happy being trevy

Soooo... Halloween is shaping up to be more on the tricky side...less on the treat. Trevor has thrown up twice today. I'm happy to report we were able to get his meds in him. And they stayed down for several hours now. That's always my biggest fear. We've never had to use a rescue med. Just thinking about the possibility makes me queasy. And because I'm convinced the random vomiting in the hospital was seizure connected...I've been a little jumpy. But we've seen nothing (other than the vommies) that are making my seizure mommy heart squeeze. He's been a little grumpy. But not overly. Mostly he has been doing amazing. Truly amazing! Which is why it just stinks to have another set back. ::sigh:: Oh well... I suppose it's less of an issue now that I never got 'round to getting the kiddos costumes...

If you bought some on a whim... to enrich your budding brainiac... and aren't satisfied... The Baby Einstein Company is offering a limited time refund or trade for any dvds purchased between June 5, 2004 and September 4, 2009. Click here for full details. They are offering a couple different options. The one I'm leaning towards is the $14.99 hard cash refund. To ,of course, feed my newest obsession - Signing Time !

Do you know how difficult it is to pound out a post. With a 30 lb toddler on your knee. Cranky and clingy. Because he just had half of his brain removed . With the goal of gaining seizure control. To beat back the Monster inside his head. Which...according to the team of neurologists from Children's Hospital of Michigan...was attacking his developing brain more often than there are seconds in the day . And that after two rounds of Acthar . ( you can read about the hell we went through to access it for our son here and here ) The drug with the hefty price tag (click here if you're curious what 60k looks like...keeping in mind that a whole course runs about 125k) . The drug with the hefty price tag belonging to Questcor . You know...the ones who sponsored Infantile Spasms Awareness Week. Come again? You say...you missed it? Hmmmmmmm ... Could it be that it wasn't ever really about bringing awareness to the population at large. But rather to their target demog...

World Congress on Disabilities 2009 Educational Seminars Keynote Address : General James T. Conway, 34th Commandant of the U.S. Marine Corps, Thursday, November 19, 10:00AM EST Lennox-Gastaut Syndrome : Implications for Care Coordination Thursday, Nov. 19, 9:00AM - 9:50AM EST Blanca Vazquez, MD, Pediatric Neurologist, NYU Medical Center, Comprehensive Epilepsy Care Program Seizures & Seizure Management : Confirming Diagnosis and Assessing Treatment, Friday, November 20, 11:30AM - 12:20PM EST Steve Wolf, MD, Beth Israel Medical Center, NY Patricia E. McGoldrick, NP, MPA, Beth Israel Medical Center, NY Seizures & Seizure Management: Brain Mapping & Surgical Intervention Friday, November 20, 1:15PM - 3:05PM EST Saadi Ghatan, MD, Columbia University College of Physicians & Surgeons, NY Patricia E. McGoldrick, NP, MPA, Beth Israel Medical Center, NY Steve Wolf, MD, Beth Israel Medical Center, NY Hyperbaric Oxygen Therapy – its Efficacy and Safety in the Treatment of Cerebra...

Even though Trevor is doing really really good. It's a lot like bringing home a newborn. Or a kid who just had a hemi I guess. ::smile:: He literally requires constant 1:1 attention. While he can take a handful of steps unassisted. That's tops. Which makes everything in the house a Trevy head bopping hazard! And Jonathan going back to work today was a welcome to reality moment! For him too...I'm sure. More than ever I feel so thankful that we were Providentially redirected to put down roots here. In Rhode Island. Near my parents. We had no idea that our lives would move this direction. But Someone did! Grams has worked her schedule out so that she can be here with me every day this week. As I try to figure out how to balance the housework...and schoolwork...and therapies...and bill resolutions...and everything that fills your lives too! Except cooking dinner...because our All Star teammate families have pitched in to meet that need. Which is truly a huge hu...

Sinead...you were right. Doubt it'll be settling anytime soon. ::smile and sigh:: But at least we're hoooooooome. Not much feels better! We're all attempting to normalize again. Into our new normal. Toby and Bristel missed us so incredibly much. Probably more than we'll ever be able to understand. And it's been interesting. Toby...who vocalized missing us while we were gone...has been buried in his new gadget. A Nintendo DS. Which was an early Christmas present to help with the separation anxiety. But when he's not zoned into fighting off the bad guys on the little glowing screen...he's been moody. Gloomy and cranky. Which I know is just a reflection of the toll this journey has taken on his little sensitive heart. He's only eight after all. Processing all those layers of emotions...way too many emotions for an eight year old if you ask me...can't be easy. Although he's extraordinarily sweet with Trevy. Kissing him often. And ...