Ethan still fighting...

[Rhea]

Little Ethan, who is now 9 months, and not so little- is still fighting. Because of the ACTH, he weighs 29 lbs. Even his rolls have rolls!!! No, it's not cute, he's beyond pudgy and people are really MORONS about it. But, anyway, I digress.
Next week, he will start weaning off ACTH. His last 2 eeg's show no spasms and very little seizure activity. WOOHOOOO He seems a little happier, and more smiles. He definitely is observing his world. Dr. says he sees no evidence of retardation, Ethan SHOULD be able to learn. The very low muscle tone may be a hindrance, but we're already working with some exercises and therapy to strengthen these. He is vocal with different noises for different reasons. He will "growl" if he likes you. He will "grunt" if he wants more food. a variety of different sounds and expressions. We still have a long way to go, but not as far as before!!!

[neilB]

Sounds GREEEEAAAAT! (My attempt at Tony the Tiger). I bet you are feeling pretty good yourself!

[Nakamova]

Great news, it's lovely to hear of his progress.

[Rhea]

We're currently weaning off ACTH and onto Sabril. Still some seizure activity, still some infantile spasms. But, still no hypsarythmia. He's very floppy. low muscle tone and not using his extremities much. But, he's still fighting. He and my daughter have moved back home with us, so I get to see him all the time. The ACTH really did a number ion him as far as side effects. Hopefully, they will all go away with time. We're still praying a lot, still believing.

[Kareen]

God is good, I have seen many miracles in my son's life,will be keeping little Ethan in my prayers.

[RobinN]

Fight on Ethan!