The report of my death was an exaggeration

I'm still alive and well, living the exciting, glamorous life of a privileged Orange county housewife who doesn't have to work but can freely indulge herself in managing seizures, mucus, tube-feeding and therapies all day long, or have long, frivolous conversations on the phone with delightful insurance agents. I wish I could tell you that the reason why I haven't blogged for almost a month was my increased busyness due to Izzy's miraculous jump in development after her VNS implant, and I've been just too occupied with chasing her around on the beach, taking her to choir practice or riding unicorns over rainbows. Unfortunately, Izzy is still having more seizures than you would wish upon a child molester, usually hundreds a day, which continues to interfere with her development and my psychological well-being. On the bright side, the VNS keeps Izzy out of status epilepticus and it trains her brain not to seize. I also believe, that it was the VNS that kept Izzy from spiraling into 6 or 7 full-blown grand mal seizure on Saturday when she had a high fever. She stopped breathing, stiffened up, her eyes got big, her pupils got huge and she had a frightened expression on her face - they looked like the beginning of her big tonic-clonic seizure a couple months ago.

While not with the aforementioned utopistic activities, I have been busy nonetheless in the past months with house hunting and transitioning Izzy into the school system as she is turning three years old (whaaat???!!!) soon. The transition involves assessments and evaluations by the school's speech therapist, psychologist, nurse, developmental specialist, and janitor, who upon gathering information will all put their heads together and give their recommendations for Izzy's placement and IEP in January. Izzy has a long history of assessment-dodging: whenever she suspects that there is an evaluation of some sort taking place, she clams up and carefully hides all her skills. Since her special gift of skill-hiding has made me look like a desperate mother in utter denial before, I got smart and now I provide the person who is carrying out given assessment with accurate documentation. That is, I whip out my iPhone and make them watch video footage of my sneaky little Bean as she is being engaged in the various activities that she is refusing to demonstrate at the moment. Of course the godforsaken seizures just make matter worse and hugely undermine the evaluation process. It kills me when she has a seizure in every 10-15 seconds and her charming, goofy self is suppressed and buried under these evil electric brain storms.

As for house hunting, we decided to stay and keep renting the condo on the beach. I know, poor us. As all the foreclosed people moved into the renting market, the prices skyrocketed and went  from high to ludicrous. We did find a gorgeous rental that fulfilled all the criteria we were looking for but the $2550 price tag on a 2 bedroom 1.5 bathroom place made my buttcheeks clench. So I'm still dragging baskets of clothes to the outside laundry room and share the washers and dryers with the other tenants, that is if I remember to put money on the laundry card. On the flip side, I can still take Izzy down to the beach in 5 minutes, a beach that takes my breath away every time.

What else is new? Oh, the Bean is on a diet, because she has gone from black bean to kidney bean. During our last visit, the GI doctor showed me Izzy's growth graph, which was gently sloping upwards until July, then it drastically shot up in a straight line. My little Izzybee has gained 3-4 pounds since July, and if she continues to gain weight at this rate, she will quickly become obese. Because at 3-something feet she is also tall for her age, she is not overweight at this point, but nevertheless she is the size of a 4-year old boy. And while my growth graph also shows a slight upward curve, I'm still 5"2 and 109 pounds on most days, so my lifting power is limited. The GI doctor speculated that the VNS made Izzy's muscle tone more relaxed and she has stopped moving constantly, which consequently makes her burn less calories. Another factor is the cyproheptadine, the medicine that does wonders for cyclical vomiting, but at the same time is also an appetite stimulant. One of the benefits of tube feeding is that I am the one controlling Izzy's caloric intake and I don't have to worry about her munching on junk food. I do have to worry about, however, a super cute, pouty-lipped whiney Izzy kicking me out of bed in the middle of the night because she is hungry. I've been watering down her Pediasure and adding pectin to her second dinner to trick the hunger center of her brain, and so far so good.

The most exciting news is that Phil's parents are arriving tomorrow and after 4 years, we will spend Christmas with family.