Bunnyblog

Terrible Migrations

Fri, 2 Dec 2011 12:39:44 -0500

We’re awash in doctors for the last few weeks for a few members of the family. Multiple neurologists, phlebotomists, various imagers, that kind of thing, so apologies for not updating as often as I should. Topping that all off, the migration of this very blog is going very poorly. Existing migration tools really aren’t accustomed to a iWeb blog this large and choke rather dramatically on it. The internal Apple migration is causing some troubles with updates too. It completely ate one I had over the thanksgiving weekend, and no wand waving is bring it back. In the future, I could always just publish to HTML and re-upload the entire 4 gigabytes of the blog every time I want to update, but that seems... less than optimal.

Marissa is about to have a big chapter in her life start. I don’t have a lot of details I’d like public at this moment, but her four year old self who’s starting to texture explore again will be turning a corner shortly. Don’t worry, I’m photo-documenting everything, and when I have times and dates worked out and it’s a done deal, I’ll post it all here. It’s bigtime, and we’ve been waiting on it forever. It’s stupid and juvenile, but I feel like if I discuss it, it won’t happen...

I remember 2 hours in my childhood seeming like an eternity. Today, it seems like a heartbeat. I’m watching my son grow up before my eyes. I wonder every morning when we all get up if they are taller today, and every day he seems like he and his sister are. He’s testing every boundary that exists, and a few that we haven’t set yet, but have to and soon. He looks at me while playing or inspecting whatever catches a toddler’s attention, and I almost feel like he’s begging me to keep up with him, keep up with what he’s doing, and I hope I am- there’s just always so much going on. The thought has occurred to me more than once to sell everything and move to the mountains where with any luck, life has a slower pace, because this relentless drumbeat is taking it’s toll.

Parties and Reflections

Thu, 17 Nov 2011 11:52:00 -0500

The Vimpat addition as mentioned a few weeks ago is a work in progress. I’m not sure it’s not making her twitchier, but the weather is changing and she’s historically crabbier during these times, so I’m not sure yet. Vimpat seems to be one of the slow titer kind of drugs, so we’ve just slowed it a bit further than we were planning.

While Marissa’s 4th was last week during the week, the clan got together to celebrate hers and her Mother’s birthday on Saturday. I still haven’t been able to collect the photos from Marissa’s Auntie yet, but I’ll post them here when we do. She was a good girl, which I didn’t think was going to be the case, but more on that in a little bit. She shared some rare smiles with her extended (and loud!) family, and we all felt better about life, at least for a little while.

The previous day, Marissa visited her school for an IEP. We were a bit early, and the IEP coordinator was a bit late, so we got a chance to tour the elementary school that my wife attended years ago. Obviously, there’s been a large tech insertion since the halcyon days of yore, but old schools are old schools, after all. Most every major school institution were in the same place, minus some new drywall that the fourth graders were performing the cha cha slide behind to celebrate the end of the semester.

Nothing terribly shocking in the IEP, as we haven’t had any developmental progress to speak of. Still using the stander, still getting the same amount of PT. We navigated the byzantine rules and bylaws behind medication at school and are going to sidestep it by moving Marissa’s med times around somewhat. Most of our paperwork was lost (again), so we’ve had to spend some time hunting it down and getting it re-faxed to the school. Long story short, Marissa starts school soon!

Marissa is 4

Tue, 8 Nov 2011 09:47:51 -0500

In the evening for quiet time, we try and find a family movie while we wind down. This week it was The Wizard of Oz, which my wife and I both commented was funny, because the movie in heavy rotation when Marissa was born was the same.

Today, four years ago, Marissa entered this world. We had been preparing for her arrival for some time and were expecting her in November, just somewhat later in the month. Just the same, mothers and doctors don’t always have the final word on when the baby is coming, so Marissa had the last laugh.

There have been so many ups and downs, but if you’ve been coming by for the last three and a half years, you know that already. At the most recent neurologist’s visit, Vimpat was added to her regimen and we’re still seeking the ideal dose on that, but it’s pretty clear that isn’t a miracle drug. We haven’t seen a tonic/clonic seizure like we showed you in the video for some time, almost two months at this point, but she’s far from seizure free. Another IEP is scheduled for Friday.

Through it all, this week, we party like it’s 2007. In 2007 we had a perfect little baby girl and we hadn’t entered this world yet. Family will come over on Friday and love on her, much to the dismay of her brother.

She deserves it.

Neurologist Visit

Tue, 25 Oct 2011 15:14:49 -0400

While we eternally wait for this or that for the kids, we’ve still got normal appointments for their care. Marissa’s brother is lucky and really only needs a pediatrician and the trappings of a standard toddlerhood. Marissa has her phalanx, and she saw her primary neurologist earlier today.

Still no sign of Lennox-Gastaut. No MRI abnormalities. A messy, very messy, EEG. We’re not done for the day, or even week yet, but these things are promising. We did add Vimpat to the regimen, so I’ll have to be sure to update my hazmat cleanup cards for the fire department in case the house burns down.

Not really, but I do feel like I’ve got a lot of odd chemicals in the house. More later this week as we run the gauntlet of tests.

Migration? Not so much.

Wed, 5 Oct 2011 08:53:36 -0400

So, the update and migration tool I was trying to use doesn’t do a damned thing. Sorry for the silence. Got caught up in medical issues not Marissa related and life- it’s okay, it’s (mostly) all better now, and not anything that won’t be resolved.

We still have to migrate, we’ve found a host and are trying various tools to get this (relatively massive) blog moved. Still not entirely sure what the solution is, though and I’m torn. The bigger the blog, the more complex the migration, and I’d rather not have the blog as it stands now mute and a follow-up someplace else. That doesn’t seem quite right, somehow. For now, more pictures of the kids. I’ll be back later in the week with a more substantive update.