Yesterday Gracie's spasms had decreased. Not quite true today. She had 20 before 9:30 a.m. This prompted a call to our pediatric neurologist as usually the steroid she is on makes them go away in about a week. Our plan is to continue with the steroid until next Friday. Gracie has an EEG on that day and immediately after we meet with our pediatric neurologist for results and to figure out where to go next. We have a few different options, one is we triple her epilepsy meds, the second is to order a different drug from Canada (not available in the U.S), but it can cause damage to peripheral vision, and third is to put her on a ketagenic diet - 75% of her food intake would be fat, 25% would be protein and carbs. As I understand it, we would need to be on this for about 2 years.
Auntie Arlene came to visit today. Gracie and Arlene played and Gracie had lots of smiles, she even danced and took a few steps for her. I think she was happy to have someone other than mom to play with. She fought sleep all day. She finally took a 30 minute nap at 4 p.m.
Gracie is starting to fight her injections. Can't blame her. I imagine her thighs are getting sore from all the pokes. Next is bath time. I'm hoping that will cheer her up. She loves to splash, splash, splash.
Love,
Lisa & The Fam
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