I thought it might be a good idea to make a regular record of life in our household as we are a fairly typical family with ALD. Hopefully it will give people an idea of what our life is like and help to highlight the difficulties of living with this illness.
To start I’ll give a “brief” summary of life to date!
I have two boys with ALD, Alex and Ayden. Alex was seven when diagnosed back in 2001 and quickly deteriorated to complete dependency. He is still with us today for which we are eternally grateful. Ayden was one when diagnosed shortly after Alex and had a bone marrow transplant in May 2008 as the beginnings of ALD deterioration had been spotted in a routine MRI scan. Although he had many complications during the transplant and took a long time to recover he is now back at school full time and we’ll get the all clear with him in May this year.
During the past nine years of living with ALD we’ve had many, many ups and downs. Both boys have had an incredibly tough time and we’re really looking forward to an incident free 2010. After Ayden’s bone marrow transplant we then had to endure Alex having spinal surgery to correct chronic spinal curvature which was preventing him from sitting in his wheelchair. He had his operation in September 2009 and just when we thought we’d got back to normal he developed a pressure sore which we are desperately trying to heal with all possible concoctions so he can have more than an hour out of bed at a time. Considering he’s been bed bound for near enough the past 18 months, it’s frustrating to say the least.
Today’s goals are to chase getting Alex’s bedroom hoist fixed as it keeps stopping and starting and makes horrendous noises when going along the track! Take Alex to a hospital appointment for an expert opinion for a personal injury claim dating back five years when he returned from school with a broken leg. Chase occupational therapy for a reassessment as our house is shrinking around us as the boys grow and Alex’s equipment badly needs updating. Have a review by the continence nurse as the new “better” (and I’m sure much cheaper) pads they have given Alex leak and cause him to sweat which is not good for his pressure sore and probably adds to the risk. Take Ayden to a play therapy session to help him deal with his feelings about his life and ALD. Oh yes, and to have my hair cut!