passed out in exhaustion on the living room floor. My highly conscientious, dutiful husband kept mumbling something about driving to the Druggist, our compounding pharmacy, to fill the two-page long discharge prescription, but I, like Eve in the Garden of Eden, suggested that we all take a short nap first and then walk over to the nearby CVS pharmacy, passing our beautiful beach on the way. 

Probably due to his altered state of consciousness, Phil disregarded the fact that his sense of time and planning surpasses mine even on his really bad days, and went against his better judgement when he agreed to my oh-so-tempting plan. And so it happened that we strolled to CVS, while deeply inhaling the salty ocean air and soaking up the California sun, only to find out that the pharmacy didn't have any of the medications we needed in the form and concentration they were prescribed. It was getting close to store-closing hours right before the weekend, so Phil switched into action-mode and pulled out his phone to call the Druggist (where everybody knows his name /and they are always glad he came), but first he gave me the head-shake and the "Dang it woman, I told you so"-look. Phil explained our predicament to the Druggist pharmacist and because they are a totally awesome small family business and because Phil spends an inordinate amount of time and money at their store, they expedited the compounding process so we would be able to drive over and pick it up right away. 

Unfortunately, we had to go to a third pharmacy to pick up the "TOBI", an aerosol antibiotic that the Bean needed for three more days. It took several phone calls to locate a pharmacy that had it available, another CVS a couple towns away. When we finally marched into the 24-hour CVS that held the Tobramycin, I felt like King Arthur in his quest for the Holy Grail. My empathy for King Arthur further depended when the funky-haired young pharmacist informed us that the TOBI was not covered by either our private insurance or Medi-Cal. "And why would that be?"-  I patiently inquired even though I was expecting some nonsensical answer. While I was wondering whether the youngling behind the counter was old enough to work with drugs and whether he meant to get that haircut, he enlightened us that the TOBI needed a doctor's pre-authorization. "Just out of curiosity, how much would it be without the insurance coverage?" - Phil asked knowing that it would be an outrageous amount. "Eight hundred dollars"- said the pharmacist and I wished it surprised us. 

A week later, the list of Izzy's daily drugs have significantly decreased: she is on a mere 6 drugs and 6 supplements. She is still doing marvelously seizure-wise, even though I did catch her seize a couple times. As a result, she already shows improvement in many areas: her fine motor skills have improved, her ataxia has decreased, her gross motor movements are not so stiff, her OCD-type of behavior has disappeared, her sleep has dramatically improved, she is more vocal and she laughs out loud. Also, I was finally able to wash and comb out the last bit of EEG-glue residue and dreadlocks from her hair. However, as I was combing through her thick curly locks last night, I noticed two large bald spots hidden away on the back of her head. After a brief burst of panic, we concluded that the bald spots were probably caused by the EEG. Or, a more accurate account would be that I freaked myself out by running through highly unlikely horrible possibilities in my head, while Phil remained cool and did a quick search on baldness and EEG's. 

Oh, and have I mentioned that we are leaving for Hungary on Thursday? Yes, we are taking the Bean, and yes, we are mildly insane.

The new and improved Izzy 2.1: