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 ...

That's right. You. Sitting there glued. To the computer screen. Getting your Trevy fix. You who hasn't been able to tear your eyes away. The one who checks back here gobs of times a day. Hanging on every post. Especially the dripping with drama or funny posts. Because you need to either laugh or cry alternately. Just like me. And somewhere...sometime...somehow...over the course of these past couple years... ...you found yourself here. Reading about me. About my family. About my Trevy. And slowly you were drawn in. Until you couldn't help yourself. You were head over heels. Unashamedly addicted. Maybe we connected in a support forum. Perhaps we're old college friends. I know we have family following. Hi guys! Some teachers and therapists. Maybe even a medical professional or two. Perhaps our kids play ball together. We might be FaceBook friends. Or you could be a friend of a friend. Even a complete stranger. But to us... you each have a very special pla...

To send bills BEFORE the child who just had half his brain removed is even discharged! That's right, folks. Not only am I so exhausted I can hardly keep my boot-tay on this chair. I also have a pile of bills. Bills that were WAITING for us. Now get to be exhausted AND I must sift. Which really means call the various billing (lairs) departments and see what hasn't been billed correctly. Or what won't be covered. Sweet! Can't wait... Oh...and on a quick happy non-sarcastic note... Took Trevy to school today. I know...I'm slightly off my rocker. I've come to terms with myself. Buuuut...not only did his teachers smother him in love and hugs! He did amazing! Even took three solo baby steps! Which is just heart-warmingly fabulous... But I still don't wanna make those calls.

First we sleep. Then we clean like maniacs! And after the dust has settled... Mommy will find time to blog. Cross my heart. When the dust has settled...

'nuf said!!!!!!!!!!!!!

I felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...

Weeeeell ... Trevy made it through the night with no throwing up. And no seizures. All smiles and eating like a champ this morning! And not to be too cocky. In fact...I wish I had nothing to be cocky about. I wish he'd never had that stupid seizure. But he did. Which opens a window into a reality I wish was behind us. Being studied under a microscope in some lab somewhere. Because it was sliced out...instead of still being inside. And while I believe with all my might that surgery was the best (the only) choice for Trevor. I am not so certain that means we'll never be dealing with seizures again. But I am, however, very inclined to believe I was right. That the throwing up was connected to seizures which was connected to the WAY TOO low dose of seizure meds . Resolve the seizure meds ...brings resolution to the seizures...which in turn brings resolution to the throwing up. I see a pattern. But hey? I'm just The Mom you know. ::wink:: Anyway... The shi...

Not Trevy. Although he's done his fair share of smiling today! Even at hospital staff...when he's not screaming at them for poking him or pulling stitches. But it was another guy who laughed. Dr. Rockstar. When I told him that... Today is wonderful ! But a few days ago? I was suffering a nasty case of Buyer's Remorse! I don't think he's ever had another parent voice that to him before. It was kinda fun...

First up... Jonathan caught him mid-smile this morning! We haven't seen a happy face since last Tuesday! But this morning...we put Grams on speaker phone blowing him kisses and got this... So here ya go... the haircut. Whaaaaaat??? You didn't really think I was gonna buzz him did you??? A glimpse of the boy from before... The boy who loved his bath! And still does!

Sometimes I hate being The Mom . If I could turn back time...I would totally be wearing a white coat by this point in my life. To prevent the raised speculative eyebrow look from the white coats. And they would be forced to put some weight in my mommy-sense because I had the white coat to back it. But alas...I swear they think I'm not just The Mom ...but worse. The Crazy Mom . Because I dare to question the possibility that the random throwing up might be more than random. That it might be seizure related. Sure...sure...I know throwing up seizures are rare. But post ictal throwing up isn't. Although I was informed (with a straight face no less) by Nurse Neuro-Surge today that post-ictal vomiting is a fairy tale. Jonathan swears the steam from my ears was visible as I in no uncertain terms told her to educate herself more fully before spouting off. Particularly to a mother who just chose to have half her son's brain removed. And can cuss you out in Swahili. ...

Everything happens for a reason. There is a reason why we weren't already discharged. Partly...I believe...so Julia's mommy and I could grab a cuppa Biggby's together. Lisa...I think you guys should consider moving East! A cute little cottage right across the street from us is for sale... But it was also partly because Trevor had a breakthrough seizure. If we had left yesterday or today...this would have happened on the road. I hate myself for missing the ques. He was acting weird. Off. Kinda scared. Unsettled. Crazy eyed. I've seen all these things before. And I still missed the signals. And left him. To run downstairs and grab Jonathan a coffee. So I wasn't there. I hate myself for that too. Poor Jonathan. To be alone. When the Monster reared it's ugly head again. So much for slayed. Now he has the fearful eyes. Although things have settled down some. Couple tidbits... It was NOT an Infantile Spasm seizure. I actually had to send a desc...

Trevy hurled again this morning. While I was trying to give him his new AED ( Trileptal ) by mouth. Because we have to start somewhere. And as Dr. Neuro -Surgeon was making his rounds. It's SO flippin ' frustrating. Trevy has only thrown up once prior to this. He just was never a retch-y kid. No reflux. No newborn spit up. Notta . And to see him spewing is hard. On the heart...because even though his eyes are bright and lovely...he's so weak. Hard on the hope...because I want to go hoooooome . Hard on the temper...and everything in between. While some things on this side of the surgery are easier to deal with. This is not one of those things. Which is why I told Dr. Neuro -Surge that I'm ready to just g-tube him. And go home. He asked if I'm okay with dealing with throw up once a day...at home. I said...I can handle it at home just like I handle it here. Heck yeah...I'm okay with it. Sure...I wish we didn't have to play catch the fount...

I knew better than... to start gettin' my hopes up about going home. This weekened. Eventually they'll get sick of us and kick us out. But I shoulda known that they wouldn't until he can take his meds (and keep them down) by mouth. Before the discharge papers are drawn up. But still...I went ahead and got all giddy. Did the laundry. I also shoulda known better than to wait. On getting all the new meds in order. I have all the old ones in excess. I was prepared on that end. But I am SO kickin' myself. Cause here it is. Friday. When everything shuts down for the weekend. Including the nurses who have access to free samples...which are paramount to little hemi kids hauling it half way across the States. To Home. Because their insurance companies have weekends off. Which means all authorizations must wait until Monday. Ironically...when Nurse Free Sample will be available. ::sigh:: Sometimes I hate the dance. Especially when I forget the foot work. But I suppose Jonath...

Ooooooooh...I've gotten opinions on the subject. Trust you me. And Ken ...dude...you were right! It's a matted dried bloody rats nest in the back. It'll be a chore gettin' that out. Interesting note. The split has been pretty even. Daddies vote buzz. Mommies vote don't you dare. Anyway... I mentioned to Dr. Neuro-Surgeon that I wish I'd asked them to just shave the whole of it during surgery. Especially since the incision is right down the middle...ruining any mohawk chances for sure. He laughed. And then informed that they wouldn't have anyway. The whole risk of slicing out the wrong hemisphere thing. I thought he had a point there. Buuuuut...I later convinced a neuro-surge nurse to bring clippers up and help us be done with it. I was wishy-washy all day long. Fiddling with his hair in an attempt to see how he'd look bald. And by time she finally arrived...clippers in hand...I just couldn't go through with it. I just couldn't! Of course...I bla...