happy being trevy

Hmmmmm... Sooooo... I've heard through the grapevine today that I haven't been posting enough. Which is taboo if one aspires to be a BlogStar. It's, like, blogging 101. Keep it short. And keep it often. Lucky me. I have no desire to achieve BlogStar status! I is what I is. And these days that is... EXHAUSTED! And trying really...really...really...really...hard. To find my balance again. I actually found the time to exercise once this week! Which is not even close to often enough. But still. Its something! I was going for twice this week. Buuuuut... that was thrown off when Dr. Neuro ordered a 48 hour EEG. ASAP. Because Trevor had two seizures. Not big bad scary seizures. Nope. More heart shattering than that. His seizure looked like the ghost of what we thought we left in a Detroit path lab...coming back to haunt us. Yes. I saw a spasm. A spasm. Not a cluster of spasm s . Which is positive. Except my heart wasn't prepared to see that again. After so long. When I saw h...

My attempt at a Christmas Card snapshot... Hey now...stop that laughing! I'd like to see your best attempt at getting the three of them in the same frame! His attempt at looking imp-ish... Trevy's French Kiss... Bristel signing "stop"... ...she wasn't diggin' mommy and the camera. Toby has a sudden obsessive interest in birds... In a rare moment...Toby let me photo shoot him... I especially love the above! No worries, Katy. More to come later... ::smile::

you find Grace, Peace, and time to reflect and... Count Your Blessings Happy Thanksgiving from our home to yours...

So let me tackle the who's the puppy for topic first. Especially since I've had SO much feedback. Can you believe over 100 votes?! We do love our opinions...don't we?! ::wink:: Everybody can relax. The puppy will be for the WHOLE family...not just Trevy. Don't you know me well enough by now to recognize a manipulation tactic when I type one? I was simply trying to inflate the "yes" vote by playing the "I survived radical brain surgery and totally deserve a puppy" card! By the way...daddy finally said YES! ********** On to the next topic... The Questions dum...dum...dum...dum...duuuuuuuuuuuuum Oh have we ever been asked some interesting questions since Trevy's surgery. For instance... Is he having a bad hair day? Or how about... Will it grow back? Ummmmmm... it as in his brain? Yes! Hmmmmmm... Wow. I'm not really sure how to answer that... I don't know? Is he half lizard? NO it won't grow back! And yes ...I was rolling my eyes! A ...

If you had a friend... who just happened to have THE cutest puppies in the world. The kind of puppies that make you go "gaa gaa" every time your children convince you to take a field trip to the pet store. The kind of puppies that don't shed! But do cost money (inserted for Jonathan's benefit...cause the rest of the fam doesn't think about these things) to care for...among other annoyingly cute puppy habits! Like...ummm...potty-ing in the house and chewing up carpets. You know...a lot like Trevy! Who...by the way...would adore a puppy for Christmas! All those puppy details, yes... BUT won't cost you anything to adopt! Because you have a friend who has offered to give you one for FREE!

I woke up in a mood. A funky. Cranky. Grrrrrr. Mood. I promise you Toby and Bristel wish it was a Grams day. Trevy is still immune to any sort of crankiness. By that I mean...it's hard to get mad at him. What with the scar parting his hair and all. Bleh! It's this mood thing. I just can't seem to shake it. Cause even though I say "I woke up" with it. Truth is...I've been cranky for days now. Today just seems dialed up a notch. Didn't help when I tried calling the hubs to talk about it. Not only wasn't he helpful. He didn't have time to not be helpful. Which just further pi$$ed me off. I've spent the better part of the day mulling. Trying to figure out what the heck is wrong. And honestly...the last thing I want to be doing is sitting here. Blogging. It doesn't feel comfy. It feels forced. Like I've lost my mo-jo. Have I? Lost my mo-jo? Oh good grief. Wait... ...hang on... Almost done licking the crumbs from the bottom of the Originals C...

To start thinking about gift ideas for teachers...therapists...acquaintences... In fact...I put out a facebook update asking for thoughtful, creative, sweet, and BUDGET FRIENDLY ideas. And loved some of the feedback SO much that I'm going to share the first three today! With one itty bitty string attached... if you have a creative idea you'll share it with me either via email or comments! ********** Cake Balls (by Andi ) Bake a cake. Crumble the cake into a bowl. Add the frosting you would have frosted the cake with. Squish it all up. Roll it into little truffle sized balls. Stick them in the freezer. While freezing, melt some chocolate or candy coating in a double boiler. After the balls are frozen a bit, pull them out. Roll them in the chocolate. Let them sit to harden. You can sprinkle them with stuff while the chocolate is still gooey too. You may have to keep melting the chocolate. It can be a little time consuming, but they are so good!! Since I didn't have a lot o...

I'm convinced that the drugs have done it to him. Built up a high tolerance to sedatives. I mean, he's been on hard core seizure meds for how long now? Yeah...exactly. Which is why I'm convinced that he's untouchable with the sleep meds. And has a tolerance of steel. A tolerance that leads to events like today's. See...we were just supposed to be there for an easy peasy CAT scan. Not an all day event! Nothing to worry over. It was simply follow up stuff. The only reason I'm even a smidge of curious about the results is because Trevy has been VERY sensitive to all things head-ish. He hasn't been acting like he's in pain. And no throwing up since that virus made rounds. Certainly no exhaustion. It's just not pleasant putting shirts on these days. Or pouring water over his head. Things that Seizure Trevy didn't mind at all. Seizure Free Trevy...not digging it. Let me take this opportunity to insert (for you, Ken ) that otherwise...he is doing AMA...

You know what they say... better late than never! Aren't our pumpkins super cute? Super Mommy fell down on the job...and if it weren't for Mrs. Coach's pumpkin surprise bags...we wouldn't have had any! ::gasp:: See...I am really not that super! And thank you Mrs. Coach for helping me keep my image! A friend gave Bristel a beautiful Belle costume! Cute-a-licious! Toby wore his skeleton shirt from last year... ...but he's not into having his picture taken anymore! Bristel on the other hand... We were invited to a special Halloween party... ...but tricky Trevy was very sick! Soooooo...we ended up just walking up and down our street. Our neighbors happen to be VERY generous! Oh...and Trevy wasn't really in the mood for dressing up OR picture taking. But I dressed him in head to toe grey sweats... and called him a cloud!

I am alive. For the curious. Just super duper busy. As you can imagine. Did you know I home school? I know...I know... I'm a little bit loopy. ::smile:: I never imagined myself being one of them . In fact, Toby went to an International School while we were playing missionary in Africa. But it was pricey. Which is how my mind ever even started down this homeschooling path. Before I even had a chance to make up my mind...Providence did for me. And suddenly I was expecting our 3rd (otherwise known as last!) and we'd be heading Stateside right in the middle of a school year. Toby has a shy streak. And there was no way I could plop him into a new environment like that. The rest is history... Sorta. Even though I have days when I look longingly up to the top of the hill. Where all the little kids gather...knapsacks on backs...waiting for the bright yellow bus. Most days... I don't. I love being a mommy. I love pouring my life into my children. I love seeing thei...

I don't have tons of time to (do much of anything really) read through all the emails filling my inbox from the various IS forums I belong to. But this one caught my eye...and is being shared with permission of the family. ********** Hi all, Has anyone else had trouble getting ACTH? We had it prescribed on Monday . On Tuesday our neurologist office faxed everything to the insurance company and to Acthar Support and Access Program. It seemed like all was moving along and we'd have the ACTH in hand on Wednesday or Thursday at the latest. Then we got called yesterday that there was a delay with the insurance ... that it looked like they were going to cover it under major medical (with a $5200 copay on our part that "should" be picked up by a national organization for rare diseases??) but that it hadn't been approved yet . I have had 8 phone calls today between the ASAP program and the insurance company and nothing has happened. The nurse wh...

Trevy ...all my kids actually...has always been a chewy kinda kid. In fact, ages ago our EI bought him one of those fancy shpancy super expensive oral sensory kangaroo things. They vibrate to provide more oral sensory feedback. Would have been great. Except Trevor figured out shortly how to unscrew the thing and chew on the batteries instead! Since his hemi Trevy is even more chewy! So Grams, the kids and I went on a chew toy expedition yesterday. And found this wonderful little Infantino number at our local Walmart ! (ours is purple for epilepsy) I LOVE it! Same concept as the super expensive sensory catalogue gizmo. Except no special needs label so you can purchase it for MUCH less! $5- ish dollars. Plus...it's all one piece so nothing to unscrew and choke on! I recommend this product for any parent of a chewy kid!

So I guess the good news is... at this point I'm convinced the hurlies are viral. Rather than pressure. I woke up smack in the middle of the other night with the room spinning. Literally. It was the weirdest feeling! The security lights peeping through the curtains began forming a swirling halo around my head. I tried laying back down and closing my eyes. Didn't much help. My world was still rolling. Reminded me of Aunt Deb who has been dealing with this vertigo feeling for awhile now. Except mine passed. And the next morning I was fine. But Aunt Deb...I can now imagine what it feels like...ugh. This morning finds Jonathan and Bristel curled up together in bed. The bed which I covered in plastic and towels...just in case. Not to be too graphic...but Bristel is good at hitting the bucket. Toby? Let's just say I hope the bug hops right over him! ********** I know you guys really aren't here hoping to catch up on the latest sick news. ::smile:: I know why you're here. ...

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