It was while there that we realized that Emily could no longer sit on the floor unaided. She was ok in a chair, and still ate and drank, but just needed a little support.
When we got home, we saw the consultant again and expressed our concerns. Then the roller coaster really began. We spent two months watching her deteriorate bit by bit until she could only sit when propped up. Her arm control started to go, she would try to get something into her mouth and miss. she could no longer hold a normal cup, but managed with one with handles for a while until I had to take over and hold it for her. While this went on we were back and forth to hospitals, trying to get someone to look at her. We even presented her at A & E and said she has head injuries just to try to get them to look at her. The registrar we saw was the first person to indicate that if she was falling back from milestones that she had already reached, then it "usually" wasn't good news.
He still refused to treat her and told us
"sometimes children die" - well, you can imagine how I felt
at that.
Eventually Emily had the MRI scan, saw a neurologist on the 23rd of September
2003. The neurologist diagnosed a type of Leukodystrophy and he took blood
to determine the type. We went home under instruction not to try to look
it up until the results were in. Naturally, as soon as we got through
the door, we went to look it up.
Emily had her NG tube fitted two days later. By the time the blood tests
were back she was in hospital and the doctor had told us he didn't expect
her to last the night. We had her christened in hospital, and everyone
we knew came to visit.
