Friday, January 26, 2007

One Year Ago....

caitlyn...just one month before we first heard the words "rett syndrome"
Tomorrow is 1 year for us...I wish I could tell you that on the eve of this day, I'm ready to head in to the day head first and full of excitement. More likely is that I am ready to curl up in bed and skip the day all together...the day that our lives changed forever. I wish I could say that I have come to grips with everything that Rett Syndrome has brought into our lives. The fact is, it is a work in process. We will continue to go one day at a time to make it through everything. There has been hard times and there has been happy, easy times.

The words "Rett Syndrome" lifted a burden for us. It closed a chapter of the unknown. At the same time, it opened a new chapter in our lives. Another chapter of the unknown. A year ago while we sat in the office of our Neurologist and had the attending (our resident was much nicer about it all) basically tell us that Caitlyn would be mentally 2 1/2 forever, we lost a sense of hope. We grieved for the loss of dreams. Althought we still deal with some grief, as well as some anger...Today we have a new sense of hope. Caitlyn is learning to communicate with us in very clever ways...She enjoys doing what mommy and daddy tell her not to, and is even able to communicate her needs to use the potty!

A year ago as our hope was stripped from us, I spent many hours crying...Today, I still cry...I still struggle with the loss of hope..but at the same time, we have a new found sense of hope. We have learned so much about ourselves and Caitlyn in this past year. We have learned how differently everyone deals with the changes that life has given us. We are forever thankful to all of the support that we have recieved. We hope that everyone that comes on line, and reads about Caitlyn will be struck by her...Her smile is not something that you can see, and then just simply forget about.

One year down...and hopefully many, many, many more to go...Here's to learning about unconditional acceptance from a child!

Thursday, January 11, 2007

Let it Snow, Let it Snow, Let it Snow!!!!

We had some beautiful snow hit us this week. Caitlyn was thrilled. She fussed when I was bundling her up, but once we got out it in, she really enjoyed it...I just thought I'd share this scrap book page of her hanging out in the snow!

Nuero Update

Well, Caitlyn went in for a checkup with the nuerologist. It was mostly un-eventful. We have had some increasing activity, and have raised her Zonegran to see if it improves. We are pretty sure that the increase in activity is due to weight gain, which we are happy to see! Caitlyn is weighing in at 32.5 lbs now! This brings her BMI up to 25%, taking her out of the danger zone! We are very happy to see a healthy weight gain.

Potty training is pretty on and off. Currently we are off...Well, not completely off. She is still going, just not as much as she was..We have some hurdles we needs to overcome with accomidations for potty training before we can be completely successful! Well, that is our update for now!

Wednesday, January 03, 2007

What technology does for us..

Amazing technology has entered our home once again. Here is a video of Caitlyn letting me know she needs to go potty, using her new one-choice communicator that hangs on our wall. It is hit or miss that she actually needs to go when she pushes it. We think she sometimes pushes it while she is going, too. She is growing up soooo fast!!! I just can't believe it! She is doing great with the pottying! We are using pull ups. She even pottied at school this morning! Apparently they have every imaginable potty seat or chair at the school, and used what she uses at home! Well, here is the short video