When it was diagnosed in the early days, though I had explained a bit 'what was involved in the dysfunction and the few that I was able to find information on my own time there was no internet and university textbooks of medicine there was only one small paragraph, I could do well to realize that what had happened and what he meant to our lives.
During the first admission at the center more 'specialized, perhaps the only one who was in Italy at the time, informed us in detail, let us also understand that the only possibility 'of survival were the constant care and physiotherapy. A young nurse, with the braid, Heidi appeared, including disruption which would be for a mother, he helped 'to make me courage, explaining that these children are of average intelligence, trying to prove what I had been lucky to have a child with this problem instead of 'other types of problem.
Li 'for them' understand only its sweetness, and certainly not what I was saying!
I must say that over the years I got to see that in fact these children there is 'a plus', Prisca is that all the other kids and teens I met attending the center. In this
time I started going to a psychologist in Bologna, Dr. Bona, who is also the regressive hypnosis, and he told me that they had treated over the years, five children with CF and told me that boys were all out of town and he was' convinced that the Earth is a planet not suitable to them for what they can not breathe the air of the Earth: I agree, but that the planet could emigrate? We are looking for suggestions .....
and mothers. Women who came from all provinces of Italy, stimulated by this event that happened in their lives, have pulled some muscles inner normalmete would stay there ', inactive, atrophied. Having always hope that something can be done to prolong the lives of these wonderful children, brings out all the will to fight, to go all. Even the pope ', but generally leave the field to mothers, and on the other hand' in the tradition, 'cause you start the treatment since they are small and in general, babies if they are primarily mothers. However, in the center also tried to cultivate the psychological approach to the disease and the involvement of the entire family, including grandparents, if possible, to give relief to the mothers and not make her feel overloaded with commitment as well as responsibility 'or for all cases that can happen in life.
They taught us the importance of movement and outdoor life, Normally when a sick child is kept in the house for days to heal before it, we said to cover well and leave with all temperatures, including snow and ice. Instructions for use .....
I must say that at first everything 'was reassuring gave a little' the illusion of control the matter. And I liked to think that. There was a human
charge in this department really beautiful and important for kids who were there 'for patients and their parents. We worked with physiotherapy, with the assistance and advice bravissime physiotherapists, visits and tests were made, but then he went out in the garden, was an old nineteenth-century Hospitaller Institute, containing several fields and large trees, public gardens .... games like Prisca when she was little control or go to the hospital was a little 'holiday, after the critical time of injection or withdrawal .... then you were with other children play and mothers sometimes stopped to chat .... if no internet so we were exchanging 'information and experience ... to have finished the conversation full of anguish for listening experience more' difficult of our and other sometimes full of hope for most kids have heard of 'great that they were well and had an almost normal life ...
The years passed and controls admissions and intensified, and every time we got up at 6am to go to a control, We are already preparing 'a little' anxious, sometimes even anxiety already started 'from the day before .... as will become' spirometry, and exams will be highlighted problems such that needs a home infusion care or hospitalization?? Usually we knew already understand 'for themselves whether there were worse, sometimes we did not want to know ... Then the trip, 1.30h street, at times, especially in recent years, having been coughing and spitting phlegm, after aerosol had made before leaving home. That
cough, with that breath is never enough ... sometimes, even when going to feel the struggle to keep up my breath, I was not breathing too ....
In the years when he was better, and especially when we went to check a bit 'more' quiet, traveled with the music at full volume and sing out loud, Bloody Sunday Sunday .... .... or what we went through the head, depending on the historical moment that we were going through: the music and 'has always been a wonderful company, has always helped us to overcome difficult times and to enjoy more of the most' beautiful ...
sang was a good outlet for both, not to listen to the boredom that trip that we did not really want to do then, but we had to do ....
Prisca The last months of life were spent in hospitalization, the uncontrollable infection did not allow us to do the usual care at home, but they also 'the music never failed: a little' Radio DJ's company, and especially moments Mozarth Ben Harper, Diamonds on the inside .... when one of the nurses had to do transactions that created tension in Prisca asked to turn on this disc: she realized that she was more 'relaxed with the 'listening to Ben!
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