happy being trevy

Spray Away Fill an empty spray bottle with water. Show your toddler how to spray out a mist with their index finger on the lever. And then let him go to town! May be more appropriate for outside play! Sponge Splash Another outside goodie. Give your toddler a bowl of water (unless you get bored with the spill it fight...then use his baby pool!) with a variety of sponges in it. Show him how to squeeze the water out of the sponge with his fingers. This is a great fine motor activity! Tear It Up No worries if your little one can't quite manage scissors...give him pieces of paper and teach him how to tear it up! Which is not just fun...it's fine motor fun! Self Contained Save your empty (washed of course) containers and lids. Keep these in a special box where your toddler can learn to match lids & containers. And if they're screw tops...even better! Pinchy Pins One of the great toddler fine motor activities! Take a medium square of corrugated cardboard (anybody have diap...

My mom called me this morning. She wanted me to know that my grandmother (her mom) is very sick. She had a heart-attack recently. And has since struggled with fluid build-up around her heart. It's serious. To the point that Grams is making the trip to Buffalo solo. If you're the praying type...I'd appreciate any prayers you can lift on our behalf. For safety. Health. And most of all Grace & Peace. ******************** Dear Grandma... I wish I could be with mom. To hug you. And give you flowers. Or a balloon. I know you understand why I can't right now. I've wanted to say thank you for a long time now. It means the world to me that you follow Trevy's blog. And pray faithfully for him. For us. Thank you, Grandma... Now it's my turn to pray...for you. Much love... ...danielle ************* Mom... I wish I could be with you. Be safe. Call often. We already miss you...and not just because you're our go-to sitter either! And remember t...

I am SO glad yesterday is behind us. It didn't start out badly. Yesterday. Actually...we were off to a good start. With fun things in the forecast. Jonathan had an early morning Bible Study. The rest of us normally tag along too...but I wanted to make sure Trevy was well rested for the cook-out fun later. So I stayed home. Which allowed Trevy to nap. I woke him a wee bit early...so we could shoot down to Grams' house. Where Toby (and Bristel) had spent the night. Squeezing every drop outta their cousins-in-town-time . But Toby had baseball practice. And since his team made THE CHAMPIONSHIP game...skipping was not an option. Jonathan caught up with us...which I love. Cause it just feels right to be there together. As a family. And we always get a chance to talk while we watch. After practice we jetted right over to Grams'. Where the big family reunion cookout was going to happen. Trevy was zonked from playing at the field. He still takes two naps a day. ...

Trevy finds such comfort there. Snuggled up in my lap. It's kind of our thing. Whenever he's feeling insecure. I know by the plopping in my lap. Sometimes he'll even take my arms and wrap them tightly around his tummy. Like a seat belt made of mommy. Whenever he's about to start clustering. I mostly know. By his body language. And I'll position myself so that he can melt himself into his safe zone. My lap. Whenever he's tired. He searches out my lap. Even when he's happy. But needs some snuggles. Into my lap he'll plop. Which explains the coffee stains on the couch. But he mostly likes lap snuggles when he's clustering...or insecure. The thing he doesn't know. Is it's not just comforting to him... And today...I've needed our lap snuggles. Just the two of us. Where we don't need words. Cause snuggles say it all....

So this is yesterday's news to all my facebook -y friends. But when something blog- alicious happens...somehow facebooking only satisfies for so long. Maybe it's just me though? Anyway... I was busy bee- ing . Scouring the house for the family visit this week. I have a tendency to zone. I used to be able to multi-task. Not so much any more. Anyway...I had just run back downstairs with Trevy . Fresh from his afternoon nap. And set about color coding the coats in the closet. I know ...I have issues... Such as...I can only go five minutes max before checking my email. Which is why I stopped on red and bounced to the computer. I was engrossed in a message just in from a friend I haven't spoken to in ages. Her youngest son has been having seizures. Which is probably why I was so glued... When suddenly Bristel yells... Mommy...the baby gate to the kitchen is down! And in that moment my mommy instinct went hay-wire. My thoughts were all nano -second mental pictures. Mostly of ...

How bizarre is it that Trevy knows how to snap his stubby little digits?! He can't say "mama". But he can snap! It's a recent skill addition...which is why we all go ga - ga every time he does it. Which of course...is only when he pleases. Or someone hums the "A B C s". It's all about the little things...right? Anyway... In other news... I have a major hectic week ahead. In fact...I was going to enjoy the free mansion tour perk of living in lovely Newport County. But frankly...I'm zonked. So I canned it. I mean...it's not like the mansions are going anywhere. Right? And besides my week is already chuck full of fun! We have the withdrawal seizures...which I thought we were escaping until today! Then the CO2 labs to re-do...because they were low...which if we can't bring under control could mean major headache. Family coming to town. Zoo field trip. Various therapies to squeeze in. Toby's team made the play offs...games games everywhere...

I took the kids to Walmart to pick out some Father's Day stuff. Candy. Cards. Yada yada... Bristel was assigned finding a card for PopPop... Toby...daddy... He was SO excited at discovering the perfect card that he begged to read it out loud. Right there in the middle of the (jam packed with girls) Hallmark aisle. His card. To his daddy. And so he proudly read... Hand in hand, we've met life's changes and challenges. Side by side, we've shared our most precious dreams. Together, we've made a beautiful family and a loving and lasting partnership we both can depend on. Don't get me wrong. It was super sweet. But honestly...the hilarity of my eight year old son choosing a sappy romantic card to give his daddy... Well...it just slayed me. To tears. Buckled over...stomach clenching...girls gawking...and giggling behind their hands...tears. When he flipped it open and read something about "to my husband" he finally got the joke too. And of course he then ...

To fully appreciate this little story...I have to take you back a couple months ago... Way back to Trevy's last in-patient stay . Which was a dual purpose visit. VEEG. The results of which still make me sad every time I have to go remembering. And introduce Banzel (Rufinamide) . Dr. Neuro had concerns because Trevy is SO young. I also think she has a soft spot for him...and wanted him monitored during the initiation phase. *** This is where I insert a little insider seizure parenting tip . Always always keep the phone numbers of the pharmacies you frequent most in your cell . Or day timer if you're old school like me. Or where ever you find most handy. I say this...because if you have a child with med-resistant (refractory) seizures...chances are you'll be using funky drugs. In funky-er dosages. That your pharmacy on the corner may not have in stock. And should you have already introduced said drug compliments of the hospital pharmacy. Because they had a h...

8 months. 8 glorious months. 8 glorious delicious months. 8 glorious delicious ly free months! 8 glorious deliciously seizure free months! GONE. Just like that. Well...not really just like that . And that's my point entirely. See...this post has stewed & swirled in my heart for a LONG time. But just as I would start to put words to my heart thoughts (which isn't as easy as it may seem). I'd click delete. Believe it or not...I don't enjoy being disliked. Or making waves. I'm ultra susceptible to soul conflict, you know. I've heard moving to the Nebraskan wilderness is a potential cure? Someday perhaps... ::sigh:: But then again...maybe you can take the uptight New England girl from Upthebootville...but you can't take the...well you know the rest! Here's the thing. Even though Trevor was labelled lucky four injections into our first round of Acthar. My heart could n...

Have I ever mentioned that I HATE weaning meds ? I know we're still rookies in the world of trial and wean. But if I've learned anything after FIVE failed meds ... it would be that (for Trevy ...and us) weaning sucks! Sucks! Sucks! Sucks! It drives me bonkers that a drug ( Banzel ...written dripping with sarcasm because I'm still bitter that it failed us!) which didn't do one i- oat -a of good...will most likely spend the next two months giving us hell! That Trevy's little body becomes attached to these hope pills. Which aren't any hope at all if you ask me. Taste nasty. I know...cause I've licked the applesauce concoction that Trevy always tries to (and sometimes succeeds at) protest slap off the spoon onto my lap. No wonder we have to force feed em' to him ! And then if they do help...it's always gone in a flash. And once you've started down the road of failed AEDs ...the reality is the next one has a chance of zero to nil of wo...

The Preservation Society of Newport County hosts Newport County Days at the Mansions June 21st & 22nd all residents (with id) of Newport County can tour the mansions located in historic downtown Newport for FREE ! Click here for more information on the mansions & the Preservation Society. Newport County consists of Newport, Middletown, Portsmouth, Tiverton & Little Compton

Sooooooo... went to Old Navy today. WITH ALL THREE KIDS! Am I certifiable or what?! Anyway...learned a juicy lil' secret while I was there... Oh...you know you want in on it! Stop playing coy! Saturday June 20th... Old Navy presents... onedaywonder! All women's, girls and toddler girls ribbed tanks are just $2! That's super cute-ness for just two buckaroos, girls! How can we resist?!?!?! Although there is a limit of just five per customer . I recommend taking your man out for his Daddy's Day dinner early! Near an Old Navy...*wink* Oh and last thought... DO NOT try mix & matching the flip-flops! Evidently...to get 2 for 5 they have to be two of the SAME. ie...2 boys flops...or 2 girls flips. Not one of each! Like the good Lord blessed me! I thought that was bogus ! But I'll release my grudge long enough to stock up on cutsie $2 tanks! Especially since the sun finally decided to make an appearance today!

Okay okay... I'll finally admit it... I'm on FaceBook... And I like it! It's been fun re-connecting with old friends (hi guys!) ... and staying connected with my new friends! For me...it adds a bit of whimsy to my IS family-ships. Not all the heavy forum chatter. I enjoy knowing what you're cooking for dinner...and flippin' through your pics...cause I'm nosey like that! And if you haven't already added me...and would like to... Simply click here and ask! ( oh...and ps...you don't have to be an epilepsy mommy or daddy to add me either! If you've connected with our family...I'm kewl with that too! *wink*)

With summer fast approaching...I thought the locals might enjoy checking out... imPOSSIBLE DREAM playground "The imPossible Dream Playground, Rhode Island's first integrated playground, offers an environment that is play friendly for children of all physical abilities. The playground is filled with swings, slides, see saws, sand boxes, fantasy play houses, miniature golf, an activity center, picnic areas, and accessible rest rooms." ...read more parent reviews here We've definately added a romp to imPOSSIBLE DREAMS playground to our must-do summer list!