Hi Cathy, my name is Rebecca Krienselokker, I live in Ontario, Canada. I have three children, Payton 5, Ainsley 3 and Calder 17 months.
Ainsley was diagnosed five months ago with Cystic Fibrosis and I can say life has definately changed for us. Your story sounds quite familiar, doctors murmurs of Asthma, dry skin, weird poos, unusually large appetite, but everybody told me she's fine and quite healthy, no need to worry.
I always suspected that there was something more going on. When she was finally diagnosed, I actually took it better than everybody else. I now knew what was wrong and could finally put on my "game face" and treat the real disease.
Ainsley is a tough girl and from day one has taken her enzymes and ADEK's without a problem. The Chest Physio on the other hand was pure torture for both of us. I had to physically restrain her while dealing with a baby who wanted all my attention. With the help of our church, we purchased the Incourage System (vest) and therapy is so much easier.
I guess the way that our family has dealt with this situation is through our faith. I see the way Ainsley has never backed down from a fight, whether it be from her brothers or her health, and I know God has instilled that nature in her. I also feel that no matter what happens it will be according to his plan. I worry everyday about the future for her, will she stay healthy? Will we end up in the hospital for a tune-up someday? I try to focus on the fact that today she is healthy, and we'll try to maintain that on a day to day basis. Focussing on the future is sometimes too scary.
I pray for the big miracles, like one day there may be a cure or better controls. But I take comfort in the miracle that if she does get really sick, we will all be together again one day.
Ainsley was diagnosed five months ago with Cystic Fibrosis and I can say life has definately changed for us. Your story sounds quite familiar, doctors murmurs of Asthma, dry skin, weird poos, unusually large appetite, but everybody told me she's fine and quite healthy, no need to worry.
I always suspected that there was something more going on. When she was finally diagnosed, I actually took it better than everybody else. I now knew what was wrong and could finally put on my "game face" and treat the real disease.
Ainsley is a tough girl and from day one has taken her enzymes and ADEK's without a problem. The Chest Physio on the other hand was pure torture for both of us. I had to physically restrain her while dealing with a baby who wanted all my attention. With the help of our church, we purchased the Incourage System (vest) and therapy is so much easier.
I guess the way that our family has dealt with this situation is through our faith. I see the way Ainsley has never backed down from a fight, whether it be from her brothers or her health, and I know God has instilled that nature in her. I also feel that no matter what happens it will be according to his plan. I worry everyday about the future for her, will she stay healthy? Will we end up in the hospital for a tune-up someday? I try to focus on the fact that today she is healthy, and we'll try to maintain that on a day to day basis. Focussing on the future is sometimes too scary.
I pray for the big miracles, like one day there may be a cure or better controls. But I take comfort in the miracle that if she does get really sick, we will all be together again one day.