happy being trevy

I can't even fully express the various levels of support we've recieved as time keeps ticking closer to Surgery Day. Thank you seems so unfullfilling. But it's all I've got right now. Soooo...thank you all so very much for the emails. Visits. Hallmark cards. Phone calls. FaceBook love. Gift cards. Road trip mulah. Care packages...from near and far. And the list goes on! The genuine care (from family...friends...cyber friends...therapists...AllStar fam...various people whose lives have been touched by Trevy) that has been poured over us is like warm sunlight in our souls. Jonathan and I both have been blown away by the generosity and compassion that have been showered on our little family! And then I look at Trevy. All beautiful eyes and sweet soul...and think...of course people love him! ::smile:: On Trevy's behalf (and before things get super crazy) we wanted to just give you all a big fat... THANK YOU!

Stress that is. Trevy has a raging antibiotic resistant ear infection. We were able to switch him to a new med tonight. Poor thing has been a cranky devil all day. I shoulda known. It wasn't til his ear was caked in goo that I realized Sunday's script was ineffective. Anyways...cross fingers and toes with me that this one kicks it!

Because of course this couldn't go off without a hitch...right?! Just hung up with Nurse Neurosurgeon. Literally. Who informed me that regardless of what Medicaid may be telling us...the bill could still end up in our mailbox. It's happened ...she said. So I clarified what Chugani's nurse had relayed to me a couple months back. Being that if we were billed it would be for $4000. Um. No. More like $15,000. My temples are still a tense throbbing mess. Making this post very difficult to complete. But it's part of our story. The sharing of which I have myself convinced...may benefit someone else. Someday. The big thing is...I was also under the impression that Dr. Neurosurgeon would not preform the surgery without cash in hand. Payment plans not accepted. I had this mental image of us stumbling into the hospital. Road weary. And seizure-y. Only to be sent packing because we don't have fifteen grand collecting dust in a bank. For such a time as this. Nu...

Thursday night we'll kiss Toby and Bristel goodbye. They'll be staying behind with Grams and PopPop . We felt that made the most sense all the way around. Just try telling that to my arms which are already feeling cuddle withdrawal pangs. The car will be packed and ready for take off early the next morning. After our big flying fiasco last time. And the fact that I'm not comfy with Trevor having brain surgery and being 30,000 miles above the nearest Children's Hospital. We've opted to drive this go. Mapquest tells us to expect 13 hours. So we leave early Friday morning, October 2 nd . Hoping to make it over half way that first clip. Arrive in Detroit Saturday, October 3rd. And then the real stuff begins. October 4 th , Trevor will have a sedated MRI. October 5 th , sedated PET scan in the am. Meet with Dr. Neuro -surgeon in the pm. October 6 th , GRID placement. October 7 th -8 th , spent in-patient with grids collecting essential data pre -surgery. October 9 th...

Perhaps the irony will not strike others as it did myself. But after reading the recent Questcor news release stating... "Questcor has notified the U.S. Food & Drug Administration (FDA) that the Company intends to submit its sNDA for H. P. Acthar(R) Gel (repository corticotropin injection or Acthar) for the treatment of IS in October ." The light bulb in my head exploded. How about yours? Now it makes perfect sense why the sudden interest in sponsoring an IS Awareness Week. In October. Well...that and the fact that sales have been down. What with the decline in the national birth rate and such. Oh and also... this : "... if Questcor is successful in obtaining FDA approval for the IS indication, Questcor believes that it will also qualify for a seven-year exclusivity period during which the FDA would be prohibited from approving any other adrenocorticotropic hormone (ACTH) formulation for IS , unless that other formulation is demonstrated to be clinically superior t...

raising awareness (parts I , II and III ) than I suspect this post may also get your advocate juices pumping on this beautiful (forecast warm n' sunny here) Monday morning. See...after several concerned IS parent emails to the CNF we finally heard back. A solid week later. From John Stone Executive Director Child Neurology Foundation. I'm going to post both John Stone of CNF's correspondence addressing our concerns. Along with Mike Bartenhagen's response which (not to sway public opinion...but to encourage weary eyes to take a deep breath and continue through the whole post) had me giving him quite an exuberant standing ovation in my living room. I learned that our cute lil' cape cod has very nice acoustics. Sooooo my friends...may I suggest you get your reading specs out and your thinking caps on...this post is about to become (well worth the read) text heavy! ********* Dear concerned parents, Thank you for your recent emails. First, I extend my best to you ...

So a friend suggested a neuro-psyche eval would be a good idea for Trevy. Pre-surgery. To get a developmental baseline. I was like, duh, good idea! And relayed the message to Dr. Neuro...who was like, duh, good idea! So last Tuesday morning we trekked to the hospital. Just Trevy and me. It was like a date. ::smile:: Although I silently called down curses on Jonathan's head when I opened the trunk and discovered zero out of FOUR strollers! Because of course it's his fault! ::wink:: Anyway... We bumped into Dr. Neuro while filling out paper work. Can I just pause a moment once again to say... I LOVE HER (see...I'm not all whining and moaning and negativity! I give praise where praise is due. And vica versa.) She gushed over Trevy's curls. And smiles. And how big he's gotten. Then looked me in the eyes and asked, "how are you ?" . Which, drat, dontcha know made my eyes water. She rubbed my arm and said we'll chat later. To spare me the embarrassment of a...

The comment below is exactly why I am shocked (insert - astounded...grieved...disturbed...and the list goes on) that The Child Neurology Foundation did not come to us to glean ideas for an Infantile Spasms Awareness Week. ********** "What do I want from IS awareness week? No parent should ever have to diagnose their child on YouTube No parent should be told that their IS child just has colic, reflux or a delayed startle reflex. No parents should be offered the choice between keppra and depakote as the first treatment Neurologists should put out an agreed statement on treatment protocol IS should be brought to the attention of pediatricians, nurses and nurse practitioners as an emergency condition that it is valid to refer a child to the ER with. EI therapists should have a pool of information on the best way and the best intensity to treat children and help them close the gaps. All people with IS should have access to the same quality and cost of healthcare as I am lucky to ...

We're a pretty tight-knit group. The IS community. We blog. We email. We post to forums. We chat on the phone. We friend each other on FB . And so on. Some of us have the very special opportunity to meet. And deliver an in-person hug that spreads from the IS changed spot in our souls right through to the squeeze of our arms. It is a very moving thing...let me tell you. Mike Bartenhagen is one of those IS friends I have had the privilege of meeting. He was the parent liaison on the FDA panel during the Vigabatrin hearing. I was the Epilepsy Foundation parent representative testifying before the panel. Jen Smith , advocate extraordinaire, was also in attendance. There to support both Mike and myself and to represent her son ,Austin, who achieved seizure freedom on Vigabatrin . For me...it will always be one of those memories. The kind you pull out on a rainy day to feel your heart warm. I'm posting below the email Mike sent to Alanna Peer (Development and Events Coordinator -...

Once upon a time... In a land far away... Where seizures were in remission and life was not so draining. There lived a mommy with fight in her heart. This mommy...together with her family...made a very special journey. At the request of a very important woman ...who also hosts the heart of an advocate. That was how it came to be that the mommy testified on Capitol Hill against the tyrant Questcor...and their criminal abuse of the Orphan Drug Act. See, a few months prior to the mommy's son being ensnared by the Seizure Monster...Questcor amplified the price of their drug. The front line drug. The drug indicated in the rescuing of her infant son from the Beast. Acthar gel. Over the course of a handful of days...Acthar's price point was increased from approximately $1200 a vial to $25,000 a vial. And it did not halt there. Today it can cost upwards of 30k per 5 ml vial. Most infants require a course of at least 4 vials. Suddenly the mommy...seizure saturated son in her arms...was...

Okay...so Blogger gives me major headaches with the whole picture marathon thingie. I can't figure out...well more honestly I don't want to waste my day trying to figure out how to put the pictures in my preferred order. Drives me OCD side absolutely bonkers. But I mean look at her. Orange is totally her color! Which makes her O's lovin' daddy peacock proud! And at the end of the day...she's just too darn cute to let OCD me take my pictures and go home! She was an absolute beast on the field her first game. In there kickin' shins and zoned into that ball! So much so that the daddy next to me kept shouting "Who's that little blonde!! Look at her go!!" I just kept snappin' pics and smiling behind the lens. Cause well...she was MINE! The next game her true colors shone through! Dashing all visions of soccer scholarships in Bri-bee's future! Fashion design perhaps? As she was SO much more interested in checkin' out the other girls hair ...

Meet Julia... I know of her through another close IS/brain surgery mommy friend...we're a close knit group like that. Today is Julia's grid placement day with Dr. Rockstar and his team. The second surgery is scheduled for Monday. I know that her family would appreciate extra prayers or warm thoughts as they navigate these next few days... And for the extra interested...her mommy & daddy are keeping us updated here .

Am I the only one who dropped everything when I heard Infant (ile) Spasms get mentioned on the evening news tonight? Of course like all good journalists they (to borrow a word from a friend ) botched the name. Referenced as Infant Spasms. Rather than Infantile Spasms. That annoyed me. Click here to watch the clip for yourself.

Thursday is my super busy day. From start to exhausted plop into bed. Typical morning rush. Coffee. Trevy meds. Kiss the hubs good bye. Make sure the kids are dressed...fed...brushed...and ready to spend the day with Grams. That will be a post of it's own soon enough...how much Grams helps out & makes much of what I do possible. But not today. Today is about my Thursday Hustle. Trevy MUST lay down for a nap at 9am...with the goal of at least an hour rest. He has school in the afternoon...and if he misses his nap...it's pointless to make the 30 minute trek. While he's laying down I squeeze in a work out. Read and respond to as many emails as possible in 10 minutes or less. Shower. Make a valiant attempt at looking mommy cute...without drying or primping my hair at all. No time for frills people. Cause I've gotta run to the kitchen and make Trevy lunch-to-go. Usually a yogurt shake and pretzels. Or crackers. Or whatever I can safely (I freak out about choking hazards)...

He'd been standing at my knee for a moment or two. While I munched shredded wheat and checked my email. When I do believe he just pinched my leg on purpose. So I would look. Which I did. Into his adorable elfish face. Milk dripping from my spoon frozen in the middle of mouth and bowl. Have I ever mentioned that I am not a multi- tasker ? His eyes were reflecting something. And I was trying to cypher that something. I just couldn't put my finger on it. Seizure coming? I love you mommy moment? What is he trying to say??? And then he spit his binky out...grinned wider...and licked his lips. And it hit me! He wanted a bite of my breakfast! Call me crazy...but I do believe my non-verbal son just spoke to me! Although it turns out he's more of a fruit loops boy...

Spoke with Miss. Case Manager recently. While driving through the middle of a downpour. My ravenous rugrats in the backseat clamouring for McDonald's. They don't understand why this was more important than chicken nuggets. Why this could decide the fate of future chicken nuggets. Oh the oblivion of childhood... ::smile:: Miss. Case Manager assured me that all the necessary approvals have been processed. I mentioned the pending Neuro-Surgeon fee. She was surprised and replied that it would be a little bizarre to approve the surgery but not the surgeon. I couldn't agree more! Though I haven't heard from Dr. RockStar's coordinator yet. But at least that's one thing I feel more settled about. Not that Dr. Neuro-Surgeon was going to charge us an astronomical amount. Actually...I think $4000 is quite reasonable as neurosurgery goes. My chicken nugget lovin' youngins might not have agreed. Lucky them. ********** Had lunch the other day with Mrs. Coach. She read one...