OMG (Oh My God)...Paula...I already feel as though we are joined at the hip!
Let me respond to your questions and then ask a few as I am short on time tonight....
First let me tell you that Beth lost 150 lb. in three months on Felbatol in just 3 months back in 1994 but she did eventually level out on her weight...and is she ever beautiful at around 130 lb.---It was actually the first time since she was a very young girl that we had seen her look like the thin girl she was underneath the side effects and quite a surprise actually. When I look back on the pictures of her before losing the weight (I will share those with you one day) she looked almost bloated as she was so heavy from having been on Depakote all those years. We still have a heck of a time getting her to eat...something I guess you face each day also. There are days we are still afraid she will starve herself to death. We bribe her with a night out in her motorhome or painting her nails purple, or whatever works for the day. She eats mostly french fries and only a little cheese and fruit...no milk or interest in meat. She sometimes will eat bacon, hot dogs, pizza or dried beef in packages though. Sometimes Ice Cream. That is about the extent of her apptetite. Our neurologist and nutritionist have both said the ketogenic diet will not work with Beth because we would not be able to make her understand how important it is to stay with the diet and eat only what they tell you.
Quality of life hits the nail on the head...that is what we are after also. We dance and sing silly songs and in general live a rather bohemian lifestyle to keep things light and fun.
I would not say that Beth is irritable, but she is feisty...uncooperative at times and strong willed...mostly when she wants something, is tired, or senses seizures are coming.
The unpredictability of Beth's seizures is also a problem we face.
And, yes I am so tired at night I literally pass out in bed!
My questions to you...
1. What kind of job do you have?
2. Any other children?
3. Have you always lived in Canada and in which part of that beautiful country are you located?
4. What do you think will be the future for Rebecca....what will happen to her when both of you are gone?
Sorry, really tired tonight. Will try and keep in touch until I have more time to talk and maybe we could send email with photos later...I am an art teacher and visuals are great!
Again so glad to have met you and hope we can develop a supportive friendship in the future for the sake of our daughters and our own "quality of life".
Hi - Purple is Rebecca's favourite colour. She has a sign on her bedroom door "I love Purple". For years she loved having her nails painted, but not anymore. We live in southern Ontario. We have another daughter who is 11 and is a great caregiver and friend to Rebecca. She has done it all. I work in retail 2 days a well, and have spent the last 4 years advocating for medically fragile children in getting a respite home located in our region. It is finally here in a temporary site and our final house completion will be in January. It is staffed with nurses and other support personnel and is in a home like setting which is what we all wanted. I am passionate about saving families with respite care (has to be appropriate though) and that has been my volunteer work on a daily basis. I have learned alot, both politically and as a mom - parents can be a huge voice for a children, although it is exhausting. It has kept me going and given me purpose. I have just finished my term on their board of directors, but also attend meetings as a parent rep. for out ministry to provide input on using government $ for medically fragile children. Interesting stuff. I have met awesome people and it has allowed me to feel I am making a difference. Our long term plan for Rebecca is to find a placement that can be shared with our constant involvement, but this will always be her home. As we get older, the harder we find it. We love life and enjoy many other great times with family and friends. They are all very supportive and accepting of our situation. We especially enjoyed our Canadian Thanksgiving and all we are thankful for - a special time............cheers.......Paula