Category Archives: Symptoms and Effects of Rett

Stop shaming us for being too busy

To-do list this week: Follow up with insurance company re: diapers appeal Follow up with DME supplier re: feed deliveries Follow up with hospital re: negotiation of large hospital bill Try for a 3rd time to get info from disability charity about completing portions of the Medicaid waiver application which I don’t understand Take Grace...

Epilepsy Mumbojumbo: Refractory or Intractable Epilepsy

I’m so absolutely wiped today so this post won’t be full of the witty smartassy brilliance I know you love (eye roll) I’m just popping by to share some new words I learned today (tadaa!) Grace had her neurology appointment today and the Dr said something to the effect of: “…Grace’s intractable epilepsy…” “Her…what?” So...

Deck the halls with broken femurs

“I have little bones” -Dolly Parton From our family to yours, a few ideas for holiday activities: Decorate cookies Ice skating Caroling Family game nights Watch your daughter suffer the most excruciating pain possible for a week before finding out she’s broken both femurs Ya you heard that right. Grace broke both femurs during a seizure...


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