Is it Neurofibromatosis? Appointment next week

Master A has his appointment next week to see whether he has something wrong with him. I have posted about it here.

I am scared. Sometimes I feel as if I can’t cope. I have cried a lot. I don’t want him to have it. I know it could be worse. But I wish that nothing is wrong with him. That may be selfish, but I think it is a normal feeling, isn’t it? I have read that 95% of children with cafe au lait marks are likely to have neurofibromatosis. I hope that he is in the 5% but that is a scary statistic. It is from a credible source.

I have had two months to deal with the fact that my son could have neurofibromatosis but I can’t seem to deal with it very well. I don’t think the children know how I feel. My other half does. You do now. But I can’t seem to talk about it. I just have to wait until Tuesday next week to talk about my concerns and to see if the paediatrician thinks that Master A does have NF1 or perhaps something else.

Master A still isn’t talking well at all. He also has a few ‘quirks’. He still puts his hands over his ears when something new happens. He doesn’t like walking much these days. He keeps on wanting to be picked up. So I am still having to rely on the pushchair as I can’t carry him for long, he is too much for my dodgy back.

This is one of the reasons why I haven’t been blogging for ages. I have also broke my toe. Pain relief has been making me so tired, although I think it is the stress of it all to be honest.

Roll on Tuesday. I think I will deal with it a lot easier if we either had a diagnosis or better still everything is OK.

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