Just heard from our neuro...Ganaxolone study won't be starting until LATE June or early July.
So. Very. Frustrating.
Tuesday, May 22, 2007
Sunday, May 20, 2007
More big news!
Lily Bean is WALKING!!!!!!!!!
She has taken up to five steps now, and gets more and more proficient at it every day! She pushes up to stand from sitting (to a squat then up to stand) and can stay balanced at standing for quite a long time now!
It's very, VERY exciting around here!
We're moved into our new house, and are trying very hard to get settled as quickly as possible (which actually is very slowly because it's just plain Hard with two two year olds!). It's wonderful living next door to my parents of course, and even better having so much extra space. Lily tolerated the move very well, but Mr. Hank had a hard time with it. Now that it's been a week things are back into a nice routine.
No news on the Ganaxolone front, or even on the neuro front. We had an appointment w/our neuro at the beginning of the month, but we decided (with his blessing) that it really was pointless for us to come in right now. We're in touch with him via email weekly, and really, until we get the Ganaxolone going, we're just in a holding pattern.
We have started giving Lily Acai juice daily, after reading about some folks who've had success with it on the Yahoo Infantile Spasms Group. We do believe it helps keep the number of spasms down. We aren't seizure free on it, but if we miss a day of juice, it seems the next day is worse w/seizures. Of course, this is all very unscientific but when you are a parent dealing with this every day, you get to be unscientific. :)
And, since starting the Acai and also since her walking is getting much better, we've seen a big return of her babbling. We're hearing lots of ba-ba-ba-ba and ma-ma-ma-ma and wa-wa-wa-wa. It's great! Language is obviously a good indicator of healthy neurologic development, so this is great for Lily.
We should be hearing about Ganaxolone in the next 10 days or so...hopefully we'll be starting it in a couple weeks! WOO!
She has taken up to five steps now, and gets more and more proficient at it every day! She pushes up to stand from sitting (to a squat then up to stand) and can stay balanced at standing for quite a long time now!
It's very, VERY exciting around here!
We're moved into our new house, and are trying very hard to get settled as quickly as possible (which actually is very slowly because it's just plain Hard with two two year olds!). It's wonderful living next door to my parents of course, and even better having so much extra space. Lily tolerated the move very well, but Mr. Hank had a hard time with it. Now that it's been a week things are back into a nice routine.
No news on the Ganaxolone front, or even on the neuro front. We had an appointment w/our neuro at the beginning of the month, but we decided (with his blessing) that it really was pointless for us to come in right now. We're in touch with him via email weekly, and really, until we get the Ganaxolone going, we're just in a holding pattern.
We have started giving Lily Acai juice daily, after reading about some folks who've had success with it on the Yahoo Infantile Spasms Group. We do believe it helps keep the number of spasms down. We aren't seizure free on it, but if we miss a day of juice, it seems the next day is worse w/seizures. Of course, this is all very unscientific but when you are a parent dealing with this every day, you get to be unscientific. :)
And, since starting the Acai and also since her walking is getting much better, we've seen a big return of her babbling. We're hearing lots of ba-ba-ba-ba and ma-ma-ma-ma and wa-wa-wa-wa. It's great! Language is obviously a good indicator of healthy neurologic development, so this is great for Lily.
We should be hearing about Ganaxolone in the next 10 days or so...hopefully we'll be starting it in a couple weeks! WOO!
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