happy being trevy

I think I'm stressed about tomorrow! Cause I have a major case of the munchies! Can somebody please hide the chocolate & chips! At the break of dawn we're off to Providence. To hook Trevy's little head to an EEG machine. Again. This makes six...in almost as many months! It's a three day-er. Which stinks. But it's a Digitrace. So we'll be home instead of in-patient. Which...doesn't stink. But still...three days is a looooong time. Why so long you ask? Weeeell...because Trev's been having some odd little episodes. Two of which have been witnessed by two different doctors...at two different times. Who also feel it looks suspiciously seizure-ish. The only way to really confirm that though...is with an EEG. Thus the extended hook-up. After Dr. Neuro has a chance to read the results we'll move forward with phase one of the The Plan . Introducing an AED. Phase two is a 3T MRI...which is in the waiting for approval works. I have a feeling I...

Okay...so I know I've been a bit of a downer recently. Comes with the territory. You know... ...Life. Being a girl. ::smile:: I'll admit it...I've been a big baby lately. Vulnerable. More susceptible to the gloomies. Like...when asked on three separate occasions how old Trevor is. And watching all three different sets of eyes show surprise. Not the good kind either. Rather the kind that reflect pride...on just how much their little one is accomplishing. And at three months younger! Ugh! I'm afraid I used to wear those eyes too...so I don't judge too harshly. I just go cry in the car. ::laugh:: But actually...we've had some wonderful successes recently. After months of zero forward movement...in specific areas...Trevy seems to be creeping into new territory. He had a wonderful Speech Session this week. Typically it goes down like this...Ms. Speech hands Trevy a toy. Trevy takes the toy...with his left hand. Always the left! Trevy spits out binky & chews on t...

The Smithsonians (Yeah...that was impressive!) Eating out for lunches (What can I say...we're broke!) Making new friends on the train (Not hard to do when you're stuck on it for NINE stinkin' hours!) Banging the gavel with Senator Klobuchar (Has a pro-baseball player ever been elected into office? He may be the first!) Taking pictures (Yes...now mommy must print them & help assemble a scrapbook for the local library...) The tree crashing through the engine (Such a seven year old boy!) Touring the Capitol (It was SO cool riding the secret train from the Senate side to the House side!) Staying in a hotel (Only cause it had a pool) Riding on a train for the first time (Yes...well... NEVER AGAIN!) aaaaaaaaaaaaaand finally Going to the O's game (J & Tobes caught a train with Uncle Nate to the game. Trevy & I stayed back and had a dinner date! It was a sweet ending to an amazing journey!)

Welcome to the question of the week. Specifically regarding my recent testimony before the JEC. Like every good answer...a blog post is birthed... ::smile:: Even though I make an effort not to show it too often...the truth is...not a day goes by without my heart pinching me. The mostly likely timing is when Trevor gazes at me with those huge eyes of his. In them are shining giant question marks. Question marks that express what his little mouth may never be able to. He looks at me as if asking for mommy help. Like he's trying desperately to figure out what all these sounds mean. He senses that they have meaning. But his little brain is struggling to make it all work together. He often concentrates hard on our lips as they move. Something so basic. The way a baby learns speech. But right now no one is certain if Trevor will ever master this basic skill. The spikes in his EEGs do not write a happy ending. Those are the times when my heart squeezes so tight that tears pop...

Chairman Schumer, Vice Chair Maloney, Senator Klobuchar and members of the distinguished panel. I am Danielle Foltz of Rhode Island and the mother of Trevor Foltz. I want to thank you for this opportunity to speak today about our family’s experience with Infantile Spasms and our journey to receive critically needed treatment for our son. While I am speaking only on behalf of my own family, I would also like to acknowledge the support of the Epilepsy Foundation. The Epilepsy Foundation represents the 3 million Americans who have epilepsy and their goal is to help those individuals get access to the care they need. I know they will continue to follow this hearing and the path from here forward. Thank you. I understand that today’s hearing is highly political. But for us - and the two thousand families devastated by the diagnosis of Infantile Spasms each year - it’s personal. How do you find the words to describe the most horrific event of your life; your personal valley of the shadow of ...

We walked into the Dirksen Senate building heading towards room 106 where the hearing would be taking place. I have a thing with early. I like to arrive early. It's a Jonathan-ism that's rubbed off. So we were there a good 1/2 an hour before the hearing would begin. We were shocked to see a row of people lined against the wall. Waiting for the doors to open. And when I say waiting...I really mean camping. Complete with those little fold up chairs which are great for soccer matches. And JEC hearings evidently. As you can imagine...we are all zonked today. Ready to go home. Ready to rest. Will I ever again get enough rest? But the author of Brass & Ivory ...who I had the privilege of meeting (plus mom!) at yesterday's hearing...has done a beautiful job summarizing ! Beautiful Lisa! It's worth the read...plus, I thought that'd give you guys a little something... ::smile::

Without a doubt...much of my sanity since Trevor's diagnosis is founded in the friendships forged from togetherness in this sometimes tragic & scary & even miraculous & happy IS walk. This ...is one of those friends! She has supported me ( virtually ...we've never actually met...although I was drawn to her immediately after reading her IS journey & feeling her passion for advocating for these beautiful babies) through many interesting twists & turns that have come along these past few months. If I'm ever published...she very well may be my chief editor! I've appreciated every bit...but especially the support I found on her blog today... Take a minute to support me...by supporting her. And then...perhaps even writing a letter of your own! After all it's that get involved in politics time of year... ::smile::

Trust me... I wish to God it weren't! So we jet off to board our very first Amtrak ever...DC bound. And things were going really well. In fact, J & I couldn't help but pat ourselves on the back at our brilliance. No air delay or traffic jam concerns for us. We were training it...chugging steadly along. About an hour outside of our destination the train came to a halt. I thought we were possibly waiting for another engine to pass...and so didn't think much of it. J woke up...Trevor still zonked & sprawled on his lap...and asked what was up. I shrugged. Just then the conductor's voice crackled over the shoddy speaker system... and I kid you not...this is the best of what I remember him saying... "Ladies & Gentlemen...a tree had fallen across the track in front of us...and due to low visability we did not see it...and we hit the tree head on. It smashed the front windshield out and there will be a delay of unknown time...thank you for your patience." ...

That would be Trevy's newest nick (we just like nickin' people in our house) . Compliments of daddio ...who says it's a great football (the American kind...for all my European friends ;o) name! His toddler-y legs are SO bowed that he looks like a little lop-sided walking wishbone. Today we finally get to see Dr. Ortho for the very first time. Our PT thinks Trev'll need some sort of bracing. Soooo ...we're really curious about the outcome. ****************************** Dr. Genes was able to garner approval for the next phase of genetic testing. So Trevy'll also be donating some dna to be shipped to a lab somewhere out there for micro-scoping. We're looking for three things... Rett Syndrome - which Dr. Genes assures is not likely but is always tested for with IS babies A-typical Retts - which is more likely than the above...but Dr. Genes admits she'll be surprised if it comes back positive ARX mutation - I'm not really clear on what this is....

than snuggling a sleey-head baby? I didn't think so either! Unless it's snuggling a sleepy preschooler...or going into 2nd Grader...

The following comment has been awaiting my moderation for days now. My brain has been a bit pre -occupied. With our trip to DC. And with my son's continuing medical care. I've been otherwise engaged...but have finally reached a place to share my thoughts. Honestly...I'm not even sure that it was worth responding...but I have all the same. Maybe it burned some extra calories in lieu of re-vamping my workout sessions? **side note** For the curious...I set my comment moderation ages ago when some...the word dude comes to mind...from Italy said "hi". When I followed his profile link I must admit...I just decided I'd rather moderate. No biggie really. I have however...enjoyed the random moderation opportunities since Mr. Italy! Including PL's below** glad acthar helped trevor , but your friend is very wrong on the acthar pricing of $60k. furthermore, quesctor has been free acthar to anyone who's been denied by insurance. frankly, i don't know any o...

Okay. I know I should be celebrating every new thing he does. And at first I was pleased with this particular skill. But seriously? The whole chucking of random things across the room...it's just getting out of hand. It started out so innocent too. Spewing his binky out every time he saw his bottle! We all *awwww how cute*- ed his ACTH driven food obsession. Then he moved on to tossing his bottle when his tummy was all filled up. It became quite the mommy & daddy workout trying to save the carpet from potential souring milk-age. Oh and the toys. There is a constant flurry of toys being flung around our house at any given moment. This one I'm convinced was a learned from big brother skill! And possibly the visiting Uncles...since I was forced to Referee and shut down the block toss this morning! When is your train leaving again, Uncles? And the newest fascination? Chucking cans. Tomato sauce. Tuna fish. Green beans. Even the occasional asparagus ( which we still...

Ever since we returned from Trevor's Boston BEAM things have been kinda crazy . The results have warrented a multitude of candid phone conversations. With doctors. Therapists. Family. Friends. The people that set up special tests like extended EEGs & 3T MRIs & such. I swear there's an imprint of my little purple (because that's Bristel's fave color) cell on the side of my head. The thing is... I hadn't realized that Toby's been eaves dropping. He always seems to be engaged in something else. Baseball cards. Play station. Swimming. Shooting hoops. Other stuff. I should have gotten a clue. He's been extra sweet to Trevy lately. Playing with him by choice...and not because mommy's yappin' at him to do so. And then yesterday when his meal-time grace included helping Trevor & all the other babies to not be sick anymore. My heart melted. But then eating & conversation resumed and all was forgotten. Until this morning. I was busy pickin...

only MUCH MUCH bigger! I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC! My eyebrow raised. It was just kinda odd. Note-able odd. You know? Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines... I hope I'm not saying anything I shouldn't! Maybe I made somebody mad? Wait a minute! I live in America! I'm allowed to say anything I want! Aren't I???? A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email. **Side note...he's always doing that! Reading my emails! Sheesh!*** The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on ...

We've had quite the cranky stretch at our place... We're thinking teething? Hope it's not the ears...again! At any rate...all the fussies finally pushed Bri-bee & I to take matters into our own hands! Smooch those crankies out!

It's a hazy crazy rest of July for our family... Jonathan has an interview today! His brothers are coming for a visit next week! We crossing out fingers that our container arrives while they're here. We'll shamelessly use them for their muscles! Trevor is filled to the gills with therapies & doctors appointments! The big kiddos are busy with the local summer reading program...and other summery stuff! Including driving mommy bonkers! And me...well I'm busily putting my *activism* to good use! I hope! All that to say... it's going to be very busy the rest of this month. SO much to post...just no time to do so...

until my little eye spied the vaccines gleaming on the counter. Drawn & ready to jab. Liquid proof that I was very wrong. Dr. Pedi & I have had the To Vax or Not to Vax conversation before...and I thought we were together on this. Wait until Trevor turns two. Give his little brain more time to develop. I thought I had a few months before I had to start diving head first into understanding the vaccine controversy! Evidently not. I walked out with my shoulders sagging so low I'm suprized I'm not sporting rug burn! I hate that I'm not as educated about this issue as I'd like to be...but my brain is seriously saturated already. I hate feeling like the crazy-psycho mom. I hate being told that a seperated MMR doesn't exsist...when I KNOW it does! I just didn't know how to get my hands on it. I hate believing that I've found the *right* doctor...only to leave disenchanted. Again. I hate that being my child's advocate leaves me exhausted & battle wo...

The Ingredients 1 (1/2 hr. tardy) occupational therapist session 1 physical therapy workout EI case manager too **optional** 1 missed nap 4 hours of serious melt down by normally sweet daughter 3 hours baseball camp 1 barely remembered well-visit 5 re- hashing's of Trevor's medical history with various specialists/doctors 1 stressful moment explaining why you're choosing to wait on vaccinations 1 teething baby 3 phone calls to schedule various tests/appointments A full day of sibling squabbling Blend all ingredients randomly throughout your day & there you'll have it! The perfect recipe for a stressed out day ! And a migraine for dessert !

So Jonathan asked me the other day when we need to stop talking about it. Tanzania . I sat there at a loss for words. But not thoughts. Trevor had his first cluster of spasms literally 3 weeks from when we were due to depart. We had our return tickets in hand. I had put a dent into packing our bags. I was already waking up clammy from flying phobia night sweats, for crying out loud! Our return was THAT close! Actually, Jonathan pulled a suitcase from the back of our closet the other day. My heart melted when I looked inside. How'd we miss this one? It looked exactly the way I had left it. Packed and ready for take-off. The thing is - even though we only spent two years actually living in Tanzania - we tallied six more dreaming about & preparing for our life there. Four years of earning Theology Degrees - for the express purpose of building a ministry there. Two years serving on a church staff - with our Tanzanian dreams becoming daily more tangible. An...

By all accounts it started out as a happy strawberry patch kinda day - compliments of the local Early Intervention crew. Smiles filled the rosy fields. Nobody could guess the terribly *messy* turn of events looming moments away... Big brothers happily helped little sisters. Little sisters busily pick pick picked the succulent berries. Families bonded & sampled the yummy summery fruit... But wait I wonder what the babies are up to? pondered a big brother... No worries... the babies were just frolicking in the hay! Or were they? Hmmmmmm... it appears it wasn't just the babies smooshing the strawberries that happy strawberry pickin' day... The big brothers & little sisters had guilty fingers too! Legend has it... that every year during that strawberry patch kinda time... little lips & digits will be stained a smooshy stawberry red. And now everybody knows who smooshed the strawberries ! The End

Stealing sippy cups... His sister wasn't very pleased to find her chocolate milk dribbling down Trev's tummy! The rest of us thought it was pretty cute...

The scene. I'm at the kitchen counter bare-footed-french-toe-nail-sporting (my mother's day gift I collected just this week) armed with a sorry excuse for a knife. Attempting to chop greens & other salad fixings. This always congers memories of Tanzania for me. When Bibi Mary & I would bleach & prepare the fresh fruits & veggies. Bonding. Laughing. Mostly at my sorry Swahili. Or Jonathan's! It's a sweet memory. But yesterday , I was enjoying some much needed alone time. Just me, my cute toes, the salad & my thoughts. Didn't last long. In bounces Bristel . I don't pay much attention. I'm still relishing my silent moment. Through the fog I start to hear some whimpering. The getting into trouble kind. Not the hurting kind. At first I ignore. But I'm a sucker for the mommy-guilt factor so I give a half-hearted, "What's the prob, hun ?" More whimpering. I sigh (what's more annoyed than a sigh?) and turn. T...

Bristel couldn't have looked cuter or had more fun during her Fluharty Preschool Speech and Language Screening Test. I know...sounds fancy huh? I'd have no idea what the heck that meant except that it's printed (along with her name) on the letter I just got in the mail. Gotta love google! ::grin:: Basically, it was as I suspected. I will proudly don the Drama Mama crown! ::rolling eyes - at self:: Although, Bri did stutter several times during the testing...so at least I didn't look like a complete fool. Because, after all, that's important too. Oh and when I say *testing* I really mean *playing*. Puzzles. Crayons. Books. Puppets. Playing! The teacher said, and I quote... "At this time it appears of though Bristel is presenting with a developmental dysfluency which can occur when children are in their preschool years." Actually I'm really relieved. And I'm learning to be okay with being a Drama Mama ... ::smile::