happy being trevy

This time of year always has the sappy oozing right outta me. I adore the holidays. The shopping. The Christmas-y cartoons. The houses all a-glow. It's the one time of year that I actually like cluttering up my house with stuff. Cause it just looks so pweety. What can I say...I'm just crazy like that! But in particular I have tons of fun celebrating family traditions! And so I introduce our just implemented this year cause I stumbled onto a blog and thought it was too cute not to tweak and make it our own which is good cause I'm totally bored with the corn kernel thingie ... Thanksgiving Tree A coupla weeks in advance we (meaning mommy & kiddos) went on a nature walk. And collected fallen branches. Once at home...we placed the branches in a vase to wait until Thanksgiving Day. Cause I'm all about the build up too. On the big day after most of the feast was well under way...we (again meaning mommy & kiddos ::smile:: Daddy was on the phone with fam) traced hand...

Am I the only one feeling like I can't get everything done in a day that needs doing? Why is it that I love this time of year again? Cause seriously...I'm frazzled... It's business as usual with Trevy therapies & classes Our house (wooooow! Goosebump city just saying it out loud!) passed the Saturday inspection with just a few minor things to get taken care of. We've gotten the two thumbs up regarding our financing. Just a few more details to work through. It's quite stressful btw...ugh! And I'm SO having cold feet moments! I mean...I get nauseous buying a car for crying out loud! Our close date is set for December 18th...sooooooo could we be in by Christmas? Any takers on help with the painting?! I'm tempted to just cancel Thanksgiving! Or head to the nearest Cracker Barrel! We go to Boston tomorrow for Trevy's repeat 3T MRI. Think of us please...I'm not looking forward to this again. Although the IV team is supposed to be on hand...but I hav...

The Happy Incident Sometimes my mushy brain gets the best of me. Which is precisely what happened for Trevy's Speech Therapy this week! I booked it right smack in the middle of his nap time. So needless to say he wasn't very cooperative. Although he was groggy-happy to see Ms. Speech and all her toys. And we just went ahead and slogged through the session. Sleepies tend to bring on seizures. And at one point... Trevy did what he often does right before a cluster. He toddled over and plopped in my lap. Started smacking his lips. And picking at a toy. It's almost like he's sleep walking. A part of him is there enough to know where I am in time & space to find his way there. But another part is lost in seizure land. And his little eyes & face look vacant. Now... I know these cues like the back of my hand. To me it's all unmistakable . The lips. The missing Trevy . All of it. But the amazing (in that happy-heartbreaking sorta way) was that Ms. Speech NOTI...

And the first dose (which is 1/2 a sachet) is successfully in... So I guess... here goes nothin' Vigabatrin...

It's funny how our lives intersect in the most unexpected ways. If it weren't for Trevor's IS diagnosis...which resulted in my friendship with Shanna from G5...I never would have stumbled onto Mama Skates site. Our paths never would have crossed. But they unexpectedly (to us let me add) did. I believe they were meant to. And I was taken by her charm...and wit...and cute glasses...and oh my word cakes immediately! Sharon...I've grown to adore you over this past year. And your family. You've walked by my cyber-side through these months of sadness...and happiness...and stress...and have always been a ray of sunshine in my life. I want to be that for you too! I'm praying with every beat of my heart that this isn't cancer...that you caught TB from me! I've been to crazy exotic TB saturated places after all! I don't know the Plans that are written for your life, sweetie...but I'm so happy that I was given a part in it... And I'll be on my knees fo...

It's official. Dr. Neuro will be faxing the script to MastersMarketing sometime today. Or so she told me during our phone convo last night. We chose Masters because they're the least expensive. Although to be honest...I was beginning to have my doubts. Because the user friendly seemed to be missing! I finally decided to call the toll-free number...where I was prompted to leave a message. I did so last Friday. And frankly...by Sunday I was annoyed. Not that there wasn't a little part of me that thought leaving a message would never amount to anything anyway. But still... My son's having too many seizures every day...and I just want to move forward already! And then Julie emailed! (when you have three small children email works WAY better! And I'm SO glad I thought to leave it! That's my tip - always leave an email addy !) And since then it's been a breeze. She'll be handling Trevor's case personally...and we've been in constant communication!...

Mike (aka that marrisasbunny guy) has a passion to spread awareness for Infantile Spasms. And his creativity & heart have accomplished just that! Including this segment with Yankee Magazine which went live today. Thanks Mike...keep it up! (not that I expected you wouldn't...*smile*)

I'm a bit addicted to organization. I can spend hours re-arraigning drawers...closets...shelves. Just for the fun of it! But for some reason...when it comes to all things medical...I seriously have a mental block! You know those cute little wallet sized immunization cards you get when you have a baby? I've had three chances to actually use them. Instead...I tend to lose them! Every now and then I'll think to myself... You really should do a better job keeping Trevy's records But it's fleeting. And other than purchasing an over-sized three-ring binder...I haven't really tackled the job. Possibly because it feels so daunting. I'm not really sure where to start...what's important to have...how to ask for the information...what to expect when I get it? So you don't think I'm a total slacker ... ::smile:: I have every single EI report filed in the binder. And I did ask for a copy of Trevy's last (completed) MRI. Which came on a disk. I also hav...

one year ago today our world crumbled around us. And suddenly the tickets back to Tanzania we held in our hands...were no longer our future. It's taken a while to settle into that. I told Jonathan that in many ways we're still shedding our missionary skin. Because one year doesn't erase eight. And one year ago...everything changed. One year later...it's feeling less crumbly... ::smile::

Toby: Can I go outside? Me: Did you brush your teeth? (I like to ambush ask!) Toby: Does my breath smell bad? (nice evasion technique!) Me: GO! (cause mommy's onto you mister!) ::grin:: ************************ The Scene : Toby was being extraordinarily obnoxiously loud. Typically I'd send him outside to burn off the energy. But it's cold (and wet) up here. In the NorthPole! So instead I made him do ten push-ups. To my satisfiaction. I know...I'm such a meanie! ::wink:: Toby: (looking much more downward dog than plank) one Me: (smiling smugly) Toby: (breathlessly) two...three...four...all the way to ten Me: Okay...you're done... Toby: Shew (wiping brow dramatically and crumbling onto the floor) that really taught me a lesson! **************************** ***************************** The Scene : Bristel standing behind me with a litter of her little hair clippies & bows & brushes. She's playing stylist with my still-wet-cause-I-never-have-time-to-...

UGH! This is the life of a parent dealing with seizures. Because neurology is many times (especially in the world of IS) a very subjective field...much of the decision making is placed on mommy & daddy's already loaded shoulders. Choosing the right med is one of those HUGE decisions. But the choice gets even more complicated when you add in the generic options. Which is why I'm linking Jen Smith's insight gained at an epilepsy conference where the topic of which to choose was highlighted. Thanks Jen for sharing the info!

It took us all by surprise. The closing of ClubSprouts . I was selfishly heartbroken. I loved that it was, like, two minutes from my house. And that Trevy enjoyed the class. And the teacher. And that Bristel always had a blast. And that they had a big play gym that EI kids could use during open times all week long! It was fab! And when they closed...the three of us were really sad. But then I learned it didn't matter because our EI program can no longer afford to pay for non-EI affiliated classes anymore anyway. And with the monthly Vigabatrin bill looming...neither can we. So anyway...our EI case manager came up with a Plan. She would host her own music class. At their little office. With only EI kiddos & sibs. Which sounded great. Trevy loves music so I was game to give it a go. Although gotta admit...the 20 minute drive is much less enjoyable than the 2 to ClubSprouts! ::smile:: But Ms. EI was really excited. And had already outfitted the room with foam ABCs and musical inst...

again. think. its a good idea. to take all three children to the library. At the same time... by myself?!?!?! You all have permission to happy slap me! In the meantime...I'm printing that lil' thingie down there to relieve some of the tension! Depending on your day...feel free to do that same! ::smile::

Toby's Earn My Gameboy Back Financial Presentation Sweep $1 Clean all doors $2 Watch Trevor for 5 mins .25 cents Help set the table $1 Clean the toys .50 cents Clean the table .30 cents Wash the dishes .10 cents

Toby's Christmas wish came true last year with the unwrapping of his very first Gameboy Advance. There's no doubt that it was a hit gift! The little blue box has practically been glued to his arm since the unwrapping. With one exception. He never puts it where it belongs when he's done with it. And we've tried everything to help him remember. Grams bought a special bag. We've hid it on him when we found it left out. Grounded him from it for extended periods of time. Which I might add...feels much more like a punishment for us than him! Countless verbal reminders. Some on the louder-I-mean-business side even. And he's lost it plenty-a times. But in the end it's always turned up somewhere. Until last week... While we were out scoping potential first-time-home-buyer targets...Toby snuck the gameboy along for the tours. We told him to leave it in the car. So it wouldn't get lost. In typical seven-year old fashion...he didn't listen. And the inevitable ...

So I think it's safe to assume at this point that Trevy's increase in seizures the past couple weeks was definitely connected to a brewing ear infection. I think we're settling into a 40-ish daily range. As our current baseline. And the bizarre-ness of being happy about that number doesn't escape me! ::smile:: But we SO are! Because... seriously ...40-ish is so much better than ALL day long-ish! ****************** On topic... Dr. Neuro emailed yesterday to let me know she's waiting to hear from Dr. Boston. Trev's most recent EEG is waiting his reading. Buuuuuut...she did show the EEG to Dr. G (B...you need to help me think up a clever nick for him! Like maybe Dr. Hmmmmm let's not be so agressive? :) from our local neuro team. And Dr. G agrees that Vigabatrin is the next best step for Trevor. Sooooooooooo... Hurry up already Dr. Boston!

Last month I posted a local community fundraiser event for some very special...close friends. Actually...James' mommy & daddy were the first non-family people we shared Trevor's IS diagnosis with last winter. They came to our home immediately that night...with Dunkin' Donuts comfort coffee in hand! A friendship that started before that sad frosty night...deepened after. Which is why I'm SO excited to share about the amazing gift they recieved last week. After watching James' story on the evening news another family in the community donated a Special Needs van to James! James' dinner will still be held...and the monies will be needed to fix the new wheels up for James' specific needs! Trevy's fam is over the moon to see the community come alongside another family! And I'm here thinking we may just need to get James some new shades for his new ride?! Congrats James & fam!

The Study That Can Unlock The Mysteries of Epilespy What : The Study That Can Unlock The Mysteries of Epilepsy - hosted by BlogTalkRadio will be a segment focusing on the The Epilepsy Phenome/Genome Project which parents of IS children were encouraged to participate in...with the hopes of providing invaluable information for families living with epilepsy now & into the future. When : Wednesday November 5th from 8 -9 pm. EST ****************************** Just follow the hyper links to find the full information

We had a lovely visit with my Grandmother & mom's twin sister last week! They made the long trek from upstate NY to see us. ( btw Aunt Michelle...I'm really hoping you can figure out how to upload & email those pix! Otherwise your age'll show! ::wink:: ) In all the Trevy crank-i- ness I forgot to snap some photos myself. And I didn't get to spend near enough time catching up. But it was so cute...they follow Trev's blog religiously...so much so that Aunt Michelle noticed some of Trevy's seizure cues! And in a really sadly-sweet sorta way...it warmed my heart. Our home has been attacked by the sick- ies . Trev and his ear infection seem to be on the mend. I'm basing this thought on the fact that he's still napping...almost an hour after being laid down! We haven't had that kinda sleep-y success in over a week! But now Bristel is down for the count. With a fairly high fever. Which has me debating calling Dr. Pedi for a pee-pee test. Bri...

I love all 31 years of you!