Nora had a long day at the doctors today. We had an appointment with the neurologist/ nurse practitioner at noon which of course took 2 hours b/c they were behind schedule. Emma was a trooper too, with only a few mild meltdowns. Nora had to have blood taken which is never fun. So she is taking a well deserved nap.
The NP answered all of our questions-mostly what happens now that she is off (or will be in a week) the steroid ACTH. Basically she'll have an EEG in 2 weeks to make sure there's no seizure activity and then probably another MRI in 3 months. We just have to watch for suspicious activities which could be seizures. That will be a challenge due to Nora and her crazy arms. She's bit of a spaz sometimes. I guess it takes a few months for the puffiness to go down but hopefully she'll start looking like her normal self soon. She and Emma weighed the same today at the doctor's office. 30.5 lbs. Nora is only 30 inches and Emma is 37 inches. Nora is a square basically.
She'll stay on all the other meds too-Zonagran for seizures, some blood pressure meds, (her b/p was still high but better than before) and Zantac for her stomach.
Other than our LONG day at the doctors, no new news. Emma is without a nap today so she's a bit crazy now. Hopefully it means early bedtime!
Happy father's day tomorrow!!!
Lori
This is Nora's story... Nora was diagnosed with Infantile Spasms April 24, 2007. Infantile spasms is a rare seizure disorder. Nora was put on an anti seizure medication April 26th called ACTH. Her seizures were gone after 1 week of treatment and haven't been back. Nora also has partial agenesis of the corpus callosum and arachnoid cysts in her brain. For more info, check out the history section below.
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