I know it has been a while since I have posted but, thought you would like to know how Hope is doing.
On March 1st she had 21 episodes, the longest episode lasting 27 minutes and the shortest lasting 11 minutes. Since then most of her days have been like this. The days that aren't so bad still consist of at least 9 episodes in a day. It has been hard on her and takes so much out of her. Most of her days are spent sleeping more often than not. We do not take her anywhere anymore because traveling causes her to have these episodes, so she sits at home with us. When I have to work I have a family friend come in and check on her frequently through out the day. It is very hard to watch her go through this but, the only thing we can do is try to calm her down and let them pass because there is nothing else we can do for her. I know she was nominated Special Friend status and is now on the BEHAF website. So if you want to read more about when this all started, you can go to the BEHAF website and find her under Special Friends. Hope just turned 3 on March 10th. Her birthday was a very quiet one (not at all like I had hoped for it to be). I had so many special things planned for her this year but none of them was put into play because of her condition. Hopefully next year will be a better one and she can enjoy everything I plan for her. I don't have a chance to be on the computer much anymore but would like to thank those who have sent encouraging emails to Hope and I. Give your babies big hugs from us. Kelly Weir and Hope http://home.twmi.rr.com/skylinebmd/index.html/hopeindex.htm
