setting the record straight

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 lot of people are curious if Trevy is cured.




That's a legitimate but tuffy to answer. Right now he is seizure free. And we are celebrating that with all our hearts.




But cured?




No. Not really.





Trevy's (and all of his seizure buddies who've had radical brain surgery) reality is...he will always be prone to seizures. We are passionately hoping that should seizures resurface...they will be med responsive.



Polar opposite of The Spasms.



But right now. Today. Because we're trying really hard to take it day by day. We're just thrilled watching him absorb new things all the time! In the words of Toby...it's been astonishing...watching Trevy's potential blossom these past few weeks! His PT was saying the other day how after her initial post surgery eval she was already looking into Gait Trainers for Trevor. Today? Before she had a chance to place her order. He's not just walking...he's RUNNING! Much to my dismay...my mommy-ness doesn't like how close he cuts those corners. I'm sure his Guardian Angel feels the same! He's an imitating fool too! I sneeze...he sneezes. I cough...he coughs. I laugh...he laughs. I say banana...he says baaa...baaaa. I ask are you hungry...he signs and says eeeeeee. Yesterday I was feeding him goldfish...and unprompted he signed cracker! I give all the praise to Miss. Rachel and the Signing Time gang! I say kiss...he says mmmmmmmuah then puckers his lips and slips out his tongue right before contact! I say hug...he comes to me and opens his arms! I ask him to get a chewie...he goes to his chewie basket and gets one. Looking a lot like Stitch making munching motions with his chompers the whole way there and back! All this (and more) from a child who possibly understood 10% of the language we tried to share with him before surgery. Probably understood less. According to his pre-surgery neuro psyche eval he was functioning close to 8 months of age in receptive/expressive speech. It's like I told Dr. Neuro the other day. It's just a million little things that in and of themselves are really not that noticeable. But when you put them all together? Miraculous!



So is he cured? No.



Did he wake up with half his brain in a Path Lab and suddenly become a typical approaching 3 year old? No.



Does he have a HUGE mountain of development to climb? Yes.



Do I think he can do it?



For the first time...in a very looooooooong time...



My heart is soaring with hope that YES he can!

please check "yes" or "no"

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!

moods

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 Chips bag.



Maybe that'll help.


















Nope.



I hate cranky days! The worst part about hating being cranky...is that instead of it flipping the Happy Switch...it just seems to make the cranky sink deeper in.



Oh...and by the way...I vaccinated Trevor today for the Swine Flu. It is the first vaccination he's recieved since his 6 months well visit. So this was a big deal. And I'm more than willing to blame "the mood" on it. At least in part. See I have been consumed with hemming and hawing for weeks now. And I DO NOT WANT to share this publicly. Just in case I made a mistake. A really really big mistake. I just have this silly integrity issue. And my integrity won't let me keep it on the DL. Because I would want to know. I have, in fact, pried into the vaccination life of others. And sought advice regarding this issue.



So there. I drove him to the clinic. Read the literature. Swallowed the lump in my throat. Signed the paper work. And let her jab him with the stupid stuff.



No skeletons in my closet!



Isn't it so bizarre how we can crazy talk ourselves.



One day I'd tell myself that there's no way he could survive 100s of thousands of seizures and radical brain surgery...just to die from a flu.



::laugh laugh laugh::



The next I'd be like, there's no way he could survive 100s of thousands of seizures and radical brain surgery...just to die from a flu shot.



::laugh laugh laugh...choke!::



Can he????



Guess we'll know in 3 to 4 days.

tis' the season

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 of cash to spend, I got some of those reusable containers from the store, filled it with truffles, and put a ribbon around it.


**********


Puzzle Wreath Ornament and Mitten Bookmark Clip


instructions for both can be found here compliments of an IS mommy friend, Jen!


**********


Garlic Dill Oyster Crackers (by Cyndi)


1 cup vegetable oil
1 tablespoon garlic powder
1 tablespoon dill weed (optional)
(I usually only use about 1/4 of the dill weed called for,
as we like to taste mostly the garlic.)
1 pkg. dry ranch dressing mix
2 12 oz. boxes of oyster crackers

Mix all ingredients, except crackers, well (I use a 2 cup measuring cup to mix this so I can pour evenly). Place all of the crackers evenly on cookie sheet(s). (Don't worry about the crackers being in a thin layer. It doesn't matter.) Pour entire mixture over all the crackers. With a spatula, begin turning the crackers over and over, allowing the oil mixture to coat the crackers evenly. DO NOT BAKE! The mixture will gradually coat the crackers and sink in. Store in an airtight container.

This might look strange as you mix it, and you may think the crackers will get soggy...But they stay crisp as new!!! Amazing!!!

he'll hold his booze

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 AMAZING! I know I haven't said much about his recovery. It's just that I want to share it well. I'm not a whip it out kinda blogger. I need time...to sit...and think...and visit one of my favorite websites - Thesaurus.com. And I just haven't had the chance. Because turns out Amazing Boy is also Needy Boy! Anyway...all that to say...I'm sure the scan will be 100% A okay. Just the way we like it. It's just that I'ma smidge curious enough that I emailed Dr. Neuro already. No word yet.



The CAT scan being the easiest among all the neurological testing we've ever had to endure. And we've been through some neuro hoops. We opted against the IV med route. Choosing instead to use the nasal Versed.



20 minutes and a completely darkly hushed room later...Trevy was still wide eyed. And over-using (if such a thing is possible when you've only just learned to say a word consistently!) his new word.



The quiet was punctuated with random "hi"s. In varying pitch and decibel.



So Nurse Practitioner gave him something else. I don't remember the name. But I do remember where it went. Up the...ahem!



Another 20 minutes later and Trevy was now not just saying "hi" every five minutes. He was also punch happy. And giggling with his "hi"s. I have a feeling he'll be a happy drunk.



::grin::



Sooooo...another round of up the boot we go.



Still no sleepy. I'm fairly sure we were all exasperated by that point! So a joint decision was made to take him the scan room and just try. All they needed was a few seconds of calm. And that was all they got. The rest was screaming. And fighting. And kicking. Or trying rather. He was swaddled up like a baby bunting. And strapped with a large velcro band to the sterile white table. That moved up and down and into the big open circle scanner. While Trevy pitched a fit. And mommy n' daddy serenaded him with every toddler tune we could think of.



Until the machine booted down. Then he decided it was time to sleep of course. Seriously. It was lights out.



Thankfully the images were enough according to Dr. Radiologist. Plus, I hit the nurse jackpot! So happened that one of the girls knew a thing or two about cutting hair. So we took advantage of the sleepy time. And gave Trevy a new...much shorter...do! It looks much better...says Obsessive Me!


We chatted a bit while she was snipping here, there and everywhere. Of course, the topic of his scar came up. She asked what type of surgery he had and why. I broke out my little memorized shpeal. With which most people usually just politely nod along. Not Nurse Beauty Shop. When I told her he had his entire left field (as Dr. Rockstar would say) removed...she stopped mid-snip and said (and I quote)...



"No Shhhhhmack!"



Okay...so Conservative Me edited. But you get the idea!



I laughed out loud. Then proceeded to thank her for treating it like the big deal it is! Cause, honestly, it's a little creepy to get the polite nod when you tell someone that the scar...running from front to back of his little two year old head...is covering the area where there used to be a left hemisphere. And now isn't.



I think radical brain surgery is worth a potty word or two.

BOO! (a picture marathon)

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!

still kickin'

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 their faces light up with excitement over new things. I love taking them to the zoo...just because it happens to be nice outside. I love cooking with Bristel. I love reading Swiss Family Robinson with Toby...with Bristel and Trevy curled up in my lap too. I love seeing Trevy's face beam every time he sees his sibs. I love moments like just now...when Toby comes to show me his work and kiss my forehead. I'm sappy...I love melty moments.



It's one of the most rewarding (and challenging) things I've ever done in my life.



But enough with the chit-chat.



Trevy's napping...which means it's time for Bristel and mommy to spend some time learning new things together!




ps. when I get a few...I'll share some of the really beautiful Trevy melty moments too!



pss. I would also like to add that I could not do this without the support of Grams!

another Acthar waiting game

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 who
was reviewing the case at the insurance company said that she was finding
"conflicting evidence" about ACTH and since it wasn't FDA approved they may
not approve it, even though the doctor had shown medical necessity. ASAP
says that if it is denied, it could take weeks to do an appeal. Of course we
aren't getting the ACTH until this is figured out.

I was so so hoping it would be figured out today so it could be on it's way
to us tomorrow and we could get this started... we don't get delivery on the
weekend so if nothing happens in the next few hours, we are looking at
Monday as our best case (which will be a week from prescription to drugs in
hand). SO FRUSTRATING.

Any advice at all????



**********



I beat back my exhaustion and started whipping out emails. Like this one which I sent to Don Bailey, CEO Questcor.




Mr. Bailey,

I would love to think up some cleverly witty email filled with innuendo and subtle sarcasm. Two glaring reasons stand in my way.

1) Even after a quarter of a million dollars worth Acthar being injected into him...Trevor continued to have hundreds of thousands of uncountable seizures slowly stealing his life from him. And is now just a handful of weeks post radical brain surgery. Not much time for fun.

2) The urgency of the email below. (I forwarded the thread)

For the life of me I CANNOT comprehend why this is still continuing to happen. Surely with your recent management expansion you could find a way to make the process of obtaining your VERY expensive drug less complicated.

And for the love of all that is holy I would hope that this amazingly brave little family has the drug on their doorstep tomorrow.

...danielle foltz



*********


Do I really think my voice bears any weight with Questcor? With Bailey?



I used to be that naive.



But that doesn't mean I'm going to be silent.

have a chewy baby?

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!

more than just a kiss

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.



I know who you're stalking.



And I want to share him with you. I desperately want to. It's been burning in my heart for days now. Stealing sleep. Sadly...not appetite.



I just can't climb over this hump of how. How do I convey all of this?



I want to pour every emotion out so effectively that even the unsuspecting reader that just happens to stumble here...will feel it.



And click away changed. From the core out. By the power...by the courage...by the magnitude of not just Trevy. But of every IS child. As we...our family as a whole unit...have been deeply changed.



And so has been my soul struggle.



Because when I tell you that we have a new nickname for him.



Romeo.



I fret the response to be, "awwwww...how sweet".



Which although nice...misses the essential.



I crave for your hearts to jump up and over the moon likes ours does every time he plants a slobbery one on us! He's given me so many smoochies these past few days that I'm not sure my heart will ever land. It's soaring away on wings of hopful abandon!



His kisses represent a treasure that once upon a time...when the Seizure Monster was dormant...we had. But then the Beast woke. And stole the treasure away. Where it was buried under disorganized brain waves somewhere in Seizure Land. And over time thought never to be found.



See...the miracle to me is more than the the sweet lips and peeping tongue sandwich. That I can't get enough of.



It's also that the kisses have been there all along! Masked by saturating seizures. Waiting for the key to calm the storm inside and unlock the treasure chest...



And now here we are. Staring inside this glittering gleaming Hope Chest. And stealing kisses from it like there's no tomorrow...



Because our hearts still remember when tomorrow was stolen away from us.



And to us that means that sometimes...



a kiss is WAY more than just a kiss!




(now watch the video below!)

It's a treasure!