Jessica was born in July 2009, and has Rett Syndrome. She lives with her parents and younger sister in London, UK. This blog is intended to keep family and friends updated on Jessica’s progress, to document how having a child with a profound disability affects our family life, and to keep me sane! If you are reading this, and something strikes a chord with you, or you just want to say hello, please comment so I know I am not talking to myself!
Jessica has a new bed. It has become a bit of a tourist
attraction in our house; anyone who comes round has to go and see it (the downside
of this is that I now need to tidy the whole house for visitors, not just the
living room!) It is an amazing piece of equipment.
Up to now, she has been sleeping in a normal cot-bed with
the cot sides still on. But she was getting too big for it, and too heavy for
us to be able to lift her in and out safely.
However, it was not obvious what was needed to replace it.
We needed something that made lifting her in and out easier, but a single bed
with standard cot sides wouldn’t be safe for Jessica. This is because she will
often go into a high kneeling position and also has no sense of danger, meaning
she would topple over the top.The new
bed goes up and down at the push of a button, it has (very)high cot sides that
Jessica can’t fall over the top of, which are also padded but with a couple of
windows for her to see out off. The doors also fold back to expose the whole
side so we can get her in and out easily. In essence, it is exactly what we
Sleeping arrangements when we go away have also posed a bit
of a challenge. As already explained, a single bed is not safe for Jessica, yet
she is too big for a cot and a mattress on the floor would just mean she would
spend the entire night crawling around the bedroom! Anyone who knows my husband and I will know
that we are couple who have the travelling bug. We are obviously limited at
present as to what and where we can go, just by essence of having two small
children. BUT we are not going to let Rett Sndrome limit us even more, so a
solution had to be found, and this special needs bed has met all our needs.
So, sleeping arrangements all sorted. We just need to work
out how to make her sleep now!
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