Skip to main content

quick thoughts for the weekend

Cause it'll be all baseball all the time this weekend. Seriously! Not a bloggy moment to spare. Grams is due to arrive 8am-ish (Thank God for Grams'!) to watch the lil' ones. I told Jonathan last night...it'll be like a date! I'm easy to please...Little League games are right down my alley! But can you really blame me? All the cute boys...











Anyway...









Dr. Neuro emailed to say Trevy's co2 levels are back in the normal range! Yippee! I am just SO SO SO happy to hear that! I've been fretting. I did not want to pull the Topomax plug...for the first time in a long time we're in a good place. Seizure wise.









Which also struck me today. How somewhere over this past year I changed from chasing Seizure Freedom...to being okay with Seizure Relief. There was a time when I wouldn't be content with less seizures. Had to be all or nothing. And now here I am all happy that I don't have to axe Topomax...cause it's giving us less seizures.









Speaking of which...we started Klonopin last night. Dr. Neuro changed her mind from Depakote to Klonopin. Although she admitted that even if it helps it's not a long term answer for us. Like many AEDs it's a hard core highly addictive drug. BTW...I'm SO prouda myself. I'm such a new med chicken that I've never given a newbie without Jonathan. Until last night. Helps that it's a super yummy quick dissolve tab! I tasted it...just for funsies.











::smile::









Trevy is officially a druggie! Five meds...most at doses which would knock an adult on their tushie too! I know...cause a girlfriend recently trialed low dose Topomax for migraines. She couldn't hack it! Seriously...can you imagine the courage that courses through these kiddos veins...









Anyway...





Bring on the Cracker Jacks! After we force feed The Druggie of course...
Labels:

Comments

Bacon Wife said…
I am so glad you get to have a date! I am so thankful that his levels are back to normal. I was really praying for that! have a great day
Love ya!
C
July 18, 2009 at 5:32 AM
blogzilly said…
Am I gonna get a royalty on word usage? :)

Have fun at the games, and I get it...I haven't even been at this long at all and I would settle for some relief for the moment instead of freedom.
July 18, 2009 at 5:54 AM
Colby said…
Been there and done that to ALL of what you said! (little league games AND seizure meds!)

So glad the levels are OK....Isn't it funny how ELATED something like that can make us?

I wish the Topamax had helped Colby...Not only did it not lessen the seizure frequency, but it totally killed his appetite....When I tried it for migraine prevention, it DIDN'T kill MY appetite (Naturally...Need to lose some lbs!)...Didn't do anything for the migraines either...But neither Colby nor I had any other bad side effects...Except for one weird thing...My sis was also put on it for migraines...Neither of us could taste SOFT DRINKS while on it!!! Strange!!!

Depakote was no help to us either....No reduction in sz. and sent his platelets sky high...

As I have written before, Colby is on Clonipin now in addition to the others...That seems to be of some benefit...But like you say...Addictive...So....

Maybe the Top./Clon. combo will be the thing that will help....

And yes....Searching for seizure REDUCTION rather than FREEDOM is all I think we can EVER acheive in my home....But I do still have hope in a miracle!

Play ball, Toby!!!

Cyndi
July 18, 2009 at 1:44 PM
Danielle said…
C...we had SUCH a nice time on our LL date! Seriously! And we needed it... Thanks for all the prayers, hon. You know they're appreciated.

Kenly...I thought we were tight? How 'bout if I just hyper link ya every time I "borrow" your word? ;)

Cyndi...I'm crossing fingers that that Top/Clon combo will at least help his EEG for our Detroit trip. I feel SO stressed about that...especially after his last one was such a mess. It's just so hard to know...we can't see inside...ya know. Anyway...we're definately having less seizures per cluster and they have milded up a bit too. And it's making my heart feel a little bit lighter...xoxo

...danielle
July 18, 2009 at 5:45 PM
Mrs. M said…
So good to hear that despite everything the seizure cloud is lifting and letting his little spirit shine through!
Glad to read that you all enjoyed your all american date. Much deserved!
July 19, 2009 at 2:39 PM
Adesta said…
Glad to hear Trevy's levels have settled back to normal.
July 20, 2009 at 6:19 AM
Post a Comment

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...
27 comments
Read more