This weekend my wife Marie was away to meet other mothers who have heart related diseases. The weekend that was arranged by The Swedish Heart-Children's Association and Marie was a positive but tired when she returned. At home, grandma came and stayed with us while Marie was gone and we have had some nice days with great weather. Yesterday Elliot told us he had so much run in his legs and to hear him say something like that makes me feel very happy. I and Marie talks a lot about to live here and now and not to focus on what might happen with Elliot. Sometimes this is impossible but we try to do our best.
Today has been a good day.
Hi Patrick;
ReplyDeleteI'm here reading your last posting and feel very happy too for Elliot's comment about the run in his legs, that is a great sign of energy there. My little Daniel has been very active latetly too and I want to think is the Revatio (Sildenafil) already starting to work. Maybe the recent increase of the Bosentan also showing some good effect. I understand you when you talk about living and enjoying the present but we are parents and humans and can't stop our minds from worrying about the future because we love them and want them always happy and healthy. I'm trying my best to stay postive too and know this will make good things happen. Hope everything keeps going good with Elliot and we'll keep in touch each other with good updates. Regards, Fanny
Hi Patrik,
ReplyDeleteI left a message for you on the Message Board at PH Association. My son Ryan, 12, was diagnosed with PH last week, secondary to his congenital heart defect. He hadn't been cathed in 9 years, so we don't know how long he's been suffering from the disease. I'm hoping it was caught in time for the meds to work, he's starting Tracleer and Revatio, he's been on Digoxin since birth from the ToF/PA. He will have another cath in 6 mos. to see about his pressures. I will continuely check back for updates on the progress Elliot is making and I wish you all well. I hope to see you on the PH messageboards or in one of the chat rooms, they are EXTREMELY helpful and informative.