They thought they would teach their daughter about the world Instead they have to teach the world about their daughter
A recipe for a crazy but fun summer vacation. Ingredients One crazy independent toddler One amazing and strong kid with Rett, One busy, multitasking and exhausted dad One overwhelmed but happy mom Directions Knead all ingredients together. Add in a Continue Reading
Life can change at a moments notice. We try to take each day as it comes and make the most of it. There is no other way to put it, some days are just wonky. Sunday was wonky. Both of Continue Reading
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
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
I’ve learned a lot of things the past few years dealing with Rett Syndrome. First, every time I write Rett, it gets auto corrected to Rest, which is hilarious. I wish she had Rest Syndrome A syndrome where everyone is Continue Reading
Holidays can be stressful. All holidays. Right now, Maggie is so exhausted from her new seizure medications, on a day to day basis, we never know what to expect. There are plenty of days, we find ourselves tied to the Continue Reading
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
We are on our way to CHLA today for a 48 hour video EEG. Yep, that is where we are. We are now dealing with seizures. This has been happening for the past couple of months. We haven’t really discussed Continue Reading
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
