To scream, or not to scream?

Obviously, I've wanted to post since my last entry, but time keeps running away from me :)

Jade was released from the hospital last Tuesday, a day or two earlier than anticipated (small Yay!). She was completely weaned from the diet as of Monday and they started her on Pediasure. It took a bit of time for us to get used to her new diet. No more measuring, sticking to strict food requirements or water intake, and no more oil! It's been so much easier and I'm pretty sure she is tolerating the Pediasure well enough by now. She's been eating more baby fruits by mouth too this week. But, the best part is that after she got home, she woke up more and is much more interactive with us! Not only was the diet changed, the doc stripped her of her Zonegran - cold turkey. Just in time it seems, since the FDA recently announced a major side effect in pediatric patients, metabolic acidosis. So, now she is on Keppra, Klonopin (nighttime only), and a hefty dose of Phenobarbitol. I wasn't keen on using this last med, as it sedates and causes more motor problems (like she needs anymore difficulty in this area). But, it seems to be working well. Her seizures are so much less severe and lower in number. Pre-admission, she was having no less than 20-30 seizures per day, with a lot of them lasting 5-10 minutes each. Now, she has around 5 brief (3-10 seconds) tonic seizures per day! It's weird.

In retrospect, she should have been admitted a LONG time ago for her seizure activity. That's the hard part of circulating her among more than one doctor and nurse in the practice. Through it all, it seems that this treating doc (my preferred doc) is/was the only one to make the correct decisions on her behalf. I'm still very frustrated that I (and they) weren't more aggressive with her treatment. I honestly thought her level of seizure activity was the norm. Now, I know better.

Not everything is roses since our return, though. It seems she is developing an infection in both of her big toes from ingrown toenails. I am pretty sure she is predisposed to this happening as this is not the first time. However, this time around, it is serious enough to warrant an antibiotic and warm foot baths several times a day. The doc on call instructed me to take her to the ER tomorrow asap if it has not improved by then. Fortunately, I have an antiobiotic prescription from around Christmas I can treat her with until we can get in to see her pediatrician. He's on vaca right now. Why do the big things always happen when he is not around??!!

I am also at wit's end with the house. We were really really really hoping to get the CO yesterday, but there are a few things that need to be completed before that happens. Even if we do get the CO next week, it will be at least another week before I can move anything in. We were supposed to have sod delivered and put down today. I stopped by twice, and NO ONE WAS THERE - AGAIN!!! Grrrrrrrr..... 

Thank God for wine.