Friday, 12 July 2013

When things don't go to plan.......

Clearly Rett Syndrome has a massive impact on both Jessica and our family life. However, we try as hard as we can to make sure Jessica experiences as much of a “typical” childhood as she can, and experiences as many things as possible now, while she is still small enough to be lifted or carried.
 
With this in mind, we booked to take Jessica to Peppa Pig World in Hampshire for her birthday. Many of her presents were Peppa Pig themed, as was her birthday cake that we all made together:
 
 
We planned to stay in a hotel nearby on the Friday and Saturday night and booked to go to the park on the Saturday and Sunday – the park offers good deals on bookings like this! They also offer a really good queue assist programme for disabled children or others with special needs, and I had heard good things about the park from other families with disabled children. Given how much Jessica loves anything out of her normal routine, and that both girls seem to love going on rides etc, we thought this was guaranteed to be a success. However, we hadn’t allowed for Rett Syndrome to cause us more problems than even normal.
 
I posted here about the difficulties Jessica has with sleeping. And despite starting on anti-reflux medication (I will do a post about this another time) her sleeping pattern is still really erratic.
 
Anyway, the weekend before we were due to go to Peppa Pig World, Jessica just stopped sleeping. Well, to be more accurate she stopped being able to sleep. Every time she closed her eyes, she might have managed a few minutes, maybe up to half an hour on occasions, before she would wake up having strange shaking/jerky/screaming episodes. This was despite being given melatonin before she went to bed.
 
We decided to continue with the plan to go, given that it was all booked, and hoped that Jessica’s sleep would settle down, especially as all four us were in the same hotel room. However, this was not the case. We had a terrible journey down – what should have been a 2 hour drive turned into a 5 and a half hour marathon which was not fun with a 1 year old and an overtired Jessica.  Jessica would try to sleep in the car (which just goes to show how exhausted she was, as she never sleeps in the car) but would keep waking with the same strange episodes.
 
Our first night in the hotel was ok – Jessica slept the best she had all week, and so off to Peppa Pig World we went on the Saturday morning. The park itself was great, and lived up to its good reputation. However, it was the hottest day of the year so far and there is NO shade in Peppa Pig World. Both girls went on a variety of rides – Anna enjoyed herself and, bless Jessica, she did try really hard to have a good time. But she was just too tired. We spent the whole day on the Saturday there, and then went back to the hotel. We then had a terrible night, and on the Sunday morning we were all exhausted. Given that the Sunday was supposed to be even hotter than the day before, and how tired we all were, we  decided not to return to Peppa Pig World, but to cut our losses and drive straight home, hopefully missing all the traffic. We got home in good time and all crashed in front of the television to watch Andy Murray win the Wimbledon final (Jessica loves watching tennis!.) Jessica loved everyone cheering and clapping, and Anna would cheer and clap as well, although I don’t think she had a clue what it was all about!
 
It was such a shame the weekend didn’t work out - maybe we will try it another time, as under normal circumstances, I think Jessica would love it.
 
We have an appointment with Jessica’s consultant this week, and then another at Great Ormond Street Hospital next week, so I hope we will soon have a better idea of what is going on. What I do know is that neither Jessica, or us, can go on like this.

 

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