Comments for Emma's Grace

Comment on Dr. Chugani – 5/18/09 by Lane F.

Lane F. — Sun, 06 Dec 2009 19:13:31 +0000

I googled Dr. Chugani and found your blog…brings back memories! My 15 year old daughter had a similar infancy as Emma…seizures at 2 months…infantile spasms…vigabatrin…developmental delays. My thoughts are with you as you your way through this…

Comment on Birthdays 2009 by danielle

danielle — Thu, 09 Jul 2009 12:42:56 +0000

How beautiful are your kiddos?! Seriously!

We have back to back to back b-days too. And next year I’m totally doing a joint party. Not whacky tabaccy joint…joint like together. Sheesh people! *wink*

Anyway…so nice that the kiddos still got to celebrate. It’s just not fair when mommy gets sick tho…

xoxoxo

…danielle

Comment on Bunch of Sickies by danielle

danielle — Mon, 08 Jun 2009 17:18:00 +0000

Yuckie…

hope you guys are all on the mend quickly!

Comment on May 22, 2007 by danielle

danielle — Mon, 25 May 2009 00:09:22 +0000

Your kids are cutting teeth. Mine are knocking them outta their heads! Sheesh…kids…

Anyway…

Happy birthday Emma…I hope mommy, daddy and your big bro spoil you rotten today!

…danielle

Comment on Dr. Chugani – 5/18/09 by danielle

danielle — Mon, 25 May 2009 00:07:50 +0000

I’m guessing you know me well enough by now that it won’t come as a surprise when I say…

I HATE WAITING!

And I hate that you’re stuck in the waiting game. When (ewww…I’m SO tempted to type “if”…but then would that be a bad omen? Not that I believe in voo-doo mind you…) I come to Detroit I’ll give you a big juicy Italian hug. It’ll make you feel happy! Promise!

btw…somehow I wasn’t getting the feeds again?! Ugh… I’m SO happy that you’re posting again! I love your thoughts…and honesty…

…danielle

Comment on May 22, 2007 by Kenneth Lilly

Kenneth Lilly — Fri, 22 May 2009 12:24:46 +0000

Happy Birthday Emma! My son Bennett is coincidentally cutting 5 teeth as well, and OMG is he in tremendous pain. Sucks, hope it ends for him soon.

Comment on Emma’s Story by Emma’s Grace » Blog Archive » May 22, 2007

Emma’s Grace » Blog Archive » May 22, 2007 — Fri, 22 May 2009 11:02:41 +0000

[...] Today, at 8pm, it will have been 2 years ago that our precious Emma Grace was born. [...]

Comment on Dr. Chugani – 5/18/09 by Andi S

Andi S — Wed, 20 May 2009 03:37:38 +0000

Kenneth, I’m sorry to hear about your son.

Please feel free to ask any questions or send me a message at any time. I know how overwhelming it can feel.

Good luck with Dr. Chugani. He is great! He even responds to emails, sometimes the same day.

Comment on Dr. Chugani – 5/18/09 by Andi S

Andi S — Wed, 20 May 2009 03:22:13 +0000

Hey Kim! Don’t feel dumb. It’s extremely difficult to follow.

Overall, not good news.

The EEG is still showing seizure-ish activity when she sleeps.

The PET scan showed that there isn’t one specific spot where there’s a problem. If there was, they would be able to disconnect that part. The disconnection would make the seizures stop, most likely.

The MRI shows that her white matter isn’t like a normal 2 year old. It’s showing it as younger. This could fix itself and mature up to where it should be. It could just be delayed and eventually catch up. It could stay like this.

We’re mostly back to waiting. Maybe running some blood work, but we don’t know yet. And we treat the symptoms.

Comment on Dr. Chugani – 5/18/09 by Kim

Kim — Wed, 20 May 2009 01:46:48 +0000

Ok I don’t understand much of what the report says! It makes me feel dumb. Is this good news?