happy being trevy

The constant... every other month... persistant... stinkin'... ear infections! That's right. Trevor has yet another ear infection. I think that makes 10 since last November? Almost one a month! But I am hoping this explains why we've seen such an increase in seizures. The worst part is...because he has tubes they won't just give him an oral antibiotic. Noooooooo...we have to waste 48 hours trying the ear drop method. Which has never worked for Trevor. Ugh! So wish us luck in the sleep depot tonight! Cause the night wakings of a seizure ridden kid... ...are nothing compared to that of an ear infected kid! ::smile::

After yeserday's random-nings post...I recieved an email with the below exercise plan... which I must admit sounds completely do-able! ::wink:: ****************************** Begin your routine by standing on a comfortable surface, where you have plenty of room at each side. With a 5-lb potato sack in each hand, extend your arms straight out from your sides and hold them there as long as you can. Try to reach a full minute, and then relax. Each day you'll find that you can hold this position for just a bit longer. After a couple of weeks, move up to 10-lb potato sacks. Then try 50-lb potato sacks and eventually work up to where you can lift a 100-lb potato sack in each hand and hold it your arms straight for more than a full minute. After you feel confident at that level, put a potato in each of the sacks.

Dr. Neuro called with Trevor's labs from the other day. His Zonegran levels are currently 23.3 And the *recommended* range is between 20 -43 .... so she wants to increase one more time prior to beginning Vigabatrin . So we're now at 75 milligrams twice daily. B reakfast & bed-time. Stirring in chocolate milk has worked like a charm! I'm not going to pretend I understand the whole concept of levels and such. Reality is...I don't buy t that they understand either. This would be why we play the upper-downer game. Constantly increasing...decreasing...cocktailing...doses of meds that are not recommended for children who have yet to reach puberty! But we do it anyway...hoping... And since we've seen some positive affects since beginning Zonegran ...I'm okay with sticking to it... Although it would be nice to see a decrease in seizures too! I've actually been wondering if Trevy's cold is to blame for some of it? If he's still snotty &...

The Scene : A bright & sunny Saturday afternoon Daddy: Hey...who wants to help me clean the car? Bristel : I do Daddy! (and she scampers out the gate hand-in-hand with Prince Daddy) Toby: Bristel wait...come back! (he shouts to their backs from inside the gate) Toby: I promise you it won't be any fun! Me: (thinking to self) I have totally got to get a chore chart together! You: any tips on putting such a thing together & into practical use would be most welcome! *********************** Trevor's seizures seem to be increasing. He can't go a full half-hour without having a cluster anymore. We're just waiting for the Vigabatrin green light from Dr. Neuro . *********************** Being a potential first-time home buyer is really fun! *********************** The Scene: Bristel pirouetting around the living room in her ballet costume. Bristel : Mommy...will you please sign me up for dance classes?! Me: Ummmmmmmm ....maybe later... Bristel : L...

I've made some very sweet friendships along this IS road. Sophie's mommy is one of them. I've fallen head over heels for Sophie and her family... When sadness has rolled in Sophie's mommy has been one of the voices I've listened to...and felt better for it. And my thoughts and prayers are with her (with you!) today...as Dr. Chugani presents Sophie's case for surgical candidacy. This is a huge...tummy in knots...day (and following) for Sophie & her family. I'm asking everyone who reads this post...to please take a moment & lift this sweet little family in prayer. For Grace...Wisdom...and Peace...as Sophie's life continues to unfold...

I've had heart conflict about Early Intervention off & on since I first learned of it's existence . From the beginning I bought into the concept. Provide foundational therapy to kiddos who have extra challenges...to lay the groundwork for their future education. I love that idea. And everyone told me Trev was exactly the kind of kid EI was in place to help. But deep down in the whisper region of my heart I felt...well... ... guilty . Especially during the time he was seizure free. Because even though he wasn't making forward developmental progress steadily or quickly. He was moving in that direction. More turtle- ish . Less hare- ish . But he was certainly in the race. And it left me feeling like a thief . Stealing services from families that truly needed them. In my pursuit to assuage the guilt complex I even asked to cut services at one point. At the time Trevy was only receiving OT, PT and ST once a month. But it made it easy to slash a therapy because I hated ou...

We (meaning Dr. Neuro in tandem with J & I) chose not to use a safety drug (like Topomax or Zonegran ) after Trevy's first course of ACTH. His seizures stopped so quickly...after just four injections. That was a good sign. And even though we wouldn't speak the words for fear of jinxing...we were all filled with Hope. Of course his persistently abnormal EEG always kept us guessing if it was the right move. Actually...Dr. Neuro recently told me she always regretted not extending Trevor's ACTH trial the first time. To see if perhaps his EEG would clear completely. She's not the only one second guessing. Because of course I wonder now if it would have made a difference. Adding a safety net. Maybe Trevy's seizures would have stayed in remission? But at the time...the side effects involved with the drugs felt heavier. And I didn't want to contribute to Trevy's developmental challenges. Every drug comes with the risk of inhibiting that very area. So we...

Our day started out so well too. Crisp autumny air. Colorful leaves fluttering. Trevor... who never sleeps in the car ...was snoozin' before we crossed state lines. Not too many cars on the road. Sundays are good for going to Boston. We made it to the hospital in decent time. Early enough to grab a coffee before heading up to Radiology even. Little did we know our day would end MUCH less peacefully. Let me first say...the staff at Boston Children's was wonderful. And we truly hold no grudges. But it was a terrible terrible day. Trouble started brewing when we were asked if we knew what kind of tubes Trevor had inserted into his little ears last Spring. Are you kidding me? I can barely remember my name! Well...evidently there are some brands that have metal in them? Good grief! And drat...why the heck didn't I think to ask about that! So poof went our early arrival. And from there things just got worse. The stress of being in the hospital must be a seizure trigger. Because...

I stopped by a friends blog...and found this beautiful quote! Karen...hope you don't mind the borrow! "I wanted a perfect ending. Now I've learned the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and a making the best of it without knowing what's going to happen next." -Gilda Radner

I feel so guilty even mentioning this... ...because I know so many parents who have to fight tooth & nail for their child to get just one EEG. And it seems like Trevy is in for a once a month-er! You must hate me! And while I cherish the access we've had to these kinds of invaluable tools...it makes me sensitive & angry knowing others are donning I'll fight for my child fatigues and going to war for just one ! This is one of those issues that I have soul-struggles about often. How to resolve the lack of real protocol when it comes to dealing with IS?! No parent has the same experience. And I feel to my core that there should be some absolutes! Like at least bi-annual EEGs ... if parents so desire . Or like genetic testing...minus the insurance battle... should parents choose to move in that direction. I understand that not every parent wants to pursue every option. But it would make those who do have less battle...more discovery...if it wasn't a fight. But an in...

I just couldn't update the blog after the Dr. Genes visit last Friday. I felt like I'd been hit by a bus. A really really BIG bus. It takes time to recover from something like that! ::smile:: And the thing is...we're still in an if-y zone anyway. Waiting to hear back on Toby's labs. If Toby's test reads positive... the same as Trevy's ...then this will all be a very-scary but very-moot coincidence. Dr. Genes spent over an hour explaining to me why she doesn't believe that will be the case. And yet because it could be the case... I mean how many odds has Trevor blown up already? What's one more? Soooooo like I was saying...because it could be the case...I'm waiting to worry until I know for sure.

We went history hunting for Columbus Day... Rhode Island is historically rich and we found this hidden gem. Founder's Brook is where the Portsmouth Compact can be found tucked away in a secret garden... complete with a babbling brook! We had the secret garden to ourselves... so we let the kids romp around...enjoying the remnants of summer warmth... Trevy would explore for awhile...and then come back for some snuggling I'm not sure why...or when...but it's become a habit to kiss his pudgy little hand. It's just our thing. We were so proud of Toby as he read the plaque with very little stumbling... not bad for a just beginning the 2nd grade-er! Toby & Bristel had to prove they could conquer the big boulder... Bristel is definately our clown. Her poses never cease to crack us up! Although... the natural pictures are awfully cute too! I love my boys... You can see it in his eyes... he was gonna book it ! that face is priceless! Grams captioned it "F...