Thursday, June 11, 2009

Miscellaneous Update

So, no news is good news.

Our last shot of ACTH is scheduled for Thursday, June 18...just one week from today. Only seven more shots to go! Yippee!

I talked to Dr. LePichon today - just about some random questions we had. The last time we talked he mentioned maybe getting her in for another EEG once she's off the medicine. Since that is coming up soon and he's going to be in France for the next month or so, I wanted to get clarification on when that EEG should be before he left the country. He said that we'll have to wait for the next real opening, which will probably be in August. He reminded me that Kylie had been getting special treatment, but since there is no longer a need (as of right now) to expedite the process, we'll have to get on the "regular" schedule. Fine by us.

We also talked about some of the stuff we'll have to look out for in the coming days, months and years. Without getting too much into specifics, it was a mixed blessing. As I mentioned before, what lies ahead could be terrible (Lennox-Gastaut), but is also something that will be hard to miss. I believe his words were something along the lines of "blatant, you will know something is wrong with your child". While that is immensely scary, it also put us at ease about having to watch, and therefore question, every little move Kylie makes. We also asked if catching "what could be coming" early on would be as helpful as it was with catching the initial spasms. He told us that for better or worse, it does not make a difference when these things are noticed. Jody breathed a huge sigh of relief with that news.

Lastly, here's a little snippet of Kylie's latest favorite game.

Bouncing...

video

Notice the cameo by me towards the end of the program. I'm awfully odd.

Thanks to everyone for all the thoughts and prayers. God bless!

1 comment:

celinaricardo said...

that's the cutest bouncy. Looks like she was having a great time :)

 

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