Pretty soon here, we’ll be hitting our 9 year D-Day anniversary. In the beginning, “hope” looked vastly different than it does now. A newly diagnosed mom recently wrote to me and said: “I haven’t read a single thing that has inspired me or given me confidence, as much as anything can with this ridiculous syndrome,...
Hellooooo friends! Wow it’s been ages. So much has happened. We’re in a beautiful home now. It was a really long haul to get to this point but we’re settled and happy. Grace is settled in school. The bus is working out just fine now. She has all her insurance and doctors and meds in...
?4 years ago I wrote a post called Retard. Read that one first, I guess? I’m in all these special needs groups on Facebook. There’s rarely an absence of at least one person losing their minds because they heard/saw someone say “retard”. I recently saw a woman posting a huge load of screenshots of a public showdown she...
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,...
CORRECTIONS :: in the video I said there is no calcium and actually each bottle has 75% daily recommended calcium. UPDATES :: This thickened up too much in the fridge so the next morning, the pump wouldn’t handle it. We left it to get to room temp and tried again hours later and still too...
Note: this post has video in it. If you’re viewing in your inbox, click here. Grace got her feeding tube 5 years ago yesterday. It was the best decision ever. Not only can we get medications into her without fighting, we can keep her hydrated and fed when she isn’t feeling well. And of course,...
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...
