Monday, 13 January 2014


When Jess starts school...... Life will be a bit easier

When we have a suitable wheelchair...... Life will be a bit easier

When we get some respite care...... Life will be a bit easier

When we get a more suitable car...... Life will be a bit easier

When we have less appointments (ha!) ...... Life will be a bit easier

When Jess has the Gastrostomy...... Life will be a bit easier

When Jess has a chair upstairs...... Life will be a bit easier

When the house has been adapted...... Life will be a bit easier

When Jess's little sister is a bit older...... Life will be a bit easier

When Jess's little sister is sleeping through the night...... Life will be a bit easier

When we get Jess's medical issues sorted, she might sleep and...... Life will be a bit easier




The "when"s never stop. We never seem to reach that mysterious place where life is a little easier.

Immediately one issue is sorted, another crops up. I wonder if Rett Syndrome ever lets you get to a place where life just plods along. Or does it always continue to throw curveballs at you to juggle?

I don't know. But I have decided I need to adopt a new motto. I asked for this for Christmas, and plan to put it in a prominent place, to keep reminding me of it's message:

Quote by Vivian Green

Sunday, 12 January 2014

Monday, 6 January 2014

Another First (and not a good one).

Well, we moved into the New Year continuing our regular trips to hospital, although this time Jessica did it in a more dramatic style.

We were going into Jessica's room VERY frequently through the night, as normal - repositioning her, replacing the oxygen mask, comforting her after her weird shaking episodes etc, when I suddenly realised that something was wrong. Very wrong.

Jessica's breathing pattern had completely changed, her oxygen levels were very low, she felt both hot and cold at the same time (if that's possible) and when I tried to wake her up, I couldn't.

We dialled 999 and requested an ambulance - within minutes 3 very professional and highly trained ambulance crew were in Jessica's bedroom with us. I started rambling on about large tonsils and ENT appointments when the paramedic interrupted me and in a very delicate (let's try not to panic the parents) kind of way, basically said "she's very sick, we need to go to hospital NOW".

So Jessica and I went in the ambulance (with blue lights) to our local hospital The ambulance crew radioed ahead, and on our arrival Jessica was rushed into the resuscitation bay, where there were 10-15 medical staff (A&E staff, paediatricians, anaesthetists) waiting for us.

The staff were brilliant and Jessica was assessed and stabilised. Her temperature was 39.9 degrees which is way too high. Her oxygen levels and breathing sorted themselves out with minimal input required from the anaesthetist. With treatment her temperature gradually reduced and she became more and more alert over the next few hours. When she was stable, they transferred her to the High Dependency bed in the paediatric A&E, and then up to the children's ward.

A few hours later, Jessica was sitting up in bed, giggling at CBeebies, with my husband and I looking at her, asking what the hell just happened?

They think Jessica may have had a seizure, either because she does have seizures as part of Rett Syndrome, or because of the high temperature, which would explain her reduced consciousness level. However, it is not clear why she had such a high temperature - the only sign of any infection is a (very slightly) runny nose.

We are now home, although Jessica is having intravenous antibiotics just in case, and she seems fine in herself.

At the time, it was all a bit of a blur, and writing it all down here makes it all sound very dramatic. I think it is only now sinking in - just how serious the situation was/could have been. I feel we had a lucky escape from how that scenario could have turned out. I never want to have to call an ambulance for a child of mine again.

Incidentally, the ambulance crew were only slightly distracted but quite amused at Jessica's little sister prancing around in her pyjamas with a stethoscope around her neck, while all the drama was going on.
This photo was taken on a different occasion (I didn't start snapping away while Jessica was ill!)

Sunday, 5 January 2014