Friday, 24 April 2015

stuck in the throat

Today is Undiagnosed Children's Day. Every year, six thousand children are born in the UK with conditions that are undiagnosed. Nenna is one of them.

Yesterday, the Speech and Language Therapist phoned to say that she had observed Nenna eating at school and that she thought the time had come to say that it wasn't really safe for her to eat orally any more. If we want to keep giving her things, smooth and thick textures and quaver-type crisps that melt in her mouth will be best. But she's not swallowing well and her cough-reflex is not reliable, so the likelihood of her aspirating is increasing.

This is an unreasonably huge milestone for us, a really big signpost that says 'yes, your daughter is deterioring'. Or, 'progressing' as the professionals call it.

Obviously, because she is undiagnosed, we have no idea how long this stage will last, whether it will stabilise, whether she will continue to deteriorate so that she can no longer deal with her own secretions and we will have to start suctioning her.

Thankfully she has her button and the blended diet we are feeding her is working well. Nutritionally this will make no difference to her. Socially however, it is huge, for all of us.

For today, that is all. I really can't write any more.

1 comment:

  1. My mother had a friend with MND who was the same, but at the other end of the decades as she was in her seventies. Eating, or even only drinking, is a connection with a normal life that I guess you only truly appreciate when it's being taken away. You know how your friends feel but can't express. The helplessness is the worst, I guess.