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::
7 comments:
ugh about the seizures!
yay about the oil!
hope u have a FAB w/e sweets!
sharon
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!!
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.
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.:)
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.
Ugh! Hopefully it'll still kick in!
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!
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