Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Continue Reading
Allergies
Rett is an ever changing mystery – and it’s one we’re constantly trying to solve. Any little thing could be a clue to helping her with some of her symptoms. We obsess over it – just trying to do everything Continue Reading
The Chair
She’s been doing so well for so long that I was starting to feel like we had a handle on it and that we weren’t going to need to adapt her life around Rett Syndrome. I was starting to feel Continue Reading
CBS News
After I posted the video of Maggie talking on her Tobii, a reporter from CBS Local News reached out. She was fascinated by the technology, and after we shared our story, she was relieved, as are we, that we could Continue Reading
The End of Summer
Labor day has always signified the end of Summer for me. Though Maggie started school two weeks ago, it’s still Summer to me until Labor day. Looking back on it, I think we did a good job this summer – Continue Reading
DIY Supplements
In order to keep Maggie at equilibrium, she needs to take a swath of supplements. Currently she’s on 300 MG of Magnesium 5MG B12 Calcium Chewable Kids Chewable Pro Biotic 100 MG Iso-Phos 1100 MG of L-Carnitine 1600 MG Norwegian Continue Reading
Hope for Hannah & Gaby – REVERSE RETT LA
Last year when I reflected on the amount of money we raised collectively, I was proud to have been a part of Maggie’s solution, her hope. This event, which takes place in LA on October 29th this year, is a Continue Reading
An upswing
When Maggie had pneumonia a few months ago I actually thought it wasn’t that bad. She was sick for a month but the pneumonia part only lasted a few days. But soon after the pneumonia was gone, she started experiencing Continue Reading
Science updates
The past couple of weeks have brought some fairly promising news in the Rett Syndrome community. I’ll share it here with links so you can become an amateur geneticist too. 1) Trofenitide – one of the drugs currently in trials Continue Reading
Special Olympics
The Special Olympics were in LA last week. I’d never been; though I have oft times considered volunteering. When we first heard about Rett Syndrome, my dreams of Maggie someday competing in the Olympics quickly faded. I mean, the daughter Continue Reading