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Ruby broke my heart the other day, when she asked when the doctor would make her better from coeliac disease. I had not realised she had not grasped it was for life. She now has a picture book explaining a bit more about it. I may also have to revisit the story I tell her about the pink cat with the sore tummy who Noddy drives to the doctor.
Also, I noticed that Pearl is confused at the difference between NF1 and coeliac disease as she conflated muscle weakness and eating wheat. I won’t try to clarify it until I find out if the children also have (as the State geneticist suspects) x chromosome linked hypopotassemia. Seeing the geneticist was really interesting, and a bit like therapy in that I got to talk at length about my kids’ many health issues and how it was a bit of a rollercoaster when you never know what will be diagnosed next.
At the same time, I do feel a bit like we are MUTANTS. But without neat abilities like being able to juggle fire or read minds. Perhaps these things will kick in at puberty for the girls.
Also, I noticed that Pearl is confused at the difference between NF1 and coeliac disease as she conflated muscle weakness and eating wheat. I won’t try to clarify it until I find out if the children also have (as the State geneticist suspects) x chromosome linked hypopotassemia. Seeing the geneticist was really interesting, and a bit like therapy in that I got to talk at length about my kids’ many health issues and how it was a bit of a rollercoaster when you never know what will be diagnosed next.
At the same time, I do feel a bit like we are MUTANTS. But without neat abilities like being able to juggle fire or read minds. Perhaps these things will kick in at puberty for the girls.