Rainbows Christmas Party

Laura had a lovely time enjoying the music and disco lights at the Rainbows Christmas party! She especially liked a balloon flower that Mark made for her. It was nice catching up with staff and other families!

Christmas production

Just been to see Laura's Christmas production. It was lovely!! It was a medley of music and movement with a short nativity at the end. Laura actually had a couple of little solos as she couldn't do what the others in her group were doing and so went on first and then they did their bit around her. It was sad in a way that she wasn't able to join in with simple things like processing in a circle holding hands but that's Laura!

She was very good, on task for most of it, as were all the kids. Mick came along to watch too which was good and then we went back to the class for a cuppa and a mince pie. Laura wanted to play out but the playground was being used as a car park so she was very unhappy.

A new play area

There's a new indoor play centre opened in Loughborough and the Homecare carers took Laura there today - she had a GREAT time!! It's for 0-8 year olds but Laura can get away with being under 9 for some time yet I think! It's all soft play, ball pits etc and there's a cafe area for grown ups, so it's ideal at this time of year when it's cold and mostly wet outside. I may venture there myself in the Christmas holidays although will try and persuade someone else to come along too as not sure I am up to managing Laura out and about by myself yet.

Balloons and balls

Laura still loves playing with balloons and balls. She has mastered carrying four balloons at a time although it takes her a fair bit of trial and error to achieve it and is quite comical to watch! She has also adapted this to carry three and simultaneously kick the fourth!! Quite skillful really and I guess this sums Laura up, if she wants to do something then she can find a way but if she is not interested she won't bother. So sometimes we think she isn't capable of the most basic tasks/toys when she probably just doesn't see the point in trying.

Another big hit this birthday are some cute colour-changing bath ducks. They change colour whilst floating around in the bath. Lovely and very calming especially if used in the dark. A friend of mine at work bought them for Laura along with a light that can be attached to the side of the bath. This can be set to one colour or put on random colour change. All the carers who come to bath Laura love these so I must ask her where she got them from.

Seizure alarms

I got a package this morning from the Muir Maxwell Trust (MMT). MMT fundraise to provide free epilepsy alarms to kids under 18.

I'd heard about the alarms some time ago but had heard that they don't always pick up seizures with subtle movements, so I hadn't bothered to apply. Instead I've been trialling a Finnish alarm but that is proving troublesome as the Parent Receiver Unit really is inadequate. The firm keep trying to improve on it but that is proving expensive and time consuming sending the units back and forth in the post.

Meanwhile I heard last week that MMT had a new alarm, so I emailed with them and it turns out they have two different alarms: a seizure alarm which works on movement and an apnoea alarm which works on lack of movement/breathing. They recommend a combination of both for us, so I decided to apply. Being as they are free I figured I might as well try them before shelling out the £600 for the EMFIT alarm which is not quite there yet.

Anyway back to my package... it wasn't the alarm as I have to get a form signed first to apply for that but it was a MMT teddy called Max. They had sent it because Laura is the 1,000th child to receive one of their alarms! They asked if we'd do some publicity for this and I don't see why not, they're a very worthwhile cause and actually Muir Maxwell has Dravet syndrome like Laura so all the more reason to support their charity.

Hopefully the monitors will work for us. Watch this space!!

Happy Birthday Laura!

Wow, it's Laura's 9th birthday today!

She's had a pretty typical day but has enjoyed having the Happy Birthday song sung to her repeatedly and has taken 6 balloons to bed with her! Apart from that, she hasn't really acknowledged her birthday. She did enjoy ripping up the envelopes from her cards and it's nice to see the cards on the mantelpiece (but not sure how long she will permit them to stay there on display as in her mind they don't "belong" there as it's normally empty. But so far so good!)

Tomorrow she goes to Glenfield for the weekend and I am really looking forward to a lie-in in the morning. I'll do a bit of Christmas shopping but not much else over the weekend, although Mick and I have another meeting up at the kennels.

The epilepsy nurse has done an urgent referral for Laura's helmet but as it's the orthotics dept I don't expect we'll get an appointment anytime soon.

Ouch!

Laura had an accident in the school playground yesterday. Apparently her legs got all tangled and she walloped the concrete. Her face looks quite sore but she hasn't been troubled by it thankfully.

I've asked the school to see if the physiotherapist will watch her walking as I feel she is more unsteady and I'm worried she'll do even more damage next time. I wasn't happy with the school as they didn't ring me about it and so I got a shock when she got off the school bus. I put a note in her home school diary and the Head of primary rang today to apologise for forgetting to ring me.

Mirrors

I bought Laura a set of mirrors for her birthday. They're for special needs kids so cost the earth and I took a chance that Laura may not like them but as she loves foamy things and these are set into thick foam, I thought I may be on to a winner... and she LOVES them!

Actually it's not her birthday for another week but I'd left them on the kitchen table after unpacking them and she soon scooped them up to sit and examine them. She then took them to bed and got up with them yesterday morning. I had to prise them out of her hands before she went to school yesterday!!

A good week but sad news today

Laura had a good week at Rainbows and at school. No more seizures.

On Thursday Laura's school visisted Loughborough Fair. Laura didn't want to go on any rides, school said, which was a shame as she usually loves them, although she can be reluctant at first. Not sure what she made of Disney on Ice, Finding Nemo but no doubt she enjoyed the coach trip at least. They were very late getting back, almost 6pm rather than the 5pm that they'd expected!

Another one of the children on our Dravet forum has passed away this morning. I've had a candle lit all day in memory of her.

I had a hospital review yesterday and the surgeon has advised me not to return to work until after Christmas. I think it's because I had a bad infection and didn't heal as early as I should have done. It's frustrating but I have to take his advice as he knows more than I do and I'd hate to have a relapse. I emailed the Head and asked if I'd be able to go in for a few hours but she said that I wouldn't if I am signed off, which is a shame as I had hoped to do this.

Mick and I enjoyed our break in Norfolk this week. It was the first break we'd had since June and although it was only 2 nights, it was nice to have a change of scene and get some fresh air. I bought a decent pair of binoculars and did some bird watching at Titchwell Marsh whilst Mick did some longer walks with the dogs. I did manage a couple of 1-2 hour walks but that was my limit and I did feel very tired at the end of each day.

Today

Had a crisis to sort out at the kennels so we didn't get away to Norfolk as planned. We've managed to band aid it for the time being but there are probably huge changes on the horizon there in the next few months.

We're going to drive over to Thornham in the morning. The weather is freezing but I really need a change of scene and to escape for a few days, and it will give us a chance to mull over the kennels issues.

Laura had a seizure at school this afternoon. Looks like the electronic white board was the trigger. Not great as it's used a lot and most classes have them on all day long. She seems so very light sensitive at the moment. The sz was just after 3pm so she was rather subdued when she arrived at Rainbows, didn't eat at dinner time but perked up in the bath and was asleep when I rang at 9pm. Fingers crossed she is OK tomorrow.

This week

Laura's going to Rainbows this week. She was due to go in on Monday after school but they rang today to offer her an extra night tomorrow, so I will take her up in the afternoon tomorrow.

Laura's been "off" today. She had a seziure in the night (we think) as she slept in and had to be woken at 7 when the carer came to wash and dress her. She was bleary eyed and has been rather like that much of the day. She's had some short seizures during the day and slept for an hour after one not long after she got up this morning. She's not been herself although has had some moments when she has climbed on the table and the windowsill, and has enjoyed playing with water some of the day. Hopefully she'll be OK for her stay at Rainbows. These seizury days are coming every 7-10 days at the moment so hopefully she'll be fine and if not they will cope I'm sure.

Laura has a busy week at school with a trip to Disney on Ice in Birmingham on Wednesday and then on Thursday it's the fair and the Lions or Variety club pay for the kids from Ashmount to go on free of charge. She loves fair rides so fingers crossed the weather stays dry that day.Actually fingers crossed the weather stays dry all week as Mick and I are going to Norfolk for a short break. I really need a break and change of scene, although won't be able to do the walking we normally do, but some strolls will do me good and the sea air too.

Music and other triggers

Laura seems to be having more seizures on Thursdays and the initial trigger seems to be music as they are starting in music lessons. Sound and noise can be a trigger for Laura but it would be sad if music was a trigger too. I need to find out more about what happens in music lessons as she happily listens to music on CDs and DVDs at home with no signs of szs, but I guess if the kids are bashing cymbals and banging drums then that could be a problem for her. School agree that there is a pattern emerging with more szs on a Thursday, usually with the first happening in music.

Maybe it isn't the music but the room where the music lessons take place? I need to check with her teacher about that. When we saw the teacher earlier in the week for her parents evening she said that the flourescent lights in some parts of the school were troubling her. Perhaps it's the lights and the music. It's hard to know for sure.

I did mention the problem with the lights to the Occupational Therapist who came round for a home visit today and she will look into whether they can be changed for more natural lighting, or at least she will follow it up with the Head as it's hard to know who's responsible for this and who will pay for it. I know from our Dravet support group, other kids are troubled by flourescent lights so it's not a new trigger.

Dentists

Laura went to see the dentist a few weeks ago and got on better than with the old dentist. This one actually managed to have a reasonable look in her mouth.

Rather optimistically she referred Laura to the hygienist and today was her appointment. Laura was not in the mood for anyone looking in her mouth! She grabbed the little mirror and flung it across the room. Unfortunately it didn't get any better, so the hygienist gave up after 20 minutes, but she did suggest we try again in the Christmas holidays perhaps getting the first appointment of the day when Laura will hopefully be less grizzly.

Unfortunately she only works Tuesdays and so it's going to have to be a case of getting appointments in the holidays. It's always a pain when these people only work certain days (says she who works only on Mondays and Tuesdays!!). Our paediatrician only has Monday clinics (at Loughborough) and the VNS nurse only works Tuesdays. I hate having to ask for time off work for Laura's appointments, as I am sure school assume I can schedule for days I can't work. Mostly I do try and schedule these appointment for school holidays.

Anyway hopefully we'll have more look with the hygienist next month!

Rock cakes

Alex baked some rock cakes and flapjack this afternoon to take back to uni with him. Laura surprised us all by eating half a rock cake! She especially loved the fruit and as she doesn't usually eat sweet things, this was new for her!

Laura and Alex

Some pics of them in the garden this morning...

More balls!

Got gifted this on Freecycle...

Great for Laura as it has sounds, movement and BALLS!! She loves it!

Holidays

It's half term this week which is always a bit of a nightmare to keep Laura occupied. We have 6 hours of respite booked which is split into three lots of two hours. Yesterday the carers took her to Woodhouse Eaves park whcih is great for Laura as there is a swing with a disabled seat and also a climbing frame that is relatively safe for Laura. She had a great time and if the weather stays fine, Mick and I will take her again this afternoon. Laura spent an hour in the back garden yesterday and even played in her sand for quite a while whilst I collected flower seeds.

I've managed to book a week next summer at one of the Harriet Davis houses! http://www.harriet-davis-trust.brecon.co.uk/house1.htm

I've tried for the past 2 years but not managed to get one and thought I'd failed again for 2009 but there was one week free at the end of the summer holidays so have booked Harriet House which is in Tenby Harbour. Not sure if Mick will come with me as it's "No Dogs" so I may have to see if someone else will come along. It's a nice part of the UK and very convenient for amenities and has been adapted for disabled kids. Yippeee!

Balls!

Laura is really into balls at the moment. She has a few smaller ones and I will be getting a bigger collection for her birthday, but here are two more unusual ones...

The spiky one is a bumble ball which vibrates and when on the floor jumps around across the floor. The large one is a gym ball which Laura likes to bounce across the kitchen!

This week

One of the kids on our Dravet support group died from a seizure on Sunday night. He was only 4, and an only child. It's heartbreaking for his parents. We met them all a couple of years ago when we had a families gathering in London. I would like to go to his funeral but it's 3 train changes away and just too long a journey for me at the moment.

Yesterday I went to a parents support group meeting at Rainbows. It was the first one, so a good opportunity to meet lots of new people and get a free lunch! They are going to be monthly, hopefully on a Wednesday so I will get to go. Most people don't work so it seems it won't be a big problem choosing a day that everyone will be happy with.

Laura had a dentist appointment yesterday. It's been 18 months since her last check up as the dentist left and they have struggled to replace her. The new community dentist was very good and didn't get bitten once! Laura seemed to like the large lamp shining down on her and co-operated quite well. She needs to see the hygienist next month and that could be a whole different story!!! I asked again about having Laura's back teeth coated but this dentist maintained the same stance as the last one, that they won't give her a general anaesthetic just to do this. Sort of annoying as we have tried to get them to organise it around other GAs in the past 2 years but they have never managed to achieve it. Luckily Laura doesn't eat sugary things so her teeth are all pretty good but I do want them to stay this way.

Have strained a muscle from bending down to coax Laura off the grass on Sunday. I will need to see the doctor next week if it's no better.

It's (grand)dad's birthday today - HAPPY BIRTHDAY!!

A busy week

The start of the week was busy with a visit to the Wheelchair clinic to pick up Laura's new SN buggy. It's the same model just the next size although they have provided a better harness and seat. We had asked for a purple one (OK I had asked for purple, Laura can't care less!!!) but they gave us a blue one again. At least Laura will know it is hers and won't get confused with a new colour. We used it in the new car on Monday and she seemed really happy with her good view out the front window! She was also happy to be back at school when we dropped her back, so that is good to see.

On Tuesday Mick and I went up to the EMAS HQ in Nottingham. This was following our complaint about ambulance response times. We had complained back in 2003 and following that EMAS had put a "flag" on our address which we had been led to believe would ensure a faster response by the ambulances but this has not happened except on rare occasions.

Anyway it turns out the flag just says "child prone to fits - allergic to diazepam" which is insufficient and doesn't flag up the need for a proper ambulance not just a paramedic car. The manager explained the system in detail and showed us what happened at the time of the recent incident and why there was a delay. They did fail their 8 minute response time even with the paramedic (10 minutes) and the ambulance was a terrible response of 25 minutes, so 35 minutes altogether. The ambulance came from QMC!!!!! The bottom line is that they have not been sending 2 manned ambulances straight away which is what we requested back in 2003. They will do so now and will also put on a better description of Laura's problems which I will draft for them. So hopefully we will get better responses in future. One shocking thing to see was all the "Alert" addresses - about 1/3rd of all calls were to addresses with an "Alert" on them. These mean there is a danger or history of drugs and/or violence etc and these automatically require back-up and so tie up both a paramedic car and an ambulance. No wonder there are so few ambulances available. Grrrrrrr!

So that was the start of the week. The end was rather quieter thank goodness! Laura was at Rainbows and I did some walking. On Friday I walked down to the village centre to pick up a medical certificate from the doctors. It was a lovely day for a walk although it was exhausting and I saw some effects later in the day. I need to be careful not to do too much at a time but build up gradually.

Laura has been a bit "off" since yesterday. Her school nurse rang me late yesterday afternoon to say she had been called twice to attend to her as she was not responding in class. She said she was OK at the moment but were worried about her on the school bus. As it was almost home time and I was alone so couldn't manage to collect her myself, I told her to ask the driver to drop her off first. She seemed fine when she got home but I saw in her diary that she had had a seizure at Rainbows in the morning before school. Surprisingly they had not mentioned it to anyone although had put it in her seizure diary.

Overnight she was OK but didn't wake until 7am this morning which is late for her. She went very clammy and strange half an hour later and had an hours sleep so probably that was another seizure. Her SATs dropped to mid 80s during the morning but no sign of cyanosis so not too worried. She perked up at around lunch time and has been better since then so hopefully is back to normal.

Update

I've been out of action following my operation (hysterectomy) at the end of August. So lots to update on.

Laura's been doing better seizure-wise since we added Topamax in August. She is about half way through the weaning-on schedule and will be on the full dose towards the end of November. She has had a few seizures but nothing bad and even managed to go to school after a 6am seizure one morning.

Laura has changed her sleeping pattern for some unknown reason and is rising very early most mornings (often between 4am and 5am). She has dark rings under her eyes and is obviously not getting enough sleep but when she wakes, is wide awake and full of beans and won't go back to sleep, so we start our day very early most days. Thank goodness I am not back at work for a few more weeks.

The new car (WAV) has arrived although I can't drive it for another week yet due to my operation. We will be transporting Laura in it in her wheelchair for the first time on Monday as we have an appointment at the wheelchair clinic to have her new wheelchair fitted.

Laura's new piedro boots have arrived and are great, although I'm not sure she'd agree as she prefers bare feet! They are much more supportive than previous boots as they are much higher up her calf. Her walking is quite bad at the moment but hopefully these will improve things.

Not a good week

The week started OK and really there was nothing to suspect that things would go pear-shaped.

On Tuesday, Laura had 2 hours respite booked, so as usual, she went out with the two carers whilst I dashed to Fosse Park to get a birthday present for Mick. Not long after I got back home and just before Laura was due home, the phone rang and it was Mel, one of the carers. They were on the A46 and Laura was having a tonic clonic seizure. It had been going for 1 minute and they wanted to know what to do. I advised them to carry on home but if it kept going beyond 3 minutes then they would have to stop again and give her paraldehyde. I rang a few minutes later and they were coming up to the Quorn turing off the A6 and it had calmed/stopped (she wasn't sure). So they carried on home but when they got here it had started up again and she definitely needed oxygen and paraldehyde straight away. We also called the ambulance.

It took quite a while (too long and def over 8 minutes) for a paramedic to arrive. Mick was still on the phone to the ambulance control and advised them we still needed an ambulance PDQ. The paramedic confirmed this as he had been before and knew Laura's history. It was ages and ages for the ambulance to arrive but as soon as they did they carried Laura into the ambulance and we bombed down the A6 to LRI. It was 2 o'clock in the afternoon by this time and very busy even with the siren and blue lights it took 25-30 minutes to get there. Laura was thrashing around, still seizing all the way there. The ambulance paramedic told me that they were a Nottinghamshire ambulance and had been the other side of Melton when directed to us which was why they took so long to arrive. (Grrrr, I can feel a complaint coming on, not to criticise the people who came out but the system which has allowed this to happen again - we made a complaint in 2003 and they assured me they would send an ambulance not a paramedic and would place a flag on their system).

The team were waiting in Resuc and thankfully it was not too busy. I had to convince the ER doctor to get some lorazepam into her. He was pre-occupied with taking blood and I don't think he thought she was still fitting. Her heart rate was 150+ so she definitely was. When he finally gave her lorazepam she gradually calmed down.

We went upto the Children's Admissions Unit and stayed there for a few hours until we were transferred to Ward 14. Laura was totally out of it, as to be expected. They kept her on oxygen and a monitor for the first few hours and she was quite settled.

I stayed the night with Laura but only managed a couple of hours sleep, despite it being quiet on the ward. I just cannot sleep in hospital, mainly down to the nurses chatter and laughter.

Anyway, we decided to start her on Topamax. She definitely needs another medication as the small dose of clobazam and the stiripentol just aren't enough. She has been rather seizury for a few weeks now, mainly upset by environmental triggers like heat, light, noises, patterns...

So we will see how it goes. Laura came home yesterday and was thrilled to be back! She really is quite subdued in hospital and a different child in her own environment.

Is everything edible?

Laura has had crisps and chips, tomatoes and flowers! Not sure geraniums and petunia are good to eat though, so I'd better keep her away from the flowers! It's one thing picking them, another thing eating them!

Lots of tears and screaming today, not a happy bunny. Her mood is very up and down.

Eating again!

Since Laura came off Concerta (Ritalin), she has gradually started to eat a few things, not every day and not enough to sustain her, but a good start.

Today she has eaten quite a bit and it's not even 3pm. She started with some apple (she's always refused it before and generally prefers softer fruit). We only gave her apple because she was wrestling with Alex trying to get his half-eaten apple off him!! So we cut one up for her and she ate most of it. She particulary liked the core! Then she had some celery and nicked some bread crusts intended for the hens.

Finally she sat at the table and had a slice of toast, which she ate most of. Alex was sitting next to her eating a toasted sandwich (his staple diet) and she was eyeing it, so maybe we will try one of those next!

She has been more hyper the past couple of days so I guess the Concerta is totally out of her system. Perhaps we will need an alternative but we can discuss that with Dr Jay when we see him in the week.

Respite

Jenna from the Diana nurses came today and we went through the paperwork to initiate the respite from the Diana nursing team - we learnt a week or so ago that we had qualified for it.

We are going to get 8 hours per month, in two blocks of 4 hours. One will be a Sunday morning which I asked for so that I can get to Mass at least once a month, and the other will be an after-school session 4.30-8.30 which will particularly help me after my operation. In fact the first one is the afternoon she comes back from Rainbows on 5th Sept, so that is great timing! But before that they will try and do some getting-to-know-you visits and the first of those is next week.

The staff will have to be trained on the job with them having to be signed off as competent for each individual child which is rather cumbersome but how they operate. The paperwork was fairly horrific too as it's pretty much like they use on the Children's ward and more detailed than either Rainbows or Glenfield! But it will be worth it, especially to have some extra help after my operation.

House (again!)

The saga continues...

Our buyer has applied for a buy-to-let mortgage for his house as his sale fell through. That has finally been granted but they have had to amend their main mortgage and that is still going through, although hoping to complete tomorrow. Meanwhile our seller (Bartons) rang yesterday to say they don't think August is do-able and suggested end November!!!! When I'd got up off the floor, I mumbled yes well I'd have to discuss with Mick....

So we have been out this evening (Laura is at Glenfield) and come to the conclusion that we'll stay where we are. It's all too complicated with the buyers, the sellers and the building plans for no.5, and plus not to mention how close this is all getting to my operation, so we'll stay put and sort out what we need to here (basically CCTV from Laura's room to ours). Actually it's a big relief as I was starting to stree about it all, especially as the clock was ticking, we had no date and hadn't started packing. So just gotta tell the agents and the Bartons tomorrow.

Nappies again

After complaining (to Vera MacDonald, Lead Continence manager at the PCT) about the new nappies, she assured me that she would reinstate the Tena nappies for Laura. That was 4 weeks ago.

So today, with only 1 pack left, I went to Barrow Mill to pick up nappies for the next month. There was a chap behind the counter who was very unhelpful (not surprisingly he is leaving on Friday - good riddance!!), saying there was no new card for Laura and so no Tenas had been ordered. He offered to do nothing to help so I waited to speak to the much more helpful lady and she got Vera on the phone. She assured me she had sent a request through to Barrow but the girl who deals with it was off sick and the lady (Karen) covering her job was on holiday for a week and no-one else was allowed to operate the ordering system due to the lage amounts of money involved!! Yeah right, let's hope they don't both go under a bus then as they have no Plan B.

So it looked like I was going to have to accept the Euron (yukky) nappies until an order could be done next week, but good old Vera took herself down to the depths of Coalville Health Centre and found me three packs of Tenas in Laura's size! So I just have to trek over to Coalville to collect them. At least these will last for a couple of weeks and Vera promises that she will speak to Karen on Monday and make sure she places the order - I'm not holding my breath and may well nip into Barrow and speak to her myself! Apparently the ordering can only be done on a Monday for deliveries the following Monday, so very unresponsive system that is too. Good old NHS, gotta love it!

A good day

Laura had a good day today. She was at the Rainbows playscheme and was very happy to go this morning and everyone remarked on how happy she was. She only did a bit of skin picking and although she has been loud shouting a few times, it's no more than normal.

Laura is sleeping so much better without the Ritalin too. She slept until past 7 this morning and went to sleep very quickly last night too. So fingers crossed it continues.

Ritalin

I decided to try Laura without Ritalin for a few days. Someone posted on our message board that skin picking is a side effect of Ritalin and as Laura's skin picking has got worse since we upped her dose, I thought it may well be the cause of this behaviour.

So yesterday was day 1 without Ritalin. She was very loud and lively in the morning and started doing some of the behaviours that she hasn't done since she went onto Ritalin, like the repeated banging of the doors. I had to shadow her all the time which is rather wearing, especially as I had a lot of work to do for the conference next week.

In the afternoon we went into the garden because the weather had improved. It's been a while since she has wanted to go in the garden voluntarily and not wanted to come in within 10 minutes, so that was really nice to see. At first she just did her usual wandering around picking flower heads off and paddling in any bits of water she could find, but then Vicky and Lucy arrived and Laura went to the swing.

Laura's not wanted to go on the swing for ages. She stayed in for about 20 minutes!! Poor Lucy wanted a turn but I didn't want to get Laura off until she was ready, so Lucy did her jigsaws instead. Then Laura went on the slide, another first in the past year, and just pottered around the garden for a good hour. The sun was hot and bright and she did have a bit of a turn and I took her inside and bathed her - she was very grimy!! She had a really nice time in the bath but then fell asleep on the bathmat. I think she was quite seizury as she was jumping at the slightest noise.

Later, I got her up and dressed and she watched her DVDs whilst we had dinner. I did her feed rather late and paid for it as she threw it up all over her bed. YUK! It's back to the pump tomorrow I think.

This morning she slept in until 9am which is amazing! Ritalin causes insomnia so is probably the cause of her early wakening (usually 5 or 5.30). I did have her video monitor on as I was rather worried about her being asleep for so long.

So today is day 2 without Ritalin. She has been quieter this morning but did have a seizure just before her breakfast feed, so is obviously a bit unstable seizure-wise. We have an appointment with Dr Jay the week after next so I will discuss meds with him.

Fell out of bed

Laura went to bed at about 8 o'clock last night and as usual played and chatted for a bit before nodding off at about 8.20pm At 8.50 there was a crash from her bedroom and I found her on the floor having a seizure. It only lasted a couple of minutes and thank goodness she didn't seem to have hurt herself. She wanted me to stay with her until she fell back to sleep.

This morning she woke up a little later, is a little subdued and has had one seizure, so I will have to keep an eye on her today.

Moving or not?

Yesterday, we were almost definitely not moving, today we are back on.

This is where the stress really is, not the moving but the uncertainty in the whole process. I had pretty much got my head around not moving and was even relieved because of course in the short term (and even the medium term) it won't be an easy move. So now to know it is back on again, I am getting stressed about it.

Here is what happened... Yesterday our buyers decided to reduce their asking price by £30,000 because they said that their second sale had fallen through and that is what they needed to do to get it through on the sale of the first house alone. We basically batted this back to the agent to bat to our seller i.e. our house is being reduced by £30,000 what are you going to reduce your house by? The agent came back with some plan for everyone to put in £5,000 which meant we were still about £15,000 out of pocket, or maybe more (can't do maths in the middle of the summer holiday!!). So we said forget it, it's all off. The agent was, as far as we were aware, going to suggest that our buyer (who had bid on the house we are buying before us) buy the house we were going to buy rather than ours as it was £100k less and so they wouldn't have a problems with the mortgage. Whether she put that to them or not, I don't know but we got a call this afternoon from the agent that between our buyer, our seller and their seller (lost yet???!!) they had come up with the £30,000 so our sale was still going through at the original sale price. Difficult to refuse then really, so it is back on.

I DO want to move, but just wish it was all done and dusted. I HATE HATE HATE uncertainty and lastminute.com but guess I will just have to put up with it for a little while longer. Must just keep telling myself it will be alright, what will be, will be...

Gardening

Laura has taken to picking flowers! She likes the tactile experience and thinks the hens should do as she gave them some yesterday, I'm not sure what they thought of the pink petals scattered on their floor!

Heat

It's been very hot this weekend and it has troubled Laura a fair bit. She was very seizury on the drive over to Glenfield on Saturday afternoon so I stayed with her for an hour until she was settled.

Yesterday she didn't want to get out of bed until mid-day the staff said! They had given her melatonin the night before so maybe that contributed to her sleepiness. I think she was watching DVDs in her bedroom so that may have been part of the attraction!

In the afternoon they managed to persuade her to paddle in the paddling pool for a bit and then she didn't want to go back inside, which was fine. She slept well last night they said. She seemed happy enough when I went to collect her this morning but has not wanted to do much since being home. I decided against taking her to the Rainbows' playscheme today. It was too much with being away this weekend too and I think she's been pleased to just chill at home.

Our move is looking rather dubious now. Our buyers told us last week that they needed to sell his house as well as hers which was already completed. At that point it was progressing but now they have declared that it has fallen through. We asked the agent to find out what their intentions were now and they have asked for £30,000 off the asking price. This would be OK if we could get this off the house we are buying and so the agents are passing that on to them. Mmmm we will see but it's not looking good. TBH I am getting to the point where I want to stay put as it is all getting too close to my op and the new school year etc etc etc.

Respite

Glenfield rang yesterday to offer Laura an extra couple of nights this weekend as they've had a cancellation. So that is nice although not sure how happy Laura will be as she has been VERY reluctant to leave the house at the moment. Taking her to the playscheme has been very difficult and getting her out of the car almost impossible. They say she is happy during the day and has participated in swimming, cooking, painting, games and outdoor activities. But I think at the moment she's only really happy in front of the TV.

Jenna from the Diana nurses rang this morning to say that following their panel meeting they are going to offer us respite. It will probably only amount to a few hours a month but the good thing is that they can do the tube feeding which our HomeCare carers can't (at the moment). So they will come to do a whole heap of paperwork very soon.

OK must go and collect Laura from Playscheme now!

Bathtime toys

Most children like to play with rubber ducks in the bath but Laura decided a whole box of rubber gloves was far more fun!!

She will try and take anything and everything into the bath with her and frequently there is no room for her!

Motto of this story is... never let Laura out of your sight for 1 second, just because she is chattering to you doen't mean she isn't also getting upto mischief!

An eventful day

It started with a phone call from Alex this morning to say he was coming home. I was pleased and proud that he'd made this decision as I know Southwestern put a lot of pressure on them to see it through and keep going when times are tough, blah blah! But he had come to realise it wasn't for him and that the credit crunch was making it very tough to sell anything, let alone door to door. So I sent Mick out to get some steak for dinner to welcome him home. He's been living on real rubbish food - cheap pasta with a pack of 18p Asda sausages and tomato sace for the three of them, and greasy spoon cafes for breakfast. So it's time for some good food and plenty of veg from the garden! I am so relieved he is back and even if he doesn't get another summer job, he can do some voluntary work, have a break and a rest and move into his new home before the start of next term. He can help me out too, especially after my op.

So a good start to the day...

But late this afternoon, Laura had quite a bad seizure and we needed to give her paraldehyde and oxygen. It lasted upwards of 15 minutes from when we realised. She was in the lounge with Mick who was watching the golf. She was having a bit of a mardy session and had her head into the back of the chair and it took Mick a while to realise she wasn't just being mardy. She'd been told off and had only just come out of "Time Out" for pouring a cup of water on the floor (deliberately). She'd also refused to stop pulling all the flowers in the garden and so had just been brought in (unco-operatively) from outside. Actually she'd been rather "off" earlier as the Homecare workers had taken her to the park and they said how unhappy she was. She was very happy to come home though, although not impressed with the golf on TV.

So she slept off the paraldehyde and has just now woke up and has gone back into the lounge but has fallen asleep. She wasn't really too happy yesterday either. But I had put that down to this nasty rash on her bottom and the tummy bug. Yesterday I just gave her Diorolyte for her feeds and also two pots of probiotic yoghurt, none of her usual feeds. That seems to have helped settle her tummy as she didn't have any BMs yesterday and the one this morning was normal looking. But the cream from the doctors doesn't really seem to be helping the rash so I am trying metanium again.

The last thing I wanted to do was give her rectal paraldehyde (which melts plastic) when she has an iffy tummy and a nappy rash but I had to, so hopefully it won't have made it worse.

Anyway quite an eventful day, hopefully tomorrow won't be...

Tummy troubles

Laura didn't go to playscheme today - she has very bad nappy rash and is dirtying a lot of nappies so I am thinking she perhaps has another tummy upset or maybe the lest one didn;t clear up totally and has reared itself again.

The nappy rash was made worse because carers at playscheme appeared to only use one nappy on her the whole of yesterday and that was being changed when I arrived to pick her up! So not good. I had told them to change her frequently and to put plenty of cream on but it seems communication isn't all it should be there.

I was amazed yesterday when I went to pick her up and one of the staff asked me if Laura had seizures - I mean how come they don't know she has seizures???? The only reason she asked was because Laura had had one the previous day and she wondered if I'd been told. So I am really unhappy about that. They should all be aware of the kids' medical conditions and should record and report to parents all seizures. Obviously they didn't use her magnet as despite me telling one of them where it was on Monday, they hadn't even grasped that she had epilepsy and so wouldn't know to use her VNS magnet. I am going to have to have some strong words with Sarah on Monday. I don't like to complain about the playscheme but I think this is important enough to warrant it.

So today she stayed at home as I wanted to keep on top of the rash and her nappies. I rang the GP this morning and got some fungal/steroid cream as I think it's more than just nappy rash. Dad kindly came over to Laura-sit whilst I went to pick up the cream as it's easier not to have to drag her out to the doctors and the chemist. Hopefully the rash will clear up over the weekend and her tummy upset too. Actually she's been fine today, one dirty nappy this morning but none since. She was arching her back and writhing a bit after her feed this morning so I am pretty sure something gastro is going on. I am going to try her on probiotic drinks (Yakult) for a few days too as the dietician said they help some children. So fingers crossed she is better for Monday.

Hospital reviews

We had a busy day yesterday as Laura had two hospital appointments in the afternoon. First we saw Orthotics who agreed to get her some piedros as apparently the glue problem has been resolved. There were some new styles to choose from too and some extra high ankle boots which are really girly, so we chose those. Hopefully they will prevemt the toe walking and give her more stability.

Then we saw the epilepsy nurse, although we had a 3/4 hour wait between appointments and Laura was not happy. In fact she was not happy to be at the hospital at all and I had a massive battle to get her from her car seat to wheelchair. I can't wait for the WAV to arrive abnd we won't have that struggle again.

Anyway the epilepsy nurse could see I'd got my hands full and asked about respite which is not too bad over the summer (thank goodness!). She will ask Dr Jay about the blood clotting tests so we can get it done before we see him in mid August. She increased Laura's VNS, so hopefully that will improve her sz control and jumpiness. I hope it will improve her mood too!!

She wasn't particularly keen to be going to the playscheme today but I'm sure she'll enjoy it when she gets used to it. She is really only happy in front of the TV watching her DVDs at the moment but that is no life is it.

Playscheme starts

Laura's first day at the Birkett House playscheme went well. She was not that keen this morning, holding her hands over her eyes walking out of the house to the car and got very distressed when I decided to try an alternative route to avoid the centre of Leicester, so tomorrow it's back to the normal busy route.

It's taking me at least 45 minutes each way, so that's 3 hours a day spent driving to and from Wigston. For the past few years we've used Fred + an escort but it is very expensive and so we decided to do it ourselves this year. We were going to split it but I've negotiated that Mick cooks all the dinners and I do the driving, suits me!!

Tomorrow will be a shorter day as Laura has orthotics and epilepsy nurse appointments at LRI in the afternoon.

Laura was quiet over the weekend just wanting to lay down and watch TV and pick at her skin which is a bit of a problem at the moment.

She had a 3 minutes sz on Saturday at 6pm just before her bath. So maybe it isn't the bath or the temperature change after a bath but the time of day that is a trigger for these bathtime szs. She wasn't undressed but was laying down on the floor which is a usual position for these szs. I'm really not sure what the trigger is. Anyway we abandoned the bath and I put her to bed for a sleep. She did wake up later for a feed and her meds, and slept in until 8am the next morning, which is very late for Laura. She was a bit perkier yesterday.

I'm pleased she has a lot of playscheme this year as if she was at home all she'd want to do would be watch her DVDs!

School's out for summer!!

Last day of school today, hooray! I didn't go in to school as it's not one of my working days and last night I was out with the rest of the staff for Sam's leaving do. Laura of course woke up with the skylarks this morning (5.30am!) just when I fancied a little lie in until 6.30. So I am on autopilot right now as I've had two late nights this week and I am definitely too old for that!

Laura is at the Birkett House playscheme for the next 2 weeks. I have to take and fetch her though and that's a big pain as it's about 14 miles away, across the city centre. I am going to try and experiment with some alternative routes this year as it seems to take me 45-50 minutes each way which significantly cuts down the time I gain from it. Then the third and fourth weeks she is at the Rainbows playscheme on the Monday, Tuesday and Wednesday, and as that is so much closer, it's better. I'm hoping she enjoys the playschemes. I'm going to be busy packing!!

Laura is really covered in bruises at the moment. She has two particularly nasty ones that school say she came in with from Glenfield on Monday. She is getting lots at school too and today came home with fresh grazes to both knees and both elbows, apparently from playtime. I don't think a concrete playground is ideal for SN kids. It's hard as I don't want to coop her up or restrict her to her wheelchair but I am concerned about all her bruises and scrapes. We have an appointment with the epilepsy nurse on Tuesday and then with Dr Jay in about a month. I am going to ask Berni for a repeat blood test to see what her fibrinogen levels are like. I really don't see any improvement since taking her off Epilim so maybe it's an underlying problem not caused by the epilepsy meds. Her gums are bleeding more now too so she is definitely not clotting properly and this morning I noticed some of the small purple bruises on the top of one of her feet. I can't remember what these are called but they are part of the clotting problem. TBH the bruising and her stumbling as she walks cause me more distress than the seizures. But bless her she seems to feel no pain but in a way that makes it harder as she doesn't learn to slow down and take more care.

Laura yanked her button out!

Laura's school nurse rang me on my mobile at lunch today to say that Laura had pulled out her Mic-Key feeding button. I'd been told that this is an emergency to get a new one in ASAP as the hole seals up very quickly. Mick and I had had gone out for lunch to Rothley chip shop and had literally just arrived - goodness knows what the poor woman thought as we left in a hurry and she was nowhere to be seen, so we just went!

So I had to collect Laura from school and rush down to the LRI. Of course there were no disabled spaces and so I had to queue for the main car park. I decided to go straight up to the day care ward as I know that is where they keep the spare buttons but unfortunaely it was very busy and we waited for about 40 minutes before I reminded them we were there and that a new button needed to be put in quickly. So they saw us next but the hole was miniscule by this time and we really doubted they'd get another one in, but thankfully a very skilled nurse managed it.

So that is our exciting day today! I was working his morning, so have not had time to recovered from my late night last night. Fingers crossed Laura is sleepy tonight!

Mamma Mia!

I've just had a lovely evening out with Suzanne and some of the Rainbows' mums to see a special charity viewing of Mamma Mia! It was hilarious and a really good evening out, much enjoyed by us all.

I came home to Laura sound asleep tucked up in bed, which was nice too. She's been on a school trip today to Sutton Park in Sutton Coldfield so quite a trek for her and she's clearly exhausted!

Wheelchair assessment

Laura had a wheelchair assessment/review today. The rep had brought the 14" Convaid Safari Tilt and it was definitely better than her existing 12" chair. It has a moulded seat which is much better too and I pushed for a head rest too as when Laura has a seziure or wants to sleep it is more comfortable for her than with her head flopping around. The OT wasn't inclined to let us have a sunshade but I pushed for it due to the photosensitive epilepsy and I think she will have to let us as we got one with the last chair. We got to pick a colour, although they wouldn't let us have a pink (kinda discriminatory as they made us have a blue one last time!) but I opted for the purple as it's a little more girly than the other options (green, red, blue, etc). They hope it will be here in about 4-8 weeks time depending on whether it has to be imported or if the supplier has one in stock.

I then took Laura up to Glenfield. She was briefly reluctant but was very keen once we got inside and went straight for the boxes of toys and found one with a variety of different balls. She was happily playing with these for ages whilst I checked in her meds. She was very good at collecting the balls up and putting them back in the box. It was quite funny as I could have just jumped to the conculsion that they had her well trained in tidying up but actually when I observed her more it was quite clear that she was keeping tabs on the balls as one of the boys there (the other three residents were all quite big boys of about 14-16) was quite keen to help her play with them!!! She wasn't having any of that and thought nothing of going up to him and snatching the ball back. Although she let him go after the first one, as that meant that he got up out of the pink bean bag bed and she plonked herself straight down on it - as Alex says, she is quite cute and not nearly as green as she is cabbage looking! He's convinced that she is just scamming her learning disability to get out of doing schoolwork and homework! I wish! Anyway, it is good that she has to share things at Glenfield or at least be aware of other kids there.

Tomorrow I'm off to London for a get-together with about 7 or 8 other Dravet mums (and one dad!). We're meeting in Starbucks and then going for a picnic on Regents Park or if the weather is iffy we'll find a good pub that is open all day! Most of the other mums have younger kids, a few of them are new to the group and have 1-2 year olds, so it will be all new to them and I'm sure they will have lots of questions. Three or four of them are off to the conference in Chicago next month so will be doing some shopping down there too, but I'm just after a lazy day!

Laura is at Glenfield until Monday so will go straight to school from there. I have sports day on Monday afternoon so fingers crossed the weather holds for that!

What a mess!

For the last two mornings Laura has been sick, yesterday it was terrible as she'd just had about 350ml of fluids, feed and meds and it all came up over me, over her and over the lounge! Not a good start to the day. So Mick took her to be bathed and I set to cleaning the mess up. She seemed fine in herslef so we sent her in to school. I've decided to use her pump to give the morning and evening feeds from now on. It puts the feed through more slowly but does require her to be strapped into her buggy which she doesn't like when inside the house. I did it this morning and all was fine, so that is the plan from now on.

We went round to look at the new house again yesterday and as look would have it the next door neighbour came home soon after we arrived so she invited us round to her back garden to see what she has planned. TBH it isn't going to affect us much as the lorries etc will access the plot via the railway apparently and we won't be able to see the houses except maybe from the highest part of our garden at the back. There are a couple of aspects I raised with the neighbour, like a triangular piece of land that borders ours and she offered to look into putting a covenant on it to prevent any high summer houses/log cabins!! Also there is an existing fence that will be partly replaced by a 6 foot high wall and I have suggested it all be replaced with the wall as this will look better from our back garden and apparently the wind does tend to blow the fence rather.

I saw A (who lives on the other side) this morning and chatted to her about it. She and her husband are not too pleased, understandably as they will be able to see at least one of the houses from their back garden. She is really upset because the owner lied to her about what she had planned and A has given her a lot of help and support in the past few years whilst she has been ill.

Our main concern is that the cul-de-sac of 5 houses will become 8 houses as Peter on the other side of us has already sold the bottom third of his garden and a "cottage" is nearing completion. It is not a cottage at all but a very large dormer bungalow, probably having about 5 bedrooms I would think. Again it doesn't impact us greatly as it is at the back of the far side of the plot, although I noticed yesterday that a large tree that was obscuring it has been removed. I think we shall put a large summer house up there and move the smaller one that is there to the other side where it can be a play house for Laura.

A better day

Laura seems much better today. I slept in with her last night and put her seizure monitor on and all was fine, except I had rather an uncomfortable night - in future I need to remember to use two futons not one!

So this morning I stayed at home with Laura and then Mick took over at lunch time so I could get into work for a meeting with the Head and then staff meeting after school. The kids were a bit upset to see me in school but not have me in the class but they always struggle with that. Tomorrow will be an even bigger struggle as there is a supply teacher for me and then the three candidates for the new job (my job share partner) are going to teach a short lesson in the morning. The poor kids will really not know what is going on.

Anyway Laura should be fine for school tomorrow. She has had a normal nappy this morning and no seizures, although she is a bit jumpy still.

On Wednesday we're going to go round and see the new house. We got rather a surprise today to hear (via someone in the pub!) that the owner of number 5 has submitted plans for two new houses in their back garden. This house borders onto ours but is quite a long way set back beyond the side of ours and so the only impact seems to be that their access drive will run along the border. Again I don't think it's a huge deal as our extension won't reach that far but all the same we really need to go and take a look. Mick finds it difficult visualising things from plans so definitely needs to see things for hiomself. Our sellers say they didn't know she'd submitted plans although had an incling she would do as she is very ill with leukaemia and cannot manage her huge garden which is probably 1/2 acre and plus they'd seen lots of architect-like people looking round over the past month or so. Anyway we'll see how it looks on Wednesday when we go round.

Exploding nappies and hospital trips

We've spent most of the day at the Walk-in centre and then at the Infirmary. Laura started having exploding green nappies on Friday but yesterday's was even worse.

She had two szs yesterday and was very subdued. This morning she woke with blood on her pillow suggesting another sz overnight. Then she had another exploding green nappy this morning so I decided to get her seen by a doctor.

Actually I was worried about a urine infection too as she had a bit of temp and seemed a bit uncomfortable after three exploding nappies whose contents had got everywhere. So we went to the Walk-in centre where she had a sz in the car park and then another shortly after getting inside, both tonic szs so quite scary. She was extremely jumpy in the emergency room and so the doc (who coincidently is our GP) decided to get her an ambulance to take her to LRI. She was fine in the ambulance and much more settled from then on. A good sleep certainly helped.

They watched her for a few hours at the hospital but things really did seem more settled and her urine sample was fine so we were given the all clear to head home. They would have happily let her stay on the ward for the night but we definietly didn't want that, especially with all those coughs and colds!

She's just had a feed and seems fine, although still quiet.

It looks as though I am going to have to take the day off work tomorrow though as Mick has a meeting at the Halifax regarding our mortgage on the new house. If she's still off school on Tuesday, Mick will have to stay at home with her as I am interviewing all day.

Haircut!!

OK I am not a hairdresser but have to resort to being one for Laura as there is no way we could get her to co-operate for a real hairdresser. So I have had a hack at her fringe as she it was beginning to cover her eyes. She looks happy enough anyway!

She was not herself this morning, very subdued and wanting to lie down with her fleece blanket whilst she waited for the school bus. I was convinced she was going to have a seizure and I was going to get a call from school but actually apart from being very tired and having some visual disturances, she has had a good day. Which is an improvement on the last two Fridays when she has had a seizure either on the horse or on the way to horse-riding. I was beginning to think there was a trigger with the horse-riding as I know she doesn't particularly enjoy it. But today she went riding with no problems, so hooray! Next Friday is her last riding lesson this year and so they are having some races and awards, so I will try and go and watch that.

My operation is going ahead for 28th August. Rainbows are having Laura for 8 nights so I won't have to worry about her whilst I am in hospital and the first few days I am home which is a huge relief. I've also spoken to our social worker and she is going to request home care for 1 hour in the morning and 1 hour in the evening to help get Laura up, changed and dressed, and fed. At the weekends I've asked for a little more during the day if that is possible, so fingers crossed. Glenfield will hopefully be able to schedule our respite for September and early October too and the social worker will request an extra slot for us in that 10 week period. So hopefully we will be able to manage.

The dietician has been this afternoon to show me how to use a feeding pump. This will make it easier to feed Laura when she is outside and also after my operation as it can be attached to her chair and she can be strapped in and fed rather than chasing her round the room as we do at the moment!

We weighed Laura and she only weighs 23.5kg, so the same as last October. She's grown about 10cm in the past year, so we are going to increase her feeds as she needs to put on some weight. Hopefully she'll tolerate the increase OK.

Operation

I have a date for my operation - 28th August - but I am going to ring the gynae's PS tomorrow and see if I can it have a week or two later as I think getting Laura into respite will be easier in September than in the school holidays. Rainbows have certainly indicated this but I will confirm with them when I go to check Laura's things in tomorrow as the date is very close to September.

Mick and I are off to Thornham in Norfolk for some beach walks with the dogs. We're away Thursday until Sunday and are really looking forward to it, although the weather forecast looks a little iffy on one or two days so I think I will take some good books too!

Must remember to ring Orthotics tomorrow and chase up the piedros. Goodness knows if they have ordered them or are still waiting for me to complain again. I haven't heard since I got the PT office to fax through the letter that orthotics claim to never have received. Mmmm.

More celery!

Laura is up to 1 packet of celery a day and would probably eat more if we let her! Strange child!

In the past couple of days I've noticed that she is weeing lots more than usual. At first I thought oh no, it's a return of a problem she had a few years ago which ended up with a dx of diabetus insipidus, although on the previous two occasions it went as swiftly as it came a few months later, so no lasting effects.

But now I wonder if the celery is to blame as when I googled "celery" and "excessive urination" it came up with info the indicates celery is quite an effective diuretic. So now we need to limit the celery a bit and see if that problem goes away. Interestingly she hasn't started to drink any more which is what happened when it arose previously and no sign of dry skin and lips so at least it's not as bad as previously. Watch this space! Always keeping me on my toes!

We're off to Norfolk on Thursday for three nights, staying at The Lifeboat, Thornham with the dogs, so hopefully the weather will be kind. Laura is off to Rainbows and Alex is holding the fort here.

Wheelchair review

I'm not sure if I mentioned our latest fight with the NHS...

Laura's wheelchair is getting too small. She's only had it a year and it cost about £1200 courtesy of the Wheelchair services at the hospital. It only just fitted her to start with as really they should have ordered the next size and because it took so long to arrive from the US, she had almost outgrown it. So a year later it is definitely getting too small and more importantly she is almost at the upper limit for safe transportation in the chair.

So in my naivety I wrote the wheelchair services centre to ask for a review. Wait a month and no reply, so I ring them and am told they hadn't received my letter (this happens all the time in the NHS, mmmm) but take my details over the phone and say they will be in touch regarding an appointment. A few days later I get a letter from them saying the wait is 26 weeks, yes 26 weeks, and they will let me know when I can contact them again to make an appointment - how kind of them!

So I decide to write back, sending it by Recorded Delivery and tell them this is totally unacceptable and if I don't get an earlier appointment I will be making a "formal complaint" and write to my MP. Both of these "threats" usually make things happen PDQ in the NHS. Formal complaints (and I have made a few of them) fill them with fear as they are very formal and get all sorts of highly qualified service managers out of their offices!!

Anyway, I was out to lunch with the SN mums today and got home to a message from the Lead manager from Wheelchair services. I call her back and she apologises profusely for the letter and the poor service they offered me and she asked if I would be able to make an available appointment (that they have just found, mmmm) on 4th July where she will see us personally and where a rep from the buggy suppliers will be there with the next size buggy!!!

So miraculously, 26 weeks' wait suddenly becomes 3 weeks' wait just because of my letter, mmmmm.

Works every time!!

Bahaviour

Laura's teacher reported at the annual review last week that Laura was much more compliant nowadays.

Of course as soon as you tell people how good everything is, sod's law comes into force and it all goes pear-shaped. So predictably Laura has been extremely lively, with lots of dropping and refusal behaviour this week at school. I'd already said last week that she was becoming more of a handful at home and that I was thinking of getting her Ritalin dose increased. So now that she is having problems at school too, I think I will speak to Dr Jay before the holidays and get it increased.

Laura's back has been more bruised this week, and her legs are badly bruised and grazed too. School say it is not just her new chair but she is launching herself across furniture and generally being a handful. She nearly fell off the bus as she bounded towards me. So something needs to be done for her own safety. The trouble is the dose goes up in large increments, so we will likely see a big change before she settles into the new dose.

House update

We had a survey on our house today. Mick had said they will be here between 9 and 11, to which we both assumed meant at some point between 9 and 11. But at the stroke of 9, just as I was finishing off the hoovering, the bell rang and the surveyor arrived. He quickly informed me that he would be here for at least 2 hours!!!! So Mick had a very long walk around Bradgate with the dogs, and when he got back at 11, the surveyor was still here. He went at about 11.45!!!

He said he was struggling to find anything negative but did find a few little things, like sticking doors (thanks to Laura banging them!) and dripping guttering in a couple of places. I think the valuation was OK, so hopefully nothing that will put our buyers off.

Anyway have to press on with a survey on the one we're buying. I don't think we'll go for the big expensive one as they do cost a few thousand and as we will be doing lots of building work, we'll deal with anything that arises.

The plan is to move on 20-21 August, fingers crossed!

Heart problems

There are a lot of symptoms of Dravet syndrome that are undocumented, probably because it is a relatively new condition only being identified and named in the 1980s, but also because there is so little research into it because it is so rare.

Our support group and charity, The IDEA League, set up and run by parents for parents (and professionals) has discovered many symptoms or co-morbid conditions of Dravet syndrome. These include:

- skeletal problems like ankle pronation and scoliosis of the spine that often occur from age 8 onwards and into puberty;
- poor growth and nutrition resulting in the need for gastrostomies in many children;
- behavioural problems including autism and ADHD; and
- immune weaknesses and deficiencies, often it seems IgA but sometimes others.

The most recent problem that has come to light, and perhaps the most worrying, is heart problems. A few of the children have been found to have heart arrhythmias and this was named as the reason for Scott's death last week.

The problem is, what to do? Do you demand to see a cardiologist when there is no written evidence to support it. We already see an orthopaedic surgeon once a year to check for ankle pronation and scoliosis, should we ask to see a cardiologist to check Laura's heart? Would they just think we are being extremely anxious parents and scaremongering. But what if something happened and we hadn't asked for it to be invesigated?

Hopefully these co-morbid conditions will soon be documented so that our kids can be regularly screened for these conditions. Meanwhile I think I will ask Dr Jay when we see him in the summer holidays.

Sad news

We got some sad news this morning.

One of the children on our Dravet support group, 8 year old Scott from USA, died from suspected SUDEP yesterday afternoon. He was a happy boy, always smiling and looked so full of life in the photos his dad posted on our website. I don't know any details but we had not heard he was particularly poorly or having a rough time with seizures (well no more than usual) and so it must have been very sudden just as it has been for many of the other Dravet children who have died from SUDEP.

Scott is the 10 th child on our Dravet group to die in recent years. My thoughts and prayers are with his parents and whole family. I don't think he had siblings so this will be all the more devastating for his parents.

We, the parents of Dravet kids, know the mortality rate for this catastrophic syndrome but we never think our child will be one of the statistics. I am sure we will all give them an extra hug today.

Scott and our other precious Dravet angels: Tessa, Eileen, Tyler, Adrian, Nathan, Kevin, Charlotte, Amelie and Brianna, are all free of seizures and at peace from their daily struggles. I think this is the only consolation for their grieving families.

God Bless them all.

Annual review

Today we had Laura's annual review and service co-ordination meeting. It was very well attended and very positive. School are pleased with her progress this year, saying that she has been much more focused and motivated since starting on Concerta/Ritalin. They still have some times when she drops but far far fewer than before. Her new school chair, (or throne as we refer to it because of its resemblance to one and how she sits in it and lords it over the class!!) is being modified or maybe even changed. I wasn't too sure which, but I think she is still skooting a bit in it and it needs a lot more padding as her back is getting badly bruised in it. I will be interested to see what happens with it as we still need one at home.

Glenfield reported that she has settled wonderfully, seems happy to be there and is getting to know many of the staff members. They appear to have no problems with her at all, which is great news.

It was good to hear so many good reports!

I shared with everyone the news on my hysterectomy operation in August/September as I thought that this was a good opportunity to start the ball rolling on getting support for Laura after the op. Everyone committed to give us extra respite during this time which was good to hear as I won't be able to bend, lift or drive for 6 weeks after the operation. I am going to ask Rainbows if they will have Laura for the duration of my hospital stay (about 5 days) and we will hopefully manage with getting help before and after school from Home Care and some extra nights at Glenfield. The weekends will be the hardest and I am thinking of asking Sophie if she will help out filling in the gaps, on a paid basis of course, as it should be a few weeks before she goes back to Cambridge Uni. So fingers crossed things are starting to fall into place.

Of course we have the house move happening at that time too! Actually I had totally forgotten about that when I asked for this date at the hospital on Monday. But as Mick says, you cannot schedule things round a house move as it may all fall apart still and in any case it wouldn't be a bad thing if it did happen at around the same time as we would ahve the extra childcare/respite for Laura. The ideal of course would be for it all to happen the day I go into hospital!!! Leaving it all to Mick, or perhaps not such a great idea as he may forget something crucial, like moving the chickens!!!

So a good day, finished off by a brisk 1 hour walk across Bradgate park as part of my weight-loss camapign!

Celery!

Laura pushed her feed away and asked for celery for lunch!! This is great although somewhat restrictive as she is only eating celery. Mind you she did have 6 pieces and almost finished the whole pack that Mick bought this morning!

Cyprus!

We got back from Cyprus yesterday. The weather was very good, a little too hot the last couple of days but a lovely sea breeze.

Unfortunately Laura was poorly for the first 3 or 4 days. She was bit quiet before we left but deteriorated on the plane and was very sick that night. She remained under the weather for a few days, being very reluctant to get out of bed. Later in the week she did improve and managed to get into the pool most days and play in the playground.

Salad days!!

Laura is at Glenfield for the weekend. I've just rung to see what sort of day she's had and they said she has been eating salad for tea!! She actually took a chip from another child's plate and screwed it up in her hand so they gave her some celery to play with. After a bit of playing she started to eat some!!! They then gave her some crunchy lettuce, tomatoes and strawberries and she ate some of them too! Mind you, they said she was wearing quite a lot of them but plenty went into her mouth, so that is great news!!

Aparently she was due a feed so was probably hungry so I will have to try her on some solid food before she has her liquid feed and see if she will eat a bit at home too. Glenfield are sending her to school tomorrow with some celery and a note to see if she eats some at school.

I will have to pack a tub of salad items for on the plane journey on Wednesday, and a very big bib too!!!

Better now

Laura seems fine now. She hasn't had any visible signs of illness but I think she had a sore throat as she was reluctant to swallow at the weekend. A few doses of nurofen seemed to help and she was a little subdued for a day or two but is OK now.

The weather has cooled a bit now which is probably a good thing for Laura but I do prefer the warm sunny weather!

I can't believe it's only a week until we go away! There is so much to do just to go away for a week with Laura. I've had to get letters from our dietician and neurology nurse to cover the bottles of liquid feeds and the liquid meds as of course there are restrictions on liquids on board flights. I've rung the special needs department at Thomson twice and now have to ring a third time to get extra baggage allowance for Laura's feeds. We may not need it but it's best to have it just in case.

Laura's at Glenfield for respite this weekend. It's a shame it's come so soon after Rainbows but good timing for our trip next week. I can get everything packed over the weekend as I'll be working Monday and Tuesday and then we go on Wednesday. Laura probably won't be too happy at being away from home again as she is very attached to her DVDs at the moment and has to share the TV at Glenfield unless she goes into her bedroom. At Glenfield they do tend to take them out a lot at the weekend and are sure to this weekend as they have a parents' gardening session planned. I will try and pop over with some plants on Friday or Saturday. It's good for Laura to get out and about but she probably won't see it that way!!

Under the weather

Laura's been under the weather today. She had two seizures yesterday, one at school in the afternoon (2-3 minutes) and a shorter one at home in the evening. She had a slight temp later in the evening although it seemed to settle and she slept through until 6am.

This morning she seemed OK at first but then vomited up her entire feed (300ml of milky liquid - YUK) all over herself and her armchair. It looks as though she has a sore throat as she is reluctant to swallow any water or even her saliva. So I have been giving her nurofen all day and that seems to help.

Laura had a good stay at Rainbows although ended up in the cube bed after the first night when she was found on the window sill!! She enjoyed playing in the paddling pool whilst there and had swimming at school on Wednesday and Thursday.

The weather has been lovely this week, very sunny, in the mid 20s, so I think the heat may have affected Laura as the carers at Rainbows said she was very tired at the end of each day.

Sunshine!

It's a Bank Holiday today so, as usual, it was dull and drizzly for most of the day, but then at 4pm, the sunshine finally arrived, so I insisted that Laura leave her Fimbles DVDs and go into the garden.

She was reluctant at first, but once outside was quite keen which is unusual at the moment as she rarely goes outside in the garden any more.

I had to divert her from picking the flowers and leaves off plants and bushes, although I didn't mind when she discovered the dandelions in the lawn!

As usual she made a bee-line for water, testing the watering can and then later heading off up to the trays alongside the greenhouse, where she knows water collects. Just look at how happy she was.

Sold!

Well we've had four people look around the house and the first ones who viewed it have bought it! They increased their first offer by £10k and so we've accepted it. It's £15k below asking price but reasonable for a quick sale. Thank goodness we'll haveno more people to show round here!

Rainbows rang yesterday to offer Laura three extra night next week which is brilliant! We're lucky that we are so close by and because Laura can go to school she doesn't need as much care as some kids. Things have been pretty frantic and stressed here the last couple of weeks with getting the house shipshape, so it will be nice to have some extra respite.

Laura's had no seizures since school on Monday. We're having problems with her crunching and chewing her Ritalin capsule which is supposed to be swallowed whole. School have said she has been "lively and determined" the last three days, so no doubt that is the knock-on effect of that. I'm not sure how to stop her chewing it as it's too big to put down her tube.

Baths

Seizures in baths is an unfortunate feature of Dravet syndrome, although Laura has only rarely had them in the bath itself. But for a long time I have noticed that she has eye blinks/flutters immediately after a bath whilst laying on the bathmat and being dried. She also has had bigger seizures at this time too, including last night.

I think it must be to do with the sudden change of temperature. Unfortunately Laura's bathroom doesn't ever get warm and is often pretty cool. It's at the end of the heating pipework and the towel holder never gets very warm let alone hot. Plus it is attached to the garage and also has an outside wall, so probably loses what ever heat there is quite quickly. We did have underfloor heating put in when we had it built but with a bathroom the floor space is small and so it doesn't have much effect.

So I'm thinking too that when we move, we will put in a wet room for Laura rather than a bathroom, although Laura will miss the bath tub I am sure. She is having more difficulties getting in and out of the bath too and so that is another reason for changing to a shower.

Strangely last night she got up soon after the seizure and walked unsteadily into the lounge and sat down for half an hour. She then took herself off to bed. She was very restless in her sleep and I was rather worried when she didn't get up this morning. It was one of those days when I enter her bedroom with dread. Thanks be to God she was sleeping soundly, although was back to front in her bed with the covers on the floor. I probably should have slept in with her. When we move our bedroom will be next to hers and so monitoring her will be easier.

House update

We put an offer in on the house we want and it was accepted, so we are thrilled!!! We offered the asking price as there were about 4 cash buyers in the running for it with second viewings and architects lined up, and one offer under the asking price already. But the agents told us that the vendors wanted us to have it, so even though they could probably have gone to "best and final offers" and got more for it, they accepted our offer! YIPPEE!!

So we just have to sell ours now! The agents valued it at what Mick expected but on reflection we've decided to put it up for less as we don't think it's a realistic price in today's market, and we would ideally like a quick sale. So it should be in the local paper next week. It's going to be really hard keeping it tidy and so we will have to be careful about when we accept viewings, ideally Laura will be at school although it's probable that most people will want weekends, so we will have to offer something then.

Laura has been pretty good the past week. She had a short 40 second seizure in music therapy on Monday and one on Wednesday night. Thankfully Laura's school was shut yesterday for the NUT strike and so she was at home and able to have a lie-in. A major challenge at the moment is that she is picking at any grazes, cuts or spots and making her skin sore and often they bleed. This is a problem for Luara as she has low fibrinogen in her blood, which reduces her clotting and so she bleeds a lot. So I am having to put her in tights overnight under her sleep suit as she has a sore on the side of her foot which she just won't leave alone. It's a sort of OCD compulsion I think as a lot of Dravet kids have these issues.

I've been in the garden again today, planting up my pots and baskets to make the outside of the house look more attractive. The garden is looking pretty with forget-me-nots, tulips, narcissi and magnolia still out. Soon it will be the turn of the Rhodies which is particularly spectacular, so hopefully we'll impress viewers with that.

Physio review

Laura had her annual physio review on Monday. In an ideal world we would have more regular reviews than once a year, but that's all we are allocated, so it's always important to make it to the review. This year it was on a working day for me but luckily the appointment fitted into my lunch hour and Laura's school is only about 7 minutes drive from my school, so I was able to attend.

Laura has been in her new orthotic boots for a couple of weeks now. They are very pretty patent boots but are not really supportive enough for Laura. When we went for the orthotics review the technician said that they had stopped providing piedro boots as "they were falling apart". Mmmm, I did say that I had never had this happen and that I felt they were much more sturdy and supportive than the Duna boots they provide now. He said, "No, the Duna boots are just as supportive". But I felt he was wrong and suspected it had more to do with cost than anything as I know the piedros are about £100 a pair.

Anyway we saw the physio and she also felt the Duna boots were offering no support for Laura and allowed her to toe walk all the time. She also said they would not last very long as already were badly creased across the front. I relayed what the technician in orthotics had said, and she too felt it was probably down to finances.

So she is going to write to them and tell them that Laura needs piedros. She advised me to make an appointment in the next week or as soon as I got a copy of her letter, as she said if there is still a long waiting list, the Duna's may not last that long!

So far from saving money they have wasted money on these boots and also have made Laura's walking worse by allowing her to toe walk 24/7. Grrrrr!

On the positive side, the physiotherapist saw no evidence of any scoliosis and felt that Laura's achilles tendons were slightly tight but OK. Hopefully getting her back in piedros will help prevent this getting worse as Laura has been in Duna's for almost a year now as her last pair were Duna boots too.