Skip to main content

big mouth

Ugh!


Why did I have to go and open my stinkin' big mouth?!?!?!


I waited until the end of the week to bring it up. Not that I'm superstitious mind you.


I waited until Jonathan...


and Grams...


agreed.


Until it wasn't just me.


But Murphy's (freakin') Law. Shortly after (and probably before many even read the below post) I said it out loud that we suspected Vigabatrin was perhaps maybe could be doing something. Possibly. Trevy had a massive (over 40 seizures) cluster. And then later another.


And this is what it feels like to open your big mouth. Saying your hopes out loud. And then watching them crash around you again. It sucks!


Ugh...


But on a happier note. We close next week! And I couldn't resist stopping by our (almost) house since I was in the neighborhood anyway. Pure luck.


::wink wink::


I even let the kiddos run around our (almost) yard for a few. I was mid-buckle routine when an oil truck pulled up. I thought surely it was for the neighbors house. But it sure looked like he was on our (almost) property...so I scooted over to be nosey. And sure enough. He was pouring 100 gallons of heating oil into our (almost) tank!


But the thing is...


our (almost) sellers just told us that they were giving us whatever oil was left in the tank!


And they say the Spirit of Christmas is dead!


::smile::

Comments

Mama Skates said…
ugh about the seizures!

yay about the oil!

hope u have a FAB w/e sweets!
sharon
Melanie said…
give the vigabatrin increase a while longer to work. Daniel was on it also for 2 1/2 yrs. Perhaps he just needs the increase a few days to kick in. Don't give up hope that its your "wonder drug", sometimes it just takes the upping of it to help things out a little!

I know it sucks, but just keep thinking positive!!
Anonymous said…
Don't fret. There's those couple of days it needs to build up a level and then finding the right level is the hard part.

We're there with you. Emma's seizures have started again. She's been having them for 2 days now. So we're increasing her Topamax level and now I need to wait for it to level off in her system. That's the hard part.
Mrs. M said…
OH! It hurts when things are starting to look better and then they return to "normal" again. We went there again and again and again until finally things settled in. Hang in there! [Like you have any other choice?!:)] It's got to come....this has to be Trevy's turn to be seizure free! I'm praying this will be your Christmas/New Year's gift.
Wuhoo on the house/heating gift. How wonderful is that!? Congrats!
Are you in packing mode....the wonderful upside down, where's the kids, stop touching the boxes, packing mode? Good luck! I wish for you a smooth move with heaps of helpful movers/friends/family, etc. If I was in town...I would bring you a meal or an empty box or something.:)
labonte4 said…
D,

How many times have I done this! But...I'll never stop celebrating good days or giving up the hope they could...eventually...stay that way!

Keep ordering that cake! You guys will get there one way or another. These things take time, and LOTS of patience. Its just frustrating going through this process.
JSmith5780 said…
Ugh! Hopefully it'll still kick in!
Shanna Grimes said…
Oh, I guess I shouldn't have read out of order in my back tracking. I decided to scroll all the way down after realizing all the posts I missed.

I'm sorry hon! Ugh! There's still a chance tho. Let's not give up hope yet.

Warmth for the holidays, always a good thing! At first I had no clue what you were talking about. We don't use oil to heat out here. We barely need heat, period! Wish we did. I miss the cold and the snow!! Not normal to wear shorts on Christmas!

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...

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...

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...