Neuro, meds, therapy *head explodes*

I can definitely say it is never a dull moment around here.

I can also say I should have never written about how good things were going, because I obviously jinxed them.

First of all, thank you all so much for all your input on the preschool situation. I was surprised by how many of you with special needs kids have decided to homeschool them.  We’ve decided, for now, to keep Vista home in the fall.  This week has proven that preschool would not be a good option for her right now.

Her seizures a week ago have really changed everything.

We had our second session with Vista’s occupational and physiotherapists today at the Children’s Hospital, since her seizures.  She hasn’t had another seizure since we upped her meds, which is great.  Unfortunately, todays therapy session showed regression in her balance and motor skills, as well as behaviour issues.  Even more than last week.  Which is very concerning.  Why is she continuing to skill regress with no further seizures?

After half an hour trying to work with her, her therapists stopped the session and asked me to call her neurologist.  As a parent, when that happens, it doesn’t give you warm fuzzy feelings.

I put in a call to her neurologists office right away and then waited.

The call back didn’t take long.  I’ve discovered when the word ‘regression’ is involved, it never does.

Turns out, it’s not just the therapists who are concerned.

Her neruo is ordering a med change.  This means slowly weaning her off her current meds (goodbye sweet valium chocolates…*sniff*.  I shall miss you), and slowly adding in a new med.  I’m still waiting to hear what that new med is going to be.

And we get to make a trip to the neurologists office.  He’s not happy with the way things are going right now and wants to talk to us and evaluate her. So, tomorrow we’ll find out when that appointment will be.

While I’m happy that things are being done and they’re taking this seriously, the whole thing has throwing Bil and I into a bit of a tizzy.

We were comfortable in the knowledge that the clobazam was working for her and had stopped her seizures and regression.  Now that it’s not, it’s left us on tenuous ground as far as what the future holds for her.  I know we can only take it one day at a time, but when it’s your child who is dealing with all this, that’s a crappy solution.


And since I’m sick of being all ‘woe is us’, why don’t you head over to the BlogHer@Home site.

We’re giving away, hot off the press, Aidan Donnelley Rowley’s brand new novel Life After Yes!!

You’re definitely going to want it on your summer reading list, so you may as well win a copy, right?

The contest is open to everyone (American, Canadian, Martian, BlogHer attendees, those partying with us at BlogHer@Home, those who have never heard of BlogHer).  All you have to do is leave a comment on this post.  So go…shoo… why are you still here??

The Princess is in Da House!

Last nights BlogHer@Home kicked off with some great giveaways and some amazing people.  And some really stupid trolls.  But we’ll continue to ignore them.  (FYI, we’ll be password protecting the chat tonight.  Details to come)

Thanks again to everyone who’s come out to support us in that.  We’ve had so much fun doing it. And a huge thanks to all the amazing sponsors.  Without you guys our party would have been really booooooooring.

Welcome to all the BlogHer@Home people doing our Blog Tripping party before chat kicks off tonight.  *waves*

I was hoping to put up my own blog design before y’all came a callin’ but sadly ran out of time.  So you’re stuck with stock templates instead.

A bit about me, for those who haven’t been privy to the whining for the past few months.  I’m a WAHM (work at home mom).  I have a 2yr old daughter who keeps us on our toes constantly.  My hubby is Bil.  If you want to know about Sharepoint, go talk to him here.

That’s about it in a nutshell.  Yeah, I’m really not that interesting a person.  I just play one on Twitter.

Oh, and too all those people who said I have an accent…. DO NOT  *PFFFFFFFTTTTTT*

(yeah, I’m also real mature like that)

Still Alive

“…Now these points of data
Make a beautiful line.
And we’re out of beta.
We’re releasing on time.”

“Still Alive”
Jonathan Coulton

That pretty much describe what I’ve been up too for the past week or so.

Nic and I have been working like mad on our BlogHer@Home site.  What is BlogHer@Home, you ask?  Well, first you have to know what BlogHer is.  Simply put it’s a community for women who blog. Every year they have a big conference that sells out.  Tickets are coveted, flaunted, and fought over.  This year it’s the place to be if you’re in Chicago on July 24/25.

Well, Nic and I aren’t going to BlogHer.  And that sucks.  Hearing people talk about it constantly was a total bummer until Nic came up with the brilliant idea of creating BlogHer@Home.  So we whipped up a site, and have been working to get our BlogHer@Home gals some AWESOME giveaways (can you say 5 pairs of pearl earrings and a new laptop five times really fast?  No, me neither.  But I do know where you can win both those things for free!)

In addition to keeping all that straight, I’ve been helping Heather and Megan get their Friends of Maddie site up.  This is a wonderful charity dedicated to the memory of Heather’s daughter, Madeline.  Their mission is to provide support to the families of critically ill babies in an effort to help ease the transition into NICU life and to be an ally until the end of their child’s hospital stay.  As a mom of a child who was in NICU and Special Care, I know how invaluable this support can be.  If you have a moment, please take the time to visit and support this important cause.

I’ll hopefully have another post up soon, assuming I can find time to write and be in bed before 1am.

Hugs to you all for all your wonderful love and support.  It really means the world to me.

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