In 2015, I first started asking Grace’s doctors in the UK whether they thought she was developing scoliosis. They took the picture on the right and said no. Knowing what I know now, she actually already had quite a significant curve. Flash forward to moving home to Florida and meeting her orthopedic surgeon at Nemours...
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...
Over on our About Rett page, I discuss how Rett syndrome is NOT an intellectual disability (insert middle finger here). Hell, it’s not even a learning disability (not in the traditional sense – more on that later). RETT SYNDROME IS A PROCESSING DISORDER The number one most impairing thing about Rett isn’t intellectual impairment (what...
Grace is in the ICU in critical condition with aspiration pneumonia. And I did NOT see this coming. All this time, I’ve been afraid of the wrong things. I’ve been afraid of the seizures. Bracing myself for her next bone break. X-raying her spine every 6 months. Testing her for heart conditions she does not...
Note: this post has taken me 6 months to publish. It’s not pretty. A disclaimer about the names I will mention. Dr. Martul I noted his name myself. Dr. Peter Ellis was a name given to me by looking into her records. If that is inaccurate, it will have been a mistake of the hospital. Which, as you’ll see below,...
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...
“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...
