Although the "effects" of the disease are more visible than ever (more blisters on her face, her stooped walk, her mitten hands and wrist contractures), I feel that we have finally have stayed one step ahead of this wretched Monster called EB.
So what is different? For 2 years, I took pictures of back/shoulder/and leg wounds that would not heal. Due to the nature of the pictures I could not show them to anybody, except for Todd and some of Kourtney's doctors. I am not talking about small scrapes, infact to measure the size of them we would refer to the ones especially on her back as continents on a map. (Africa and SouthAmerica) It was devastating to Todd and myself when the continental drift would take place, in other words the skin would heal, reblister and then just become one big wound. I spent hours looking at the pictures, to see if there were any signs of healing and attempted to come up with the right dressing to heal the wounds. One day Todd finally had to tell me to stop taking pictures because it was depressing for us to see her skin in this shape and he said it.....it's not getting any better.
During the 2 years of being a photographer, not one doctor ever offered me any hope that these chronic wounds would heal nor did any doctor ever suggest something that would work. I would lay in bed at night consumed with the fact that this monster had robbed my Kourtney of any kind of normal teenage existence. The pain was so excruciating, dressing changes were miserable, morning meltdowns were an everyday occurrence. I tried so hard to accept that this was the way it was going to be. A lot of people wondered how I could work fulltime. Hindsight is always 20/20 but I believe I needed to work full-time to provide an emotional balance for me.My mother's heart broke watching my daughter in such a state, it was very difficult to watch.
Then last "fall" happened. November 1st was the day we took Kourtney into Children's. We were not given a lot of hope that Kourtney was going to survive, and if she did her quality of life would be greatly affected. The doctors at Children's sent us home with our tails between our legs with no followup care. We were bludgenoned by the news, and after a week of having Kourtney at home, we could no longer keep her "comfortable". Her pain was so out of control, she was too weak to even sit up in her wheelchair and she was loosing weight. I phoned Dr C. at Children's, his response, "take her to Abbotsford" as there was "no room at in the INN" at Children's hospital. This was clearly God's hand leading us there. The doctors at Abbotsford hospital collaborated as a team to improve Kourtney's quality of life. They told us that Kourtney's recovery would be long and arduous. But the fact they were even talking about "recovery" was the best news we had yet. Even after we were sent home from the hospital we were still not sure if Kourtney would fully recover......
Now we are almost at the 1 year milestone. I haven't had to take any pictures of her skin because the chronic wounds, although scarred, are completely healed. Kourtney has gained 20 pounds, her dressing changes although still extensive are not painful like they used to be and she has not needed a blood transfusion or iron infusion in 11 months (she was getting these every 2 months for 4 years prior!!) She is able to go out more and socilaizes a lot more then she ever has. She just turned 16 and will be able to drive with an adapted vehicle. This gives us a lot of hope for independance down the the road as she steps into adulthood. Once again the fact that we can even think about her driving is miraculous.
Starting this week Kourtney will be going weekly into Children's Hospital for serial casting of her right foot. Kourtney is having a very difficult time walking as her right foot is contractured. The Hope is that the serial casting will be able to straighten her foot out, increasing her mobility and transferring skills.
And just a little about me.....I have recently taken a part-time position at work. I feel I have been "checked" out for awhile, and I need to be home more with my family. Shaelyn is at such a transitional age and I want to be there for her (12 going on 17). I want to be around to break up the sibling rivalries, attempt to be the voice of reason in a teenage world where life does not make sense, I want to be around to hear about friendship issues and their days at at school. I still have been working out at the gym, and have taken back my responsibilities in the kitchen (Todd was doing a lot of the cooking). I feel I can maintain a better balance now that the monster seems to be under control. Life is good right now! I feel I can finally breathe!
