See Christian and Lola's ISR video!

Saturday, October 23, 2010


I love new things, but I haven't had many new things to report lately. Things are kind of in process right now.

I mean really we're just busy living life and planning stuff and in the middle of future goals and same ol', same ol' there's this weird in limbo land that we're living in right now.

As far as Christian goes, we were scheduled to begin HBOT when we got back from Michigan, but after discussing it and thinking it over, we decided to hold off. I'm really, really trying to zero in on one thing at a time because this throwing stuff to a wall to see what sticks is driving me crazy. I never really know what's sticking!

Our focus right now is the ketogenic diet. We're trying to get through all of the red-tapiness of it, getting records sent over from one office to another, getting in with the right doctor, scheduling a consult with the only scheduler for a pediatric neurology practice that spans two hospitals and like six doctors. So, it's been a lesson in patience but we're almost there. Just waiting for the date for the neuro consult. But what I'm a little excited about is that we may even be scheduled with either an epileptologist or a brain injury specialist. That's a little awesome, I think. Oh yeah, we have to schedule a consult in order to work with the dietitian who will help us with the diet. Next stop, an actual appointment.

That being said, we want to see if this diet is successful without any other variables like HBOT or different therapies or vitamins. So we're staying with status quo, adding the diet, evaluating the effect, possibly weaning him off the Sabril (Vigabatrin), and then we'll probably start with our mild home HBOT chamber and then add hard chamber treatments.

As for Christian - not a whole lot that's "new." That's not entirely true. He's moving a lot more than he ever has. He's moving his legs and his arms and reaching for toys and all that jazz, even more so than he's ever done in the last year and change. BUT his head control has gone funky. I'm really not sure what all that's about. He throws it forward and can move it from throwing it back to bringing it forward, but he's just not interested in holding his head up with any sort of consistency anymore. Maybe he's just saving up to show us something bigger.
So because we're in limbo and waiting for some things to happen, and there aren't any terribly new things going on (yet), here are some other NEW things...

We went for a morning walk for the first time this fall in our NEW double stroller, jammies, and blankets this morning. 

I'm slowly, but surely putting the kids' room together and the theme is Dr. Seuss, as I've mentioned before. So I ordered these NEW giant wall decals for the room and they came today! And just to show you how big they are, I let Lola crawl all over them so I could take a picture and show how giant these decals really are.

Along with the wall decals, we received Christian's NEW Halloween costume. He'll be moonlighting as Frankenstein this year.


So there are some NEW things to hold me over until some other NEWER things start happening.


Caroline said...

They look so cute together in the stroller! I love his costume!

Anonymous said...

That is the cutest darn Frankenstein I have ever seen!!! Love the costume.

Lisa & Brockman

Jen said...

The first costume picture looks like Frankenstein when they have him strapped down to the table.... all the power is trapped in there ready to be released as soon as he isn't held down... Christian has the power, I pray his tie downs will be broken off soon!!

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