Rebecca's Mom

Hi Lisa - yup I'm here - have answered a few posts here and there and am always reading what I can. Seems you are making progress. Don't get discouraged if you have to take a few steps back once in a while ok? Its obvious you appreciate every gain - you go girl. I am very proud of you. Jake is who he is and not to be compared to anyone else. You seem realistic in your approach and that will get you very far in this journey. Rebecca is doing better - whew - that was quite scary a few months ago. She has now gained 5 lbs and is up to 85 lbs. She is presently doing well during the day - although having lots of complex partials (we call her name or nudge her and she usually comes out of it). Nights are usually difficult with tonic clonics that go on for 20 minutes and then the rest of the night is without sleep. Rebecca
used to sleep a long time after them but not anymore. I have a bed in her room and now sleep with her. Our government provides us with support and we currently receive 2 nights of nursing - lucky us. Nurse comes tonight and we are looking forward to it. I also have spent many years advocating for a respite home for medically fragile children. It just opened this year and is staffed by nurses and developmental support. It is a regular looking home which I feel is the only appropriate place for our children to be. Families get 2 weekends every 3 months - can ask for day stays or crisis stays as well. It was a long and hard process, but I was very passionate in our regions needing it. In fact it serves 220 families with 6-8 kids at a time. So, I put my energy into that and it made me feel that I could help with some change in this world. There was one in another community 1 1/2 hours away and Rebecca went for the first time when she was 13. Lisa - that was too late. I advocate for parents to start taking there children when they are very young so everyone gets used to it. A big plus is Mom and Dad can regroup and spend time alone or with other children. Rebecca is now only on Epival - meds really do nothing so this is only to keep a base in her. Our government also provides us with service workers which can be difficult to find, so I hired some friends who already loved Rebecca. It worked out well for everyone and they know they are making a huge difference in her life. She has learned so much from them. Again, the system has to be flexible to accomodate our changing needs as these kids grow up - so we shall see what the future brings - Rebecca just turned 18 - we love her from so deep within, but we have to make future plans. Working on that. Lisa, sounds like you do lots of caregiving - make sure to caregive yourself. I do some yoga and just took up watercolor painting. When I'm really stressed, I paint - soooooo sometimes I paint alot. Here is to you and yours Lisa..........loving life and all it has to offer...........Paula

__________________
Paula