Sunday, 29 December 2013

Saturday, 28 December 2013

A Christmas update:


 Following my previous post which you can read here, I thought I should post an update.
 Jessica was discharged from hospital just before Christmas, thank goodness, but there were a few conditions....

We have to monitor Jessica's oxygen levels, heart rate and breathing rate while she is asleep, and administer oxygen to her if she needs it. We also had to change our Christmas plans as the hospital weren't happy for us to stay away from home overnight, in case we needed to contact the hospital for support/go back to the hospital at night if we needed help. 

As long as Jessica's situation stays stable with the above care, we are able to stay at home, and will be assessed by ENT at Great Ormond Street in the New Year.

Christmas was a bit of a blur for me and my husband. We went straight from the hospital into "all things Christmas" without a chance to assimilate all that has happened in the last week. Added to which we are exhausted - having not got much sleep in hospital, now getting up to Jessica at night approximately every 1 to 2 hours, plus the extra driving to and from family as we couldn't stay overnight.

However, the girls seemed to enjoy themselves at Christmas, which is the most important thing. They loved being with their extended family, especially their cousins. Jessica also went to a pantomime on Boxing Day, which she REALLY enjoyed!



We hope you all had a lovely Christmas, and wish you all a Happy New Year!

Tuesday, 24 December 2013

The difference a week makes

I am going to use an American term here, because I can't think of a British one that is printable.

Rett Syndrome sucks.

SUCKS.

Not only are the girls "trapped" in their bodies, unable to express themselves and profoundly disabled, but they have a host of medical complications that continually evolve to further compromise the quality of their lives, and increase their suffering.

And for every medical complication comes its own medical team and series of appointments. Each complication then overlaps with the others and every time you put in place something to try and manage one complication, it seems to make another one worse. I wrote here about all the appointments we end up going to. Well, we have had a small break from appointments (purely by coincidence) that has allowed Jess to have her first half term at school pretty much appointment-free, which has been good. However the appointments have since been beginning to stack up, and we are back to averaging around two a week.

Jessica's ability to swallow has deteriorated, and we are struggling to keep her hydrated (she is currently "drinking" by being fed thickened fluids on a spoon) and to take her medicines without her coughing and spluttering. Mealtimes are also difficult, as she has a good appetite but meals just take so long as she is now often so exhausted after school that her swallowing is even more compromised. She had a Videofluoroscopy last week which showed that she is struggling with swallowing, and supported the medical advice that Jessica needs a gastrostomy.

However, a gastrostomy can often make reflux worse in girls with Rett Syndrome and we are (I think - it's hard to know) barely controlling Jessica's reflux with maximum medication. So the surgeons are now considering also giving Jessica an operation to try to control her reflux at the same time as the gastrostomy, a Nissen Fundopliction. Now I don't like the idea of this at all, but neither do I like the idea of Jessica being in pain due to reflux again. Equally, the dentist feels that it may be a good idea as currently the acid from her reflux is causing the enamel to wear off her teeth. A Nissen Fundoplication would mean that her reflux is controlled by the time her adult teeth come through so they would not be damaged by reflux.

So, Jessica is going to have a few more tests to establish how severe her reflux is, and the surgeons will then decide if she just needs a gastrostomy, or both a gastrostomy and a Nissen Fundopliction.
 
Jessica has also been reviewed by her Spinal Team. It has been decided to move from her Lycra body suit to a rigid brace to try to slow the rate of the curve of her spine, that I wrote about here. The downside of the rigid brace is that it may reduce her mobility even further, but this is already limited. She rarely crawls anymore, and is often reluctant to sit upright on her own now - something that she was doing up until recently. We were given the rather depressing statistic that around 60% of girls with Rett Syndrome, who present as Jess is now, will need major corrective spinal surgery before they reach the age of 10. So given this, and the fact that she hasn't really got much mobility to lose, it has been decided that it is time to try the rigid brace.
 
We also now have a sleep system - Symmetrikit - that we are using to keep her spine in a straight line at night. This is taking a while for us all - mainly Jess- to get used to and find the position that suits her best. However it does stop her moving around the bed quite as much, as we normally have to go to her regularly throughout the night to re-position her, as she is often at 90 degrees or has her feet on the pillow! 
 
Jess also went into hospital this week for a 48 hour EEG with video monitoring to see if any of her strange night-time behaviours that I wrote about here are actually seizures that need treating.  Initially, they said that no, none of the behaviours I had highlighted to them looked like seizure activity - abnormal, yes, but "normal" for Rett behaviour and brain activity. However a few days later they then they contacted us to say that, following a more detailed analysis of the data they obtained, they did see some seizure activity and as a result Jess has now been started on an anti-epileptic drug.
 
Normally, this would be devastating news but it has actually faded into the background in the light of what else has happened this week. While Jess was in hospital having the EEG, she started having trouble breathing at night, with long gaps between breaths and significantly falling oxygen levels when she was asleep. We have now been in hospital a week, with Jess on oxygen every night. She has had a slight cold (but not too bad for her) and one theory is that her (already huge) tonsils became inflamed with her cold, causing her airway to block when she falls asleep. So we are waiting to see if things improve when her cold gets better or if this is a long term problem which would need further tests to see if it is her tonsils causing the problem (obstructive apnoea) or her brain (central apnoea). Even if things do improve when her cold gets better, the problem stills needs addressing as she can't go into hospital every time she caches a cold!
 
With this in mind, the hospital are organising home oxygen and an oxygen monitor for us to monitor her oxygen levels at home should we need it on discharge from hospital (whenever that may be) pending further investigations or at any point in the future.
 
I can't believe all this has happened...
 
Home oxygen and an oxygen monitor. Seizures. A rigid spinal brace. All in the space of a week. The week before Christmas no less. With a gastrostomy, possibly a Nissen Fundopliction and now maybe having her tonsils out in the New Year.
 
Really???  Seriously???
 
Rett Syndrome sucks.

Sunday, 15 December 2013

Tuesday, 26 November 2013

The Clever People

Sometimes, usually at night, Jessica will just sob. It is not a cry of pain, or of fear (like when she is having one of her night terrors or possible seizure episodes). It sounds more like a sob of despair. And clearly I have absolutely no idea what is bothering her. However, I do wonder if she is upset about all the things she has to put up with. About having Rett Syndrome. And to be fair to her, I am amazed that she doesn't get more upset or frustrated more often.

When Jess is upset like this, I climb into bed with her, and we curl up together and I tell her about The Clever People. The Clever People are the scientists working around the world to find treatment and "The Cure" for Rett Syndrome, and those who work for Reverse Rett in the UK and RSRT in the US.

The research into treatments for Rett Syndrome (including ground-breaking gene therapy) is progressing at an amazing speed, and is currently purely funded by donations and money raised by Reverse Rett and RSRT. Scientists believe that Rett Syndrome may be the first curable brain disorder, which could also lead to huge progress in the treatment of other conditions such as Alzheimer’s disease, Parkinson’s disease and autism. Pharmacuetical companies are beginning to take notice, which is amazing, as it means that the current research is looking VERY viable, and that they may begin to provide funding in the future for research and clinical trials, speeding up the process even more.

So I tell Jessica all about The Clever People, and how they are trying so hard to make her better, and that it WILL happen, but that we have to be patient. I promise her that one day she WILL be able to talk to us, either because "The Cure" has been found, or because she will have an eye-gaze computer. And Jessica does calm down. I have no idea if, or what, she understands but when she is upset like this, hearing about The Clever People seems to reassure her.

Of course I want a cure for her. More than anything. I want her to live her life as she should, I want all the medical complications that are causing her pain and suffering to be taken away. And I want to get to know her - what she is thinking, feeling. So it goes without saying that I hope for The Cure.  And I truly do believe that one day it will exist- but the big question is when? In Jessica's lifetime? In my lifetime, so I am able to get to know her as I wish to? In her grandparents’ lifetime?


I don't live my live by the motto "when there is a cure...." It feels far too distant to make a significant difference to our day to day lives, and I feel like I am would be setting myself up for a fall by getting over-excited by something so uncertain and possibly so far in the future.  All we can  do is live our life the best we can, in the present.

However, last week I was talking to someone who was unfamiliar with Rett Syndrome and was explaining about all the research that is going on. They responded in amazement, and said "Wow, just imagine, Jessica's life could be completely unrecognisable in 10 years time".  And I had to admit that, yes, this is a distinct possibility and it stopped me in my tracks, trying to imagine what "The Cure" might look like. And then, I read the Annual Report from Reverse Rett Research Trust. This details all the current research into finding a cure for Rett Syndrome, and all the approaches being taken to alleviate some of the symptoms. It is amazing and all tantalising close, and yet so far away at the same time. 

But dare I say it, I might be a getting a little bit excited.....  come on The Clever People!!


Tuesday, 19 November 2013

Daydreaming. Then back to reality....


Last week I was browsing through some of the many shopping catalogues which are sent out in the run-up to Christmas, and I saw the most amazing bunk bed which would have fitted perfectly in Jessica's room. I then spent several pointless minutes daydreaming about living in a non-Rett world where the two girls could share a room, and more than likely fight over who got the top bunk.

Later in the week, an Occupational Therapist from Social Services came round to assess Jessica and our house, and to see what changes we could do to make things easier for us. Well, from daydreaming about a pretty, shared girls' bedroom with bunk beds, I was brought back down to earth with a bump. Discussions about through-floor lifts, ceiling hoists, ripping out our only bath to make space for a wet room were all a bit depressing, to say the least.

We moved into our current house when Jessica was 9 months old. As that was over a year before her diagnosis, we had no idea of the secret she held inside. At the time we said we probably wouldn't want to stay in London indefinitely, and would probably look at leaving the city at some point in the future. But we found a lovely house, in the area that we wanted, and moved in and made it a home. Our home. We moved in, we re-did the bathroom immediately (as when we turned the taps on, the water ran through to the kitchen below) and made other improvements and additions, including Jessica's little sister! And here we are. Settled. We still love living here, have just got Jessica settled into an amazing school and do not feel ready to leave the area. We definitely do not feel in position to take on the challenge of deciding where we might want to be, and then trying to find our "Forever House" there. And our next home definitely needs to be our Forever House, due to the amount of work and money it is likely to need to make it suitable for Jessica in the future.

However, I am very concerned that we are going to be pushed into making some decisions long before we feel ready. Jessica is getting bigger and heavier, and carrying her up the stairs, lifting her off the floor, bathing, toileting etc. are all gradually becoming more of a challenge.

It is difficult to know what to do for the best- it is such a big decision, and we can't afford to get it wrong for many reasons. But we can't carry on with our current situation too much longer either, so burying our heads in the sand isn't an option. Unfortunately.

Wednesday, 13 November 2013

A happy half term

Well, we have survived another school holiday - mainly by going away as a family for the whole week, renting a cottage in the countryside.

There were presents to say well done for settling in at school so well:




Shopping to unpack:


Streams to paddle in:

Pumpkins to carve (Jessica chose the design!):



Ducks to feed:

Swings to go on:

Early morning crafting (neither girl made the most of the extra hour in bed that turning the clocks back gave us!):

Country walks (which Jessica loves):


Deserted beaches:


Lunches out:

And new favourite toys:
The Witch from Jessica's favourite book "Room on the Broom".




All in all, a good holiday.....





Friday, 8 November 2013

She CAN do it: eye gaze computers

Jessica has had a few trials now on eye gaze computers. The best way to explain this amazing concept is to imagine that you are using a computer, but instead of moving the cursor with your hand, you move it on the screen using your eyes. You can then "click" on something by holding your gaze on whatever you want to click on for a pre-determined length of time.
 

Jessica was amazing with this piece of equipment. I don't have any videos as I was just too stunned watching her to take any! Jessica showed that she thinks systematically and logically by how she approached the games and puzzles. She showed that she is strong-willed, understands instructions very clearly and has a sense of humour. I think I know Jessica quite well, but even I learnt so much about her, and what she is capable of in just a brief 30 minute session.

 

Just imagine if she had access to such a computer all the time...She could play games, use it to demonstrate her learning, experience some independence, control some of her environment, learn to communicate with us clearly - the list goes on and on. However, such technology does not come cheap. And while there are children in our borough who have been allocated eye-gaze computers, they are children who are very physically disabled, but don't have significant, or indeed any, learning difficulties. And no matter how much I say that Jessica is cognitively alert and able, or indeed her speech therapist does, it doesn't mean anything unless we can convince the budget-holders that she is able to use and benefit from such a device. And to be fair this is very reasonable. It is a  LOT of money to be allocated to one child.

 

However, this is where things get interesting. Rett Syndrome is relatively rare, and at best most professionals have only worked with a few girls with Rett Syndrome, if they have even heard of it at all. So I imagine most people end up Googling it. And most of the information around says that girls with Rett Syndrome have profound learning disabilities and are incapable of learning. But this is not necessarily true, as many parents of Rett girls have been saying for a long time. Girls with Rett Syndrome are trapped in their bodies, unable to express themselves
- they have no verbal voice, and limited physical ability, BUT what they do have is eye control, an irrepressible urge to be sociable and form relationships, and a definite ability to understand far more than they can easily express.
 

With the advent of technology such as eye-gaze computers, this is becoming more and more apparent, and the abilities of these girls are becoming clear. This is beginning to become more accepted, and articles are being published and research is being carried out.
Eye-gaze computers are the only way that these girls can access the world, learn and reach their potential.
 

We are therefore in a unique position when requesting this piece of equipment. Usually
, when requesting some level of support, equipment or service, you have to demonstrate how "bad" the child is, and why this resource is needed. We, in contrast, need to demonstrate how absolutely amazing Jessica is, and show that she is capable of using an eye-gaze computer to its maximum potential, and to show  just what a difference it could make to her life.  Wish us luck!!

Wednesday, 30 October 2013

Strictly speaking....

Summer has turned to Autumn, the evenings are getting darker, and the age old debate has begun: 'do you watch X Factor or Strictly Come Dancing?"

In our house it is Strictly all the way - I have always loved it, and now both Jessica's little sister  (Little Miss Chaos as she is known, or LMC!) and Jessica love it too. LMC dances, twirls and claps her way around the living room during the dancing, and Jessica giggles the whole way through.

It is an obvious thing for Jessica to enjoy - music, lights, movement, sequins.... all things she loves, put together. And it creates a great family moment, an opportunity for all us girls to bond and enjoy something together. I love it!

Jessica watching Strictly Come Dancing

Wednesday, 23 October 2013

Mmmmwah!

Imitation is a huge milestone for babies and children. Copying what they see others do and say is one of the main ways they learn about the world. However, this is not something that Jessica ever did, even before she regressed. Or at least not noticeably.

The other day, I was sitting with Jessica, blowing her kisses and suddenly realised that she was trying to copy me. She was trying so hard, and was so proud of herself when she managed to do it. It is quite subtle, that I will admit. But she is doing it! And even if you can't make out the kisses on the  video below, you will get to see her being very cute!



Saturday, 5 October 2013

When She Cries


I wrote here about the best noise in the world- Jessica laughing. However, the flip side is also true. I really can't stand it when Jessica cries. And we are lucky. Compared to some girls with Rett, Jessica doesn't really cry a lot. I normally manage to take most things in my stride, but Jessica crying is not something I have a coping mechanism for.

But it is not rational. When Jessica's little sister cries (she is 16 months old) I know that it is because she is tired, or because I have taken away the remote control or telephone, saying that they are not a toy. I normally stay very calm and relaxed, knowing the moment will pass; and sometimes mildly amused if it is a relatively minor thing that has caused her to think her world has come to an end.

However, when Jessica cries, it is completely different. Even if I think I know why (if she is tired, for example) I still get very stressed. But what if she is tired and also in pain? Does she want to tell us something or do something and is really angry and frustrated that she can't? Is she bored? Then I go down the path that no parent should ever have to consider...  Does she hate her life? Is her quality of life reasonable? And then the plea (made to whom I don't know!) that this is not the start of typical Rett Girl crying ......

All these thoughts and I am sure that the majority of the time, Jessica is actually upset far less than your average 4 year old, and when she is, it is often because of the same things that cause your average 4 year old to be upset. As I said, we are very lucky that Jess doesn't cry a lot more. And long may it continue, as I don't know how I would cope.

Wednesday, 25 September 2013

A colourful day out

This weekend we went to the Colourscape music festival. We had been before, but it was a couple of years ago, when Jessica was just two (and only just diagnosed). However, we all really enjoyed when we went previously, and we thought that Jessica would like it again and that her little sister would find it fun as well.

As part of the experience, you have to put on coloured capes which change shade as you walk through the different coloured domes, and there are musicians and other performers as you go around. While we were queuing outside to go in, we showed Jessica leaflets with photos of the Colourscape, and she became very excited. I can't think that she remembered going before, but maybe she understood that we were going to do something different and exciting.

As predicted, it was brilliant and very "sensory", with all the different colours and the music. Jessica's little sister just ran around laughing (she was on reins as it would have been very easy to lose her in there) and Jessica just loved it. Every time we came to a fork in the tunnel, we tried to let Jess chose which way we would go next -  she seemed to like the red tunnels best! When we got to the centre, there was a music performance going on, which Jessica loved, and also one of the musicians came over and performed a piece especially for her (buggies aren't allowed inside, so it was quite obvious that she was in a wheelchair). Jessica really connected with the musician, with lots of eye contact, smiles and laughter.
Jessica getting excited while waiting to go in


 


the tunnels that you walk through

Jessica's little sister






Jessica enjoying the music


And for a comparison, here are some pictures of when we went in 2011:












Sunday, 22 September 2013

All grown up

Jessica is now officially a schoolgirl!

She had her last day at her lovely nursery over the summer- well, actually she missed her last day as she was ill with an ear infection. However, we went in when she was better to say goodbye
to everyone. I (naively) assumed we would just say goodbye to the staff, but no. The Special Needs co-ordinator took Jessica into the nursery room to say goodbye to all the other children as well. They all sang their "goodbye song" that they sing when someone leaves, and then those that wanted to queued up to have a hug with Jessica. Nearly every child wanted to hug her, some several times! It was so sweet, and the end of an amazing experience for Jessica. There were a few tears (and not just from me!) as we bid farewell to these people who have come to mean so much to us over the last two years, and who have gone above over and above their job description to help us come to terms with, and cope with Jessica's diagnosis (and all that it entails). And, even more importantly, who have also fallen in love with Jessica and truly believe in her ability and potential.

And on to a new beginning, a new school, new staff, new therapists. Jessica has now done 2 weeks at school. In the first week, Jessica just went for a couple of hours in the morning, with me staying with her. The following week she stayed for lunch for the first two days, and then did three full days, including going to school and being bought home by school transport.

Jessica seems to be settling in well. She started by being relatively quiet, but clearly taking it all in, and is now beginning to come out of her shell a bit more. I really liked being able to stay with her for the first week, as it meant I got to know the staff and the routine, so I have some idea of what her day is like. I also got to meet her classmates, who are both amazing and adorable. It was also really good to see what kinds of activities the class do, and how the staff make the day enjoyable, educational and yet accessible for a group of children with such a wide range of abilities. Jessica seems to be getting used to the school bus - apparently she giggles the whole way there and back, and one of the older children cries when Jessica gets dropped home, as she loves sitting next to her on the bus!! It is also really beneficial to have all Jessica's therapists (Physio, OT, Speech and Language) in one place. I was watching them assess Jessica in the classroom and it just worked so well. They could discuss everything between them in one session, whereas before they would tend to see Jessica separately, and then email each other. So what was achieved in 30 minutes in school would have previously taken several weeks, lots of emails and some chasing up on my part!

One thing I am unsure about (and it is relatively minor in the scheme of things) is Jessica's uniform. The uniform is not compulsory, but having seen the amount of mess the kids get into (painting, sticking, cooking, gardening etc) I am reluctant to send Jessica to school in her "nice" clothes. But choosing her outfit every day is something that Jessica is very keen on, and I worry that by putting her in her uniform I am taking away one of the few areas of independence she has, and one of the few ways she has to express her personality. So we have compromised, and are trialling giving Jessica a choice of which hair-clip to wear instead. As you can see from the photo below, on this day she choose a purple sparkly one!! She looks so grown-up in her uniform!





Wednesday, 18 September 2013

Jessica's point of view

While we were away over the summer, we went out for lunch at a pub with an amazing view, next to a river. We choose it especially for Jessica, as she loves the water - either swimming in it, bathing in it, or just looking at it.

We arrived, and carefully positioned Jessica so she was facing the river, but not directly in the sun. However, she immediately started moaning and was clearly not very happy. Bemused, I went over to her and started to ask her what the matter was, and to say that we had come here especially for her, but as I knelt down next to her, I realised what the problem was. This was what she could see:


 
(I'm sorry this isn't rotated, I really need to learn how to do that!)
 
 
After we moved the cutlery out of the way, Jessica was very happy, and ate her lunch enjoying the view:
 


Lesson learned: always check what Jessica can actually see from her wheelchair!

Sunday, 15 September 2013

August 2013

Well, despite normally dreading the school holidays (no groups to go to, friends on holiday, nightmare to leave the house with both Jessica and her little sister and no other adult as both children need assistance to do EVERYTHING, including being carried/pushed), August has gone by in a flash.

Jessica has had a good summer, I think. We went to stay with both sets of grandparents (separately, they live at opposite ends of the UK!) as well as spending time at home in London.

In addition to going to see her favourite story performed at the theatre, Jessica also went to see the The Lion King in London (which she loved- lots of "old" ladies kept tapping me on the shoulder and saying how lovely it was that Jessica was enjoying it so much!) and she also went to a kids' show at the Edinburgh Festival.

We met Father Christmas at the Edinburgh Festival (he was doing a show there, obviously!) Jessica clearly recognised him, and was very excited to see him! We also went to lots of farms, parks, swimming pools and the beach (where she fell asleep!) There were lots of hugs and kisses, and numerous animals which Jessica loved - and she demonstrated the best hand function that I have seen from her in a long time when she wanted to stroke some of the animals.....










Friday, 23 August 2013

Jessica's favourite way to relax!

I posted here how some Rett families often say that they love seeing their girls asleep, as it is the only time their bodies look at rest, and how this is not the case for us as Jessica's sleep is so disturbed.

However, there is one place where Jessica is completely relaxed - in the bath. We have a bath chair for her, to make lifting her in and out slightly easier for us, but this doesn't let Jessica fully recline in the bath. So sometimes, as a special treat, we don't use the seat.

When we place Jessica in the bath, she immediately lies back so her head is in the water. You can then visibly see her relaxing, and the stresses and the strains of the day easing away from her.

(Sorry the photos are not the right way up - I couldn't work out how to rotate them!).



 
 

Thursday, 8 August 2013

Bureaucracy


I have thought long and hard about whether I should post about the various issues caused by having to liaise with our local council/education/health service. But it is such a major part of having a child with complex needs and this blog would not be a true reflection of our life if I didn’t mention the stress, frustration and upset that this can cause from time to time.
On the whole, Jessica’s team are brilliant, and I like to think that I have a good relationship with the therapists and her nursery. However, when you get beyond the frontline contacts, and start having to deal with managers, budget-holders and the general bureaucracy of the local council, things become a lot different. 
It can also be exhausting. Trying to chase someone to sign a form to authorise the payment for a chair that was ordered in JANUARY of this year, for her to use at nursery - that she still doesn’t have.  Having to amend a significant report (that is very important for resource allocation) that bears no resembalance to Jessica (apparently, she can use her hands well and feed herself!) - that took two weeks, two meetings, several phonecalls and a lot of upset to sort out. Added to which there was a complete lack of communication regarding Jessica’s school place that led us to believe that she had been allocated a mainstream school instead of the special needs school we had requested. 
It took 10 months, and a ridiculous amount of work and effort on our part, to get Jessica a suitable wheelchair, with our local service suggesting it was perfectly acceptable for Jessica to only leave the house for 2 hours at a time, as this was how long she could tolerate the chair they originally gave her before she became too uncomfortable to sit in it. We have also been waiting nearly five months to trial a piece of equipment that the council has acknowledged that Jessica needs “urgently”, and had to fund several pieces of equipment ourselves, because there is either “no funding” or there is funding, but it will “take too long” and the equipment will be pointless by the time you actually get it if you wait for the funding to come through. This is in addition to me having to carry out my own assessment of Jessica in order to use a particular service (using the council’s paperwork that they had emailed to me) because someone was off sick, and there was no-one else covering their work.
All this takes up so much time, energy, and thought. In the daytime I am trying to look after, play with and enjoy being with my two gorgeous daughters. I don’t want to be on the phone or on the computer constantly trying to sort all these things out. And in the evenings, when I am exhausted from the day, and (barely)surviving on very little sleep, the last thing I want to be doing is sitting down to rattle off a million emails. Somewhere in all that, I am also trying to lead a normal family life, and deal with the cooking, laundry and other general household “stuff”.
I love my daughter dearly, and I want to be the best mum I can to her, and for her to have the best chance in her life to reach her potential. I just wish it wasn’t made so very difficult by the services that are supposed to help.

 

Monday, 5 August 2013

Going to the theatre

I love taking Jessica to the theatre – she always seems to enjoy it, and it is one thing she can experience in exactly  the same way as everyone else.

Jessica was lent (given? I'm not sure they are getting it back!) a book by a good friend of ours, called "Room on a Broom". It quickly became a firm favourite -  it is not unheard of for her to request it to be read to her 6+ times in a row, always accompanied by howls of laughter. So when we found it had been turned into a theatre show, we HAD to take her.

During the show, Jessica was very quiet, and at the time I was a bit worried she wasn’t enjoying it as much as I had expected her to. But then that evening, she was on a complete high, and everytime I said the witches’  “magic spell” she dissolved into giggles! So I think she did enjoy it after all.
Sorry the videos are a bit dark, Jessica was supposed to be winding down for bed (!) so we only had a little lamp on!
 

Tuesday, 30 July 2013

Reflux

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!
 

 

Tuesday, 18 June 2013

The best sound in the world!


There is one sound that I never tire of hearing. It will always lift my mood and make my day. I don’t even mind being woken up by it (and that says a lot, given how little sleep goes on around here!). That sound is the sound of Jessica giggling. Fortunately for me, Jessica giggles a lot!

Wednesday, 12 June 2013

Going round in circles

There is so much bureaucracy that goes with having a child with a disability; and numerous forms to fill in and questions that you have to answer.  I am getting quite used to the ones now that ask:

”can your child stand?” –answer: ” no”, reason: “she has Rett Syndrome”.

Next question: “ can she walk?” – answer: “no”,  reason: “she can’t stand”.

Next question “how far in metres can she walk?” –answer: “0 metres”, reason: “she can’t walk”

You get the idea……

However, I received a puzzling letter the other day saying that the way a particular part of Jessica’s care is given is being restructured by social services.

The letter said I could choose from option A, option B or option C. But that I could only tick option A or B.

 Clearly, I wanted option C, as otherwise life would be too simple!

The letter then said I had to respond by the 28th May, to indicate if I would be attending a meeting about the restructuring, being held on the 14th May.

The letter also gave no idea of where the meeting was being held. So I rang the phone number that was given for you to “ring if you want any more information”, only to be told that they don’t give information out over the phone, and that I have to go to the meeting.

I gave up at this point, and just wrote on the form that I wanted option C.
I got option A.  Hmmmm..........

Wednesday, 5 June 2013

A year gone by

A few weeks ago, it was Jessica’s little sister Anna’s first birthday. I can’t believe she is a year old, it seems to have flown by, while equally I can’t really remember what it was like before she came along!

To celebrate Jessica  and I made Anna a cake. She is still in her pyjamas (it was that kind of day, what can I say!) and I am not sure we would have passed any food hygiene regulations, but Jessica and I thoroughly enjoyed ourselves!


 

Thursday, 30 May 2013

School

 
Jessica will be starting school in September. For any family this is a huge milestone, and the process of choosing and applying for schools, and wondering if your house being 0.1 of a mile out of the previous year’s catchment area will make a difference, is all very stressful.
 
But add a disability and/or special needs into the mix and the process just got a whole lot more interesting. Inclusion, segregation, resources; everyone seems to have an opinion on this – regardless of whether they have any special needs experience or even know Jessica. Comments such as “but she has to go to a ‘special school", “it’s not like she can learn anything”, or the other extreme “but surely your daughter isn’t disabled enough to need (whispering very quietly) a special needs school?”
 
In theory it could have been a difficult decision, but actually, it turned out to be a pretty easy choice. Jessica loves the chaos and mayhem of being around her mainstream peers, both at home with friends and her cousins and at nursery. But she does find this environment distracting, and when she has learnt new skills they are often evident at home a few months before she is able to demonstrate them at nursery. Her needs are also very complicated, and while she is clearly very able to learn, she needs the right equipment and people around her in order to access activities.
 
We looked round a variety of mainstream and special needs schools, and we have just found out that Jessica has been allocated to our top choice of school. We are really excited about this, as it seems like the perfect choice for her, and we really do think she will do well there.
 
It is a special needs school attached to a mainstream school, and pupils from both schools mix for playtime, assemblies, lunch etc. Some lessons are also mixed between the groups of pupils, so Jessica will maintain contact with her mainstream peers. However, the school has the skilled staff and the equipment that Jessica needs to access education and activities. More than that though, it was the atmosphere at the school that we loved – it felt like one big family. The staff are so passionate about the children, and as proud as any parent would be of what the children achieve.
 
Jessica had an appointment at the school the other day (it was nothing to do with the school, it was just coincidence that the appointment was being held there) and all the staff came out to see Jessica and say hello, and to say how much they are looking forward to having her there in September. The appointment also coincided with the end of lunchtime, and we saw all the children being escorted or pushed in their wheelchairs from the playground into their classrooms by the children from the mainstream school; it was so lovely to see.
 
We now have a few meetings set up with the staff at her new school, Jessica will visit a few times before September, and we are going to be given some pictures of her new classroom and teachers, so we can talk to her about it over the summer holidays.
 
And then a new era begins!
 

Monday, 20 May 2013

Friday, 10 May 2013

She is just a typical 3 year old girl


Sometimes, well quite regularly actually, Jessica tells/reminds me that inside, underneath all the Rett-ness, she is just your average 3 year old girl.

If Jessica wants to request something; a book, a toy, a drink etc, she will look at what she wants (we are trying to get her to then look back at an adult to make it more obvious, although she doesn’t always do this) or she will reach out with her hand and touch what she wants.

I don't like saying "no" to Jessica when she has asked for something, given the effort it will have taken her to be understood, and I obviously want to encourage her to initiate communication. However, sometimes circumstances and time constraints mean I have to.  Consequently, I can find myself saying things like “No Jessica, you can’t watch television, you need to get ready for nursery” or “No Jessica, you can’t play with your toy at the moment, you need to eat your breakfast”. And then I catch myself. These are normal interactions between  parents and their children. There must be thousands of parents saying those exact lines every morning!

More recently, Jessica was getting really upset at breakfast time, and I couldn’t work out why. Eventually I realised that it was because we were giving Jessica’s little sister Cheerios as finger food as well as her porridge, but we were just giving Jessica her porridge. I was worried that Jessica was upset that she can’t feed herself, but no. As long as I put some Cheerios in her porridge, she is happy. She just didn’t want to be missing out!

Every morning Jessica will choose what top she wants to wear from a choice of 2 or 3. However, I can normally predict which one she will pick. It will invariably be the one that is the most pink, or the most girly, or the most sparkly one on offer! Whilst shopping the other day, I let Jessica choose her new shoes – they were all of the same style but in different designs. These are the shoes that she chose:
 
She is just a typical 3 year old girl inside. We just need to find more ways to allow her to communicate it.