Wednesday, 27 February 2013

She is so vulnerable

Jessica has no sense of fear or danger ,which means that she can’t be left alone at all. She will often fall back from sitting into a lying position on the floor; although she will go down in a controlled way and protect her head, she won’t check behind her to see that she won’t hit a wall, or land on toys or another child etc. She will also just crawl off any furniture like a bed or the sofa, and will try to stand up from the potty even if you aren’t ready, despite not being able to stand independently or balance. 

The other day she was being looked after by someone I implicitly trust and, although Jessica was being held onto, she still managed to fall off the toilet.  Initially we thought she had just cut her lip, but actually she had managed to knock one of her top teeth, causing it to be slightly wobbly. So the next day we made an emergency visit to the special needs dentist. The dentist thinks the tooth will be OK, which is a relief. However, she did say that had it been more serious, she would have had to give Jessica a general anaesthetic to examine her.  This would be quite a big deal, as given our concern about seizures and all the other neurological oddities associated with Rett Syndrome, we have no idea how Jessica would react to a general anaesthetic. I know she will probably have to have one at some point (for example, even minor dental work such as a filling will require one) but I am dreading it. I was very relieved that, on this occasion, it wasn’t too serious. But it did highlight just how vulnerable she really is.

Saturday, 23 February 2013

Going to the theatre

Jessica loves anything different and out of her normal routine. She is also a bit of an adrenaline seeker (I put this down to having no sense of fear:  this is useful in that you can do lots of fun things with her, but also a liability as she has no sense of danger so will just crawl off the edge of the bed, or sofa etc.)  So loud noises, the highest slide, the bounciest see-saw are always going to be big hits. I decided that she might like the theatre show Stomp, which is on in London’s West End at the moment. I did have an ulterior motive here in that I have wanted to see it for ages, but have never been! The theatre was very old and not very accommodating in terms of wheelchair access, but the booking staff were brilliant and gave us the best seats to suit our needs. Despite it being a matinee, there weren’t that many children there, and out of the ones that were, Jessica was by far the youngest. She was clearly very excited when we sat down, and once it started, she didn’t take her eyes off the stage. There were a few atmospheric quiet bits that I was a bit nervous about, as Jessica has a tendency to make loud excited screeches, but she was mesmerised. She seemed to thoroughly enjoy it, and at one point was banging her hands on her knees in time to the beat!  
It made me think that I must do more things like this with her. More things that are different to her daily routine (as she clearly loves that) and more things that can stimulate her and entertain her. She obviously finds it difficult to entertain herself and, even with assistance, everyday toys can be a challenge for her, so I think it is really important to do other things like this. And I realise that I am very lucky that she doesn’t need a strict routine, and that she has a clear sense of adventure!

Saturday, 16 February 2013

Life is one big appointment

Those who know us, or who have tried to arrange to see us recently, will know that we have had a lot going on in the last 6 months or so. It is not looking after Jessica that has been putting pressure on us, or even the fact that we have a new baby. In fact, how well Jessica has been developing, and having her new little sister, have actually been pretty much all that has kept our heads above water the last few months.

It is not just caring for the disability that goes with having a disabled child; it is everything else that goes with it. We have had a run of so many different appointments; sometimes up to three a day (all in different places of course!). And with that comes chasing referrals, chasing doctors’ letters and making sure that communication between various teams comes together etc. I think Jessica could do with her own PA!

Jessica has had appointments with a neurologist, and then subsequent EEGs, sleep studies, ENT appointments, spinal clinic appointments, orthotic appointments, as well as her regular physio, OT, speech therapy appointments, meetings at nursery etc. On top of that, we have had appointments with reps about the bed, bathing chairs, potty chairs, wheelchairs, special needs car seats, high chairs, as well as communication aids such as eye gaze computers, switches etc. (I will do another post on these another time). In addition to all this, we have had to make decisions about applying for a school for Jessica to go to in September, which involved looking at a variety of schools and completing a very lengthy form to apply for her to have a Statement of Special Educational Needs.  At one point, I was about to say to Jessica’s team that I need a few less appointments, when they literally said, with diary at the ready, that we needed to make another nine appointments!

It has all been a bit full on. However, most of the equipment is sorted, and if we don’t yet have it, it has been ordered. A lot of the current medical assessments needed have been done, with a plan in place; and the school application is in (we will find out in April which school she has been allocated to) so I am hoping things will calm down a bit. I want to be able to see our friends again, and feel more like Jessica’s mummy, rather than just her key worker and PA!

 Until the next rush of activity at least.

Tuesday, 12 February 2013

What else does she know?

In July 2012, we started Jessica on high dose fish oil, as it has been shown to make a difference in girls with Rett Syndrome (I will post more about this another time). Since then, she has come on in leaps and bounds – coincidence? We will never know, but I am not sure it matters.
I am unclear if her understanding of the world around her has improved, or if she is just better at communicating her level of understanding to us. We are more and more convinced that Jessica understands what is being said around her. The trouble with Rett is that the girls obviously struggle to communicate, and some of the responses they may be able to use (such as pointing, or reaching out) can be very inconsistent. So one day all the connections seem to work, but the next day it just doesn’t seem to come together. Also her responses can be quite subtle, and you have to know Jessica well, and be alert to spot them, as they can be easily missed.
Sometimes, her responses are not so subtle, such as the other night when I asked her to go to the bathroom for her bath, and she immediately crawled off to the bathroom! Other days, it will be a look or a giggle at the appropriate time.  But now we are aware that she has a level of understanding of events and language, we are looking for it. Although I have to confess the most amazing discoveries have been made by accident.
Jessica’s favourite book at the moment is about different animals who go clothes shopping, and on each page is a different animal with the item of clothing that they bought. The last page is all the animals together in their finery at a party. One night, I was pointing out all the animals to Jessica, and asked her where a specific animal was on the page, not expecting an answer.  But to my amazement, Jessica reached out and touched the correct animal. I then experimented and it turned out she knew all the animals and could point to them when asked!  
Then in December, I was opening Jessica’s advent calendar with her, and asked her where the number 4 was, again not expecting an answer. But she reached out and touched the correct number. She is less consistent with her numbers, but we have been using flash cards for numbers and colours, and she now seems to know her numbers 1 to 10 and her colours!
It makes me wonder what else does she know that we don’t know she knows?  Things it hasn’t occurred to us to ask, or at least ask in a way that she can respond to appropriately.
While I was talking to a friend the other day about this (I had Jessica with me), I said that if there is ever a cure we will all have to watch out, as Jessica must know everybody’s secrets. Jessica immediately gave me a mischievous grin and started giggling……

Wednesday, 6 February 2013

Jessica's new bed

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 needed.

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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