I’m not sad. I’m angry with Rett Syndrome. We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; Continue Reading
My heart broke, but not for Magnolia
Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark Continue Reading
Better belly happy mommy
If your doctor ever prescribes you Flagyl, know that you are about to imbibe a nasty liquid. Everyday for the past two weeks we had to basically hold a pep rally in order for her to take her belly medication. Continue Reading
One little pill
What a difference one little pill has made in our lives. Two weeks ago I lowered Magnolia’s seizure meds. She was taking 3 pills in the AM and 3 pills in the evening of Topirimate aka Topimax. She now takes Continue Reading
Seizures, part 2….
Today we are 10 days free of seizures (that we know of). After the last hospital visit and 48 hour video EEG, the doctor said they were happy with her meds. AJ and I were both happy, confused, and nervous. Continue Reading
