Retrain the Brain . . .

This week the dressing changes have been a very traumatic experience for our whole family. Last Thursday, Kourtney screamed the house down. I handed over the reigns to Todd. Both of us were so upset by her behaviour that we needed a debriefing session with Todd' parents. I phoned up the psychologist, very distraught about the whole situation. She feels that during their sessions that Kourtney is making progress with owning her disease and making her own decisions about her care. Progress was not a word that I would have used to describe the behaviour that we were witnessing at home. So once again I had to take a step back and hand over the baths to Todd.

The most amazing part though is Kourtney's skin is looking the best it has now in over 7 months. Our caregivers have noticed the progress immensely. If anyone else were to look at her skin they would probably not be able to see the progress. Kourtney's skin is slowly returning to her normal blistered skin. What was happening over the last 7 months was Kourtney's skin would blister and erode due to the skin being more "friable" from the infection. Now her skin is blistering, but not "eroding" at the fast pace that is was before. The erosions were deep and painful, but now they are very superficial and itchy . . . So we have to be very vigilant with keeping the itchy areas moist with cortisone creams and moist dressings.

We have learned that the body's response to pain is triggered by nerve pathways to the brain. We also know that a pain response can also be triggered by bad experiences. For example, some people have a fear of dentists and doctors. In Kourtney's case, this last seven months, the dressing changes have been so traumatic that the pain, fear and anxiety are triggered by memory. She thinks, "It is going to hurt so I am scared to get in the bathtub." Now that there is so much improvement in her skin . . . her brain has to be retrained to tell her that the baths will not hurt as much now. This will not happen overnight as there is still much skepticism for all of us that we are at the end of a long dark tunnel. It will take a lot of time, energy and patience to get Kourtney over her anticipatory pain. She is indeed making a lot more decisions about her care, but still has not come even close to convincing us that she only needs a bath once a week.

We really want her to feel good for our trip in May to Florida so that she can enjoy the rides at Disney World and not feel the pain she has felt over the last little while. We have a month before we leave . . . so far the improvement over the last 3 weeks has been very encouraging.
We are looking forward to Easter and spending time with Todd's family and also my cousin Leanne and her family. This is the first Easter in the last couple of years that our house is not under construction. It will be a wonderful Easter!!