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...