happy being trevy

Childish I know...but we tick the days off until our Speech Therapist makes her appearance. She's just so coooool! Fun & energetic & most importantly loaded to the gills with toys! Trevor's face lights up like a Christmas tree when she arrives! And this weeks session was a real treat. Trevor was very interactive & social & engaged. And when it came time to shake that maraca...there was just no stopping him! It's really cute...albeit bordering on violent. Ms. Speech says "he's such a boy!" Trevor excels at the non-verbal communication. He has very expressive eyes. And will wave his arms in a crazy you'd better duck kinda way. That's his happy que! It's the verbal that's just not advancing. So Ms. Speech gave us some more signs to work on & activities to promote mimicking sounds. And we'll see if we've made some progress at our next meeting. But since we had her captive anyway I thought I'd pick her brain a bit m...

Friday's appointments went well. The lovely Dr. Neuro is very pleased with Trevor's progress. I think in a way she's surprised that he's still moving forward seizure free. Two months ago in her office her gut was telling her differently. But here we are... still no spasms . Although it's way too soon in the process to let out a collective sigh of relief. She said we'll be rescheduling an MRI sometime after Trevy's 18 months. We need to allow more time for his little brain to grow...so if there is a flaw it'll be easier to spot. My calm at having to shelve the test for now is crazy. I've never been very good at playing the waiting game. I was the kid who snooped out the Christmas presents...no hiding place could elude my detective*ish* skills. But somehow I'm okay with holding off. A few more months anyway. We're all looking forward to the results from the B.E.A.M. study. June 19th is coming up quickly. Dr. Neuro & her fellow (ak...

of things said by my children this week. If you're bored & wanna play guess who said it...I'll come back later & paint the fonts in appropriate colors. Blue for Toby. Purple for Bristel. And possibly add the scenerio too! We'll see how bored I am later! *grin* ********************************** I'm berry berry sick! (Hand Foot & Mouth thing) You've got a cute little butt, buddy! (during bath time with Trevy) Ewwwww...you spitted on me! (during church Bristel sprayed her I love you all over her brother!) Well....temporarily she isn't acting very sick! (Bristel is a cranky sickie) Uuuuugh! All this singing is making me crazy! I'm gonna tell my mama! (said by both...too many times to count) Mommy wait...you're not beautiful yet... (while brushing & clipping my hair) Right...Danielle? (she's obsessed with using my name now) Mommy, I love you & God more than the Sony! (now that he can read it's no longer the Play Station...it...

genetics testing begin... our insurance authorization just came through today. And since we're at the hospital tomorrow for a neuro appointment anyway... ...why put it off, right? Although between now & then I've really got to work on quieting all the *do we really want to knows* which are contributing to my current screamer headache!

I know that I beat the ACTH drum loud & often . But the fact is... ACTH is day by day proving to be our miracle drug. Trevor's seizures have now been in remission for FIVE MONTHS ! He is by no means *out of the woods* - as his continued abnormal brain waves reveal. And every day the back of my mind wriggles reminding me that the relapse rate is 50%. And that Trevor's risk is higher based on his subclinical activity. And I also know that ACTH fails 50% of the time. I have friends who have gained seizure freedom via alternatives like Vigabatrin...Keppra...Lyrica...and others who are still trying to find theirs. But I will always celebrate the fact that we've had THIS time gifted to us by ACTH . This time of seizure freedom. This time of continued development. This time of hope. But I wonder if other families will be robbed of THIS time with their babies? If they'll be forced to use alternatives that may not work because their insurance refuses to cover the ...

Holding hands with Daddy always makes a cute pic op Natives & Colonists Oh My! Off on an adventure through the woods Toby posing with the hand carved canoe Bristel sportin' her shades...and soaking in the sights ready for the Thanksgiving Feast Is it me...or does he look like he'd rather be at the dentist? Did you hear that? just cause she looks so darn cutsie in those shades! wow...caught a smile...maybe he's starting to have some fun! Bristel attempting to be a pirate The I'm not trembling cause I'm scared face The captain's bed looks comfy And here she is...the Mayflower II

perks! I never ever in a million gazillion years thought I would be homeschooling my children! Ever! And in fact, Toby went to a traditional school even while we were playing missionary in Africa! I guess it's a combination of being a lazy bum...having other children under foot...knowing my limitations...and wanting the absolute best for Toby. Buuuuut ...after a lot of thought & conversation (both vertical & horizontal) we finally opted to home school Toby at least through the 1st grade. For those who may be interested we're using Abeka dvds ...which are a great option if you're a lazy bum...and have other children swinging from your ankles! *grin* Toby has always excelled academically ...and homeschooling has not changed that a bit. Since November ( when Trevor was dx ) Grams has really stepped up to the plate...and she has taken over his education! Completely! I love you mom! It has been a wonderful experience watching them together. I can't help but t...

On the advice of Trevor's OT we were set up with a Physical Therapist evaluation this past Tuesday. And it didn't take the seasoned (she's been doing this for a looooong time) eyes of Trevor's newest specialist to notice... there is a definate neurological delay on his right side. Which makes sense. All the sub-clincal activity is bouncing around his left hemisphere. It all makes sense. How hard he has to concentrate to clap. And then sometimes misses. How he favors his left hand. How he drags his right leg behind when he's crawling. How he'll be crusing along when suddenly it looks like his right leg just gives out and he tumbles to the ground or whacks his head on the door-jam. The way he always looks just this side of tipping over while free-walking! And she pointed out his zombie walk. His right leg stays straight & stiff. And his little foot makes a slappy noise when it connects with the floor. And even though he walks with a limp...he still is able t...

because she's SO accessible! She emailed to let me know that she has gotten approval (yes, the ever on-going insurance battle) for Trevor's BEAM study in Boston. Each EEG Trevor has shows more activity popping up...all focalized in his left hemisphere. I wanted a PET scan based on advice from Dr. Harry Chugani - a well known & respected pedi neurologist who makes himself available via email for parents dealing with IS. But for whatever reason the neuros here are slow to move forward with PETs ? I know other IS parents from the same clinic have hit the same wall. It's frustrating when you're on The Hunt ...my nick for the journey we're on to find the under-lying cause for Trevor's IS. Dr. Neuro ...who has expressed her concern given Trevor's continuous abnormal EEG patterns...was able to push for a compromise! And so perhaps June will provide us with more answers? I wish more neuros were as accessible! She's also setting us up with a 2 nd o...

In a way...baseball is our first step towards finding our new normal. For so long we've told Toby that he'd have to learn to play soccer...when all he wanted to do was play baseball. Interesting how things work out, isn't it? I've been worried about my *big* kids. Their world has turned tospy turvy too. I mean, how do you explain to a seven year old that he may never see his first best friend ever again? How do you make your animal loving little girl okay with giving her puppy away to a new family? How do you tell them everythings going to be okay...when your heart isn't really sure? Another IS mommy told me today...that it gets easier. With time. But I'm stuck in this place of the unknown. And sometimes it's really scary. And I'm such a coward. We've tried to be open with the kids. Of course they don't understand. But they love us...and trust us with that child-like innocence that's so scary & beautiful. Jonathan & I hope...

Soooo ... Friday ...we knew who it was by the country code on the phone face. J's dad. He's loading our container for us. It was supposed to arrive that day...but was delayed until Monday. No shocker. That's Tanzania. Saturday ...I obsessed ALL day about my stuff! Sunday ...more of the same. Monday ...country code indicator again. My heart always sinks...it's like I'm just waiting for the hammer to drop. Honestly, at this point we're open to greasing the wheel a bit. Not bribery, mind you. A tip! Today ...another call. It's getting expensive. Evidently they needed a copy of J's passport. Scanned & emailed & received ! Things are moving forward! And...if I squeeze my eyes real tight...I can almost feel my comfy bed! Which I'm hoping will cure my insomnia!

Toby stumbled downstairs this morning...snuggled me up...and declared... "I feel like I could sleep for two more hours!" Like mommy like son, right?! Only add a few dozen to my number! It seriously took every itty bitty drop of caffine induced energy I could muster to drag myself through the morning madness. I'm impressed that I have real clothes on! That's something, right? ::make-up free tho I may be:: I discovered this weekend that Hand Foot & Mouth is very nasty indeed! I don't remember Trevy being that inconsolable ever! Not during seizures... Not through ACTH... Not whilst teething... Not even during the wean.... Yep, HF&M totally takes the cake for worst sickies ever! He spent most of last week not being able to enjoy his new pain n' fluid free ears! The sores in the mouth consumed him! And the rest of our sleep patterns with it! But today... He woke up happy & hungry! (His little blistered mouth hurt so much that he had been...

Wow...today was one of those forever days. And not necessarily in the good way. Evidently Trevor got more than tubes from our hospital visit yesterday... he woke up this morning with a raging fever. Which of course sends me to freak-out-ville...the whole increased risk for febrile seizures thing. It's funny. I wasn't even this psycho when Toby & Bristel had malaria! Jonathan took him to Dr. Pedi first thing this morning. He & I were convinced it was the ear infection's last stand. Turns out he contracted a case of Hand, Foot & Mouth ! And my poor baby has been fussy & restless all day long. I finally got him bathed & in bed. *sigh* And now I'm SO ready for a nice long bubble bath! ************

Call at the last minute! Ugh! I finally called them to find out when we need to arrive at the hospital tomorrow morning. 7:30 AM! Trev's the 1st order of business evidently. I sure hope the tubes help with the crankies & clumsies!

I think many parents are probably aware of the current cost (and subsequent denial of insurance coverage in some cases) of ACTH. Acthar Gel is one of the front line treatments for Infantile Spasms. We battled our insurance company and won. But sadly not every family does. Of course we learned of NORD and Ms.Hardin. But frankly, when your child is seizing over forty times a day (and intensifying)...waiting for a call back can be excruciating! Questcor claims to help. But I quickly found that there are piles of red tape to swim through. First. You can't proceed with the treatment and then worry about the paperwork. Anyway...those that follow Trevor's story know that I finally got around to vent what we went through and posting it here . But I also posted it on the MCH Wiki page set up by Miami Children's Hosptial. I was VERY surprised to hear back from Dr. Miller who read my story and not only informed me of new developments but also enlisted my help. It's nice to k...

After two cups of coffee & my work out I got down to business... playing phone tag! First call Me : Yes...I'd just like to clarify we have fully moved onto your network? ( our primary insurace through our mission agency lapsed ) Her : Ummmmm...I don't see this in your account. Me : ( not shocked...it's par for course right ?) Well...I called last week & spoke with the patient advocate. She advised me she'd take care of everything & assign us a case manager. Maybe it'd be easier to forward me to her? Her : Ummmmm...you currently are not assigned a case manager. Me : ( still feeling calm...and proud that I am ) Okay...well let me call the patient advocate then. Click Second call Her : How may I direct your call? Me : Patient advocate please. Her : (forwarded call w/o so much as a *sure...glad to help*) Me : Left message Third call Me : (dial Geneticist to reapply for insurance approval so that we can finally get started on that!) Yes, this is ...

He gets it from his father. --- This passion (bordering on obsession) for baseball. --- Gearing up for Toby's first real Opening Day had me walking down memory lane... --- ...the boy loves the game SO much that he spent the first few months in TZ attempting to teach the neighborhood kiddos the American past-time. It was super cute watching Toby's little tow head bobbing in a sea of black curls. --- Giving in to the nostalgia...I dug these pix out of my archives. Sadly...most of the really good ones are on our big computer. In Tanzania. --- And I know you'll be bummed...but...there're none of me in African garb. --- But I like this one (above). That's (the non tow headed little guy) Toby's best friend ever - Kevin. --- Toby & Kevy were trying to teach the big boys proper batting stance! --- --- We used to live there! That was our home! *sigh* I miss that house! And then I remember the power cuts... and it doesn't hurt quite SO bad! *wink* --- --- I...