We went to Boston today to make a next attempt at getting Gracie's seizures under control. It is such a blessing to have such a marvelous pediatric team right here in Nashua NH but also the experts in Boston so accessible to us (only one hour away)!
Our next steps will be: a sleep study to eval for sleep apnea, a sedated MRI to get a better picture of her right sided basal ganglia stroke and right frontal scarred brain, and a phase 1 video monitoring EEG. We're also maxing out her keppra and lamictal dosing (to much higher than she currently is taking). She may be a candidate for surgery to excise the scarred brain tissue which may completely stop her seizures... yikes! We'll cross that bridge when we come to it!
This neurologist also recommended getting an apnea monitor, an O2 sat monitor, and a pulse monitor, all with alarms as a step to preventing SUDEP Sudden Unexpected Death in Epileptic Patients (http://www.epilepsy.com/epilepsy/sudep_intro) and a step to helping Gracie's mama sleep better! I'm very happy with this solution!
Gracie also finally got glasses that fit her better and she likes wearing them! Apparently her eyes changed a lot, one of her eyes essentially reversed and she's now far sighted in one and near sighted in the other. This explains why she wouldn't keep the last glasses on!
Ana is a little monkey, climbing everything, giggling like her big sister, imitating talking and singing, fascinated with all music, and quite the eater and talker! At 9 months, she's still not sleeping through the night. She is SO adorable - she just never ceases to thrill us with her adorable-ness. Interestingly (other nursing moms will find this particularly humorous), she does say "Mama," but it means "food" not "mom" - haha! She has finally started saying "please" and she does it just the way Gracie does, by clapping her hands! So cute!
Our next steps will be: a sleep study to eval for sleep apnea, a sedated MRI to get a better picture of her right sided basal ganglia stroke and right frontal scarred brain, and a phase 1 video monitoring EEG. We're also maxing out her keppra and lamictal dosing (to much higher than she currently is taking). She may be a candidate for surgery to excise the scarred brain tissue which may completely stop her seizures... yikes! We'll cross that bridge when we come to it!
This neurologist also recommended getting an apnea monitor, an O2 sat monitor, and a pulse monitor, all with alarms as a step to preventing SUDEP Sudden Unexpected Death in Epileptic Patients (http://www.epilepsy.com/epilepsy/sudep_intro) and a step to helping Gracie's mama sleep better! I'm very happy with this solution!
Gracie also finally got glasses that fit her better and she likes wearing them! Apparently her eyes changed a lot, one of her eyes essentially reversed and she's now far sighted in one and near sighted in the other. This explains why she wouldn't keep the last glasses on!
Ana is a little monkey, climbing everything, giggling like her big sister, imitating talking and singing, fascinated with all music, and quite the eater and talker! At 9 months, she's still not sleeping through the night. She is SO adorable - she just never ceases to thrill us with her adorable-ness. Interestingly (other nursing moms will find this particularly humorous), she does say "Mama," but it means "food" not "mom" - haha! She has finally started saying "please" and she does it just the way Gracie does, by clapping her hands! So cute!
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Tabitha's "mama" has always meant "milk" :) It is accompanied by patting of the mama and frantic signing for more. Now that we're almost weaned, I'm trying hard to get her to really call me "mama" or "mommy"!