Tuesday, February 15, 2011


Hey all,

It has been crazy around here lately. Mostly my fault. I'm sure things could run much more smoothly if I wasn't such a nutcase.

We started Abby on the meds and I hate it. I hate that she had a few seizures, hate that I was forced to medicate her and hate the state she is in. Rett Syndrome wins again!

In my paranoia I was just sure that as soon as i put the first dose of seizure med in here she would be catatonic. Didn't happen but she is different. I am praying she adjusts.

She has been moved into my room and we are working on turning her room into an office/dressing room...I don't know who we is..damn voices in my head.

Abby's little system is handling the change poorly. She seems to be starving. Keeps telling me she is hungry through pictures and when I feed her she gags and vomits. She hasn't had a bm without help in a week. She is clingy, spaced out and wobbly.

The exhausten hit me today like a ton of bricks. After she went to school I put a load of laundry in and was going to just rest my head on the couch for a minute. I woke up 6 hours later and still feel like I could sleep for days.

I have been trying to get video or pics of her to post for you so you can see that she is OK but she is not having it. Hopefully soon.

We have been without a caregiver to help for ...I fired her sometime last week but I was lucky if she was showing up 2 days a week for the previous month. My house is a war zone, someone borrowed my carpet steamer and I cant remember who and I have stacks and piles everywhere and all I want to do is just sleep..not sure if it's the being exhausted or depression

Thank for checking in. We're trying...and she's ok



Kristy said...

Sending you all the positive vibes in the world!

Anonymous said...

this might not mean much since im a fourteen year old girl but my little cousin has rett and ever since we entered rett world i realize just how strong some people are. i think that rett girls and rett moms and dads are some of the strongest people ever. you are one of the few that inspire me. stay strong