Tuesday, 30 July 2013


A while  ago, I posted here about having to take Jessica to the Special Needs dentist. While we were there, the dentist noted that Jessica had no enamel left on her teeth. She asked about Jessica’s diet (does she drink a lot of fruit juice or fizzy drinks etc? - Jessica doesn’t drink much of anything but definitely not those kinds of drinks!) There was nothing in her diet that could account for the erosion on her teeth, so the dentist asked about reflux. This was following Jessica’s sleep study, where they also asked if Jessica had reflux, due to her very disturbed sleep pattern (see my previous posts here and here about lack of sleep and possible reflux).

Subsequently, Jessica had a pH study, to assess if she does indeed have reflux. This involved a probe being inserted into her nose, and down into her stomach. This probe was attached to a small box that recorded all the information over a 24 hour period. 
I had worried about Jessica having the probe inserted, and who would look after Jessica’s little sister while I took her to the hospital. What I had completely underestimated was the effort it took to keep the probe in place. Between Jessica “bunny-hopping” around the living room, and me having to chase her carrying the box, and Jessica’s little sister trying to pull the probe out, it was a miracle that it stayed in for the full 24 hours!
But it did stay in, and yes, it turns out that Jessica has extremely severe reflux. Which is good to know, as now she can be treated for it, but devastating to think that all this time she has been in such pain and we didn’t realise. Jessica has now been started on a variety of anti-reflux medication, which appears to have made a bit of difference at night. However, I am sure that reflux doesn’t account for all her sleeping issues – I think there is also a neurological element to them, but I hope that at least she won’t be in pain anymore.

Sunday, 21 July 2013

Too tired to eat and drink

Following my previous post, Jessica barely slept for 10 days. She was exhausted. On day 10, she woke with a temperature of 39 degrees, that Nurofen and Calpol didn’t touch, and she was refusing anything to eat or drink.

We went to the GP, who did all the normal examinations – checked ears, throat, glands, checked for a rash etc but couldn’t find anything wrong. So we went home with the instructions to try to get as much fluid into her as possible. It turned out that this was impossible, and given that this was again one of the hottest days of the year so far, we went back to the doctor, who sent us to the hospital. At the hospital, they again fully examined Jessica and also couldn’t find any cause for her temperature, which disappeared as suddenly as it came on.

Following this, Jessica has pretty much slept on and off (not well, but her usual sleeping pattern) day and night. I don’t know if this is to make up for the lost sleep, or because of the hot weather. She is eating and drinking now, albeit not much, and with some difficulty. I just want my Jessica back and happy.

Postscript: In the time between writing and publishing this post, Jessica seemed to catch up on her sleep, but she still had trouble swallowing (which is something that can happen when she is tired), for a few days. However, thankfully, what ever all that was about seems to be over (for now at least!) and she now is fully back to her normal self!!  

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.


Thursday, 4 July 2013

Jessica needs holidays too....

We have recently returned from an amazing two week holiday in Greece. This was a much needed break for myself and my husband, and we had been very much looking forward to it.  The last year has been difficult and stressful, as I wrote about in my previous post here. I needed a break from rushing around, and all the “organisation” that goes with having a disabled child with complex needs.

We were staying in a villa, in a small resort with a communal pool, an amazing beach, and a kids club. Now, I never thought I would want a holiday with a kids club - to me holidays are for family time.  However, Jessica cannot entertain herself, and needs an adults help to do, well, absolutely everything.  We can’t do what we see other parents doing – sitting by the pool reading their books, while looking up occasionally to say “don’t run” or “share your toys” etc. Any down time for us is on our own, and at the expense of the other parent caring for, or entertaining, Jessica by themselves. Given that we also have a lively one year old whose needs are completely different to Jessica’s, this means that both myself and my husband often end up taking a child each, with neither of us getting any time to relax.  To allow myself and my husband some much needed time together, we felt that we needed to seriously consider the kids club. The staff had British qualifications, with one member of staff being trained in looking after children with disabilities and special needs, were happy to have Jessica, and both girls settled in very quickly and happily.
It took myself and my husband a few days to wind down, and gradually relax into the flow. However, what caught me unawares was that the same went for Jessica. After a couple of days, you could see Jessica visibly relax, and start to chill out. I don’t know why this surprised me – I find our life stressful, and I don’t have half of the challenges that Jessica faces every day.  It was lovely to see her so relaxed, and having such a great time. Jessica and her sister were in the pool every day, which they both loved, and they both really enjoyed the kids club. We also went to a water park, and spent the day taking both girls down the slides on our laps – they started giggling at the top, laughing out loud all the way down and then laughing again when they came back to the surface after being submerged at the bottom!
The holiday was a complete success –  I got to spend some proper time with my husband, and we had a great time all together as a family. We have some amazing memories and have come home rejuvenated, and ready to face the challenges ahead. And I think that applies to Jessica too!