Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Monday, June 7, 2010

Home at last

Wes and I are finally home, after 9 days away from Abby and Logan. After the conference in Colorado Springs, we spent a few days with my brother Patrick, and my sister-law, Teresa, in Estes Park. We had an awesome time, but we're so glad to be home with the kids!

Abby had a great time with my parents. She has them (and everyone else) wrapped around her finger. We are so blessed to have so many people who love our kids and wanted to spend time with them while we were gone. It's a great feeling knowing that they are so well cared for in our absence.

I was hoping Abby would be walking normally when we returned. She has been having some unusual walking spells for the past couple weeks. Abby has lots of unusual spells that often disappear as suddenly as they start. I was hoping this was one of those kind of spells, but now I'm not so sure,

Typically, Abby can walk independently on an even surface. She loses her balance sometimes, but she doesn't fall often. Lately, however, she has been abruptly collapsing a few times every day. Her knees seem to buckle, her head drops, and her arms fall. It looks like she is having atonic (drop) seizures. Obviously, she needs someone to hold her hand at all times, as these drops are completely without warning. Even when she does walk, her balance is very poor and awkward. If she is having seizures, that would explain her tiredness/weakness and loss of balance. I have called the neuro and I'm waiting for a call back. From what I can tell, the medicine she's on for tonic seizures does not stop drop seizures, so it may mean she needs to add a different medicine. Ugh! I hate Rett Syndrome something fierce!

Despite the (most) recent issue, Abby has been in a great mood. She has been laughing all day and is super cuddly. She was even happy to work on her belly and the therapy ball. Go Abby!


  1. drop seizures. interesting. leah does this every once in awhile. probably once every week or so..and i can never figure it out! you've now convinced me to call our neuro. ugh.

  2. Oh no. I hope that's not what is going on with Leah. There are so many different Rett spells, it's hard to tell what is what. Let me know what you find out.