What's new?

Man, I'm terrible at updating this! We've had a whole lot going on but nothing at the same time. Caroline has some spiffy new AFOs! They are oh so tiny, and oh so adorable! Thanks to the AFOs she's now attempting to use her stander. She still isn't to sure what to do with it but with some work we can usually get her to calm down in it.

Her wheelchair has yet to arrive. Argh! I did talk to the equipment company a couple of weeks ago and had to pic new colors (woo hoo...the other ones were terrible!) and Monday I'll be e-mailing them to see if we have an expected delivery date.

We also saw Neurogenetics a couple of weeks ago. She had a few things in mind so once we get the blood work done (still waiting on the darn lab slips!) it'll take about a month to get the results back and then we may or may not have an answer. Sounds like she won't give up searching though like Genetics did.

Speaking of Neuro, we've had a lot going on with miss Caroline in the seizure department. Once those nasty steroids ended in September she pretty much quit eating. At her lowest she was down to 8oz a DAY. Topamax was the only thing that had changed (she was taking it while on the steroids as well but only got worse once the steroids stopped. It's also known to affect appetite) so off the Topamax she went and on to Keppra. She's been on Keppra for a month now I think and we aren't seeing any changes. In fact I think things may be getting worse. Her seizures are lasting longer and happening more frequently so I'll be talking to the Neurologist Monday to see what she thinks. She wasn't willing to give the Keppra much longer to change things before we found something else. I'm terrified of our other options. One affects sight and the other her liver. Hoping she has other things to try first.

This coming week we'll see the feeding team at the children's hospital. After she went down to 8oz we were able to get her back up to 20oz (still not stellar) but then she got a cold and went down to NOTHING. So now we're working our way back up again. We go back and forth between 16oz on a really good day (which is like once a week) to 12oz most days. Just hoping we find a solution for her because nutrition is so important to her development. Without it all the PT and OT is kind of useless.

I think that's all the updates for now! Phew that was a lot! I'll try my best to keep this updated on all the upcoming appointments.