The simple things

Laura has at last been back out into the back garden.

She spent over an hour just playing with blades of grass, pulling leaves off trees and trying to post them over the tall fence, and picking up twigs off the lawn.

It's cooler than the past few days and there's a bit of a breeze which she likes. No expensive toys needed for Laura, just nature!

Constipation

Laura is still very constipated despite drinking gallons of water every day. Her lips and skin show signs of dehydration too. Both most likely due to Topamax, one of her epilepsy meds. So after having no improvement to Benefiber and Lactulose, we've reduced her Topamax again. Fingers crossed it works, although we do have a further plan, Movicol and Lactulose together.

I think part of her behaviour (screeching) is down to the constipation as today she had a BM (it usually happens once a week on a Saturday morning) and has been much happier since then.

We're having a fight with a local SN out-of-school provision as they've refused to allow Laura to attend their playscheme, Saturday club and after school club due to her medical needs. I'm pretty angry as they sat on her application for almost a year saying they were waiting for a place to become available and now they are using a variety of excuses to exclude her from going. Zoe at the hospice and the deputy head at her school are looking into it for me. Grrrrr.

The house is slowing coming on with most big jobs fnished and mainly niggly things left to sort out. There are still boxes to unpack but that's mainly due to Alex losing his study and there not being room in mine to store all his stuff. He's finished his 2nd year at Uni and is heading off to Milan for a week's holiday in a fortnight. Then he'll be back here for the summer and will be working on some projects at the Kennels. I'll be good to have him around again.

My walled vegetable garden is coming on nicely with sweetcorn, onions, squash, courgettes, runner beans, french beans, fennel, raspberries, strawberries and rhubarb, not to mention, tomatoes, peppers and cucumbers in the greenhouse! Lots of help in the garden from Dad and Helen.

I've just finished putting some pond plants in the newly cleaned pond. Next week I'll get some fish. There are a few frogs and news in there but goldfish would be nice.

We managed to persuade Laura on the front patio last weekend when the Diana nurses were here. She was VERY reluctant and sat in her wheelchair, determined not to move from in front of the Tweenies. But I strapped her in and wheeled her out, much to her disgust!! With bubbles being blown and a bowl of soapy water in front of her, she soon came round and thoroughly enjoyed it. I got some good photos but can't upload them as I'm using Mick's laptop until I get Broadband connection back on my computer.

Bed

Laura keeps taking herself off to bed today. Not sure what's wrong as she doesn't seem unwell. She is severely constipated at the moment and she did do a BM this morning when lying down in bed, so maybe it helps with that.

She got up at 5am yesterday and went to bed early last night, so is perhaps catching up on sleep. She certainly has dark rings under her eyes at the moment so it won't hurt having extra zzzzs... as long as she sleeps tonight!

It has actually been helpful in getting things done as I've not had to shadow her as I usually have to do at the weekend.

We've moved!

We've been in the new house for almost 2 weeks now. It's going well although we still have the builders here doing the bathroom upstairs and still have one or two other jobs to be finished. Laura settled very well although at times has been VERY loud and is also a bit clingy too. The layout works well and we are being strict with only allowing Laura cups of water when she is sitting in her chair having her feed.

We don't have TV points downstairs yet so I am getting serious withdrawal from the soaps! Hopefully aerial man will be here to sort it soon. Also don't have extra phone extensions to run my computer off so I'm using Mick's laptop and dongle connection.

I may be gone some time...

We're moving tomorrow and so I may not get on for a while. We have to sort out phone lines and internet access at the new house and it hasn't been a priority up till now.

Today we managed to actually unpack some boxes. Helen came round to see the new house and ended up spending the day helping me! (THANKS!!) It's that bad she's coming back tomorrow!! Clearly it doesn't look habitable yet!

It's all carpeted so a big job today was getting the vacuum cleaners into action as there were little tufts of wool everywhere. We've more or less got Laura's room done, well not the bed as that isn't taken apart yet, but everything else. We made a start on the study, well mostly Helen did, as I got roped ino sorting out the latest problem with the kitchen units. At various stages we have taken back unwanted kitchen units/parts and ordered new units/parts. This has happend 3 or 4 times so far - perhaps it would have been a good idea to get the B&Q kitchen designer to do a survey but no we cut corners in our haste to order the kitchen over Christmas. So we are paying for it now. Mind you, part of the problem is that our main "builder" is not very organised or methodical and he frequently "loses" boxes and then finds them again days or weeks later, after I have reordered more. Thank goodness B&Q have a 90 day return policy as we have needed it! So we more or less have a kitchen, maybe a couple of doors and drawers to be bought but I'm not too worried about that as the kitchen will be useable.

Most rooms are painted, just the main living room, hall/stairs and landing, and Alex's lilac room (!!!) to be done now. He'll only have to be in touch with his feminie side for one night as will be back at uni on Sunday. The other rooms can be started on next week.

So where has Laura been??? Respite rang on Tuesday and asked if we'd like her to stay a few extra days to relieve our stress a bit. Thank you God! Wonderful news! It has made all the difference having days freed up to sort the new house out. Laura has been happier too as she was bored being stuck at home whilst I packed boxes.

Mito disorders

I found some interesting research just published which suggests a link between Dravet syndrome and mitichondrial disorders. It was Finnish research showing a case of a Dravet child with an SCN1A mutation who also had a POLG1 mutation which is associated with mito disorders.

There are a number of children on our group who have been found to have mito disorders as well as Dravet syndrome. It is hard to say what the likely incidence is as most Dravet kids have not been tested for mito, mainly because it involves doing a muscle biopsy which is not an easy or pleasant test to have to undergo. It doesn't seem surprising that there may be an association between Dravet and mito though, as it seems unlikely that all the issues that Dravet kids are faced with are due to the SCN1A mutation.

The research suggests that Dravet patienst are tested for POLG1 mutations/deletions especially if they are on valproate because of the associaton of both POLG1 abd valproate with the liver.

Sad news at Easter

Another child on our Dravet support group died this morning. She was nearly 6. I don't know any details but in all probability it will have been a nocturnal seizure as this seems to be the pattern with Dravet syndrome. It is especially sad to lose your child at a special time like Easter or Christmas as a time of joy will forever be associated with sadness. She was a beautiful girl and now a special angel. I lit my special candle for her this morning.

Tired

Laura's seemed very tired today. I had to wake her at 7.30 as I needed to start her feeding pump before the respite carer came at 8 to get her washed and dressed. It was nice having a bit of a lie in!

The Diana carers came for 6 hours today and they said she was very sleepy. They took her around the village for a walk which she seemed to enjoy although they took her in the other direction and this threw her a bit! She's enjoyed a long bath but her eyes are quite red and she looks quite pale. But because she is lying in so late she is not going to bed much before 9 at the moment, which doesn't help.

I picked up three clothes rails c/o Freecycle today and have another in Wymeswold that I will pick up in the week. I don't think I'll need the ones that are a bit further afield. I've got more of Laura's old toys on Freecycle this week. She'll have less room at the new house as there's no playroom as such. Some she's physically outgrown (like her playkitchen) and others she's never taken to (like her dolls, cots etc), so I've decided to get them new homes.

I spent a couple of hours at the house cleaning the kitchen and utility worksurfaces and the bathroom/toilet. The builders are slobs and so I've left them a list of rules and will be checking them every day from now on! Actually it's only one of them that's the main culprit and he's not there tomorrow, so will I speak to Jez and get him to talk to him too.

There's a lot of general clearing up to be done, loading the skip etc. Alex says he's too busy with revision, so I'll have to ask Jez tomorrow if there's anyone else we can call on. Both Dominic and Michael have helped out with this from time to time, although some of the stuff out back is a 1-2 man job and they're really just kids. I know Mick is reluctant to pay the builders for doing labouring but it's hard with so much rubble and muck around the place, inside and out.

I nipped to Wyevale in between picking up rails today. It was sooooo busy. I decided to get some spring plants for some planters to put on the patio, although things need clearing out the way first so I will keep them here for the time being. There are old doors, windows, bikes and all sorts of clobber cluttering the outside of the house. Maybe I need to speak to Jim and see what is going and what can be skipped.

Much better today

I woke Laura at 7 this morning when the carer arrived to help wash and dress her. She looked a little less puffy-eyed than when she woke yesterday and she's been much more herself. No sleeping, lots of shouting and even some water filling and pouring!

Mick went off to St Andrew's at the crack of dawn this morning. I was a bit surprised he went considering all that is happening here but I suppose when it's a group trip it's not always possible cancelling without letting the group down, and I imagine they have to have an even number for the rounds of golf. Anyway it will do him good to have a break as he has been getting a bit stressed with all that is happening.

Our Diana carers cancelled today so we didn't get the 6 hours respite they'd promised, which was a shame but we've managed. Alex is in charge of dog walking, dishwashing and fetching things from the shops (although I did a big shop yesterday so we have most things till Mick is back).

I asked on Freecycle this morning for clothes rails and have had 6 offers which is great. I'm picking quite a few up tomorrow from the immediate area and have had other offers further afield (East Leake and Diseworth), should we need more. Alex and Laura have stand-alone wardrobes but ours here are built-in and so we need to get some sorted for the new house, but haven't finalised exactly what we want and can afford! Portable rails will tide us over.

Hillary's came out yesterday to measure and price up for blinds in the kitchen, study and Laura's room. I was quite surprised at how good value it was and so asked them to add vertical blinds for the study and with the extra discount they only added an extra £30 to the total bill. They could install on 15th but the carpet fitter and extra kitchen units arrive that day so we've decided to defer until the Wednesday after we move in although it occurs to me that that will leave Laura's without any window coverings for 2 nights. Privacy sn't a problem as her window is shielded by a tall fence but the light could be a problem. I may ring him and see if he can come on the Saturday or Monday instead.

Physio review

Laura sees a physiotherapist once a year and to be honest she's never really listened to my concerns or done much for Laura except order more piedro boots. Anyway her old physio has retired (hooray!) and so we have a new one. She came to Laura's school today to see her and she was brilliant.

She spent an hour with Laura, stripped her down to her nappy and watched her at length. This has never been done before. Mostly there's a cursory look at her walking and checking her piedro boots, that's it, 5-10 minutes and it's done.

We talked at length about the issues that many older Dravet kids have with ankle pronation and scoliosis, and I also told her about Laura's history of right sided seizures/left sided brain damage, and also prolonged Todd's paralysis (in 2006 she was paralysed down her right side for 4 days following a status sz and they thought she'd had a stroke).

Anyway, she can see a very definite right sided weakness that is manifesting in Laura's posture and walking. She agrees with me that Laura toe walks for stability not because of a sensory need/issue. She toe walks more on her right foot because of her weakness on that side. She also pronates on her right side when her feet are flat and her hips and trunk are twisted when she stands. Whilst she has no signs of scoliosis, she can see definite muscle weakness on the right side of her trunk from her shoulders down to her hips. When she walks she can see irregular movement from her hips and knees, probably due to the weakness.

She is writing to the orthopaedic surgeon who we also see annually (later this month coincidently) and is suggesting Laura has some baseline x-rays of her hips and spine. She also feels Laura needs more supportive seating. We have been asking our OT for a chair for home (mainly for when she has the feeding pump attached). The physio feels that the x:Panda hi low chair would be a good choice which is good as I liked the Panda Futura when I saw it at a recent exhibition and they are very similar.

She is also writing to wheelchair services about Laura's Convaid Cruiser Safari tilt stroller as she feels she needs some posture support in it.

Whilst this is not good news I feel so relieved that her needs are now being fully assessed and at last some of my concerns are being validated and properly investigated. I feel that because Laura is one of the more able physically at her school her PT needs often get overlooked.

Well enough for school

Laura didn't go on the bus but I did take her in at half past nine and she managed a whole day at school. She slept when she got home though and only woke in time for Mel coming to do her bath at 6 o'clock. She was a rather strange mottly colour in the bath which was a little alarming but she seemed OK in herself throwing bubbles out the bath as usual! Her gastrostomy is red though and I wonder if she has an infection there. I will ring the Diana nurses tomorrow and ask if they can swab it ver the weekend.

Laura took herself off to bed at 7.30, which is quite early for her and she fell asleep straight away. She is a little snuffly and a bit seizury (chewing and jerking) as she sleeps so she's not quite right.

As Laura managed to get to school, I managed to get up to the house today. The kitchen floor is almost tiled now, just the grouting to do, although it looks like we might need one or two extra tiles. The downstairs living room has had an undercoat and Laura's bedroom is being done today (pink of course!). I'm having peach in most rooms with some terracota in the hall, stairs and landing and pale green in the kitchen, utility and study. I went to homebase today, bought lights and curtain poles mainly, most quite discounted so that was good. But then when I got to the till, she told me that there was 15% off tomorrow and Satruday, but I don't have time to do it all over again tomorrow, so just took off one full price light and got the rest. I would have saved around £40 but have a full day tomorrow so wouldn't have time to shop all over again and the Diana carers have cancelled Saturday as they can't get two carers.

Tomorrow I have Hillary's coming about blinds for the kitchen and Laura's rooms and then have a physio review at Ashmount, oh and have to go to Parkside first thing to pick up more floor tiles, so not exactly a free day!

Very quiet

Laura has been very quiet most of the day. She shouts up every now and then when she wants a new DVD on but hasn't moved out of her armchair all day. No real temp today but I think she has a sore throat as she puts her hands in her mouth every now and then and coughs as though trying to clear her throat. She was a bit perkier first thing and I was even toying with taking her into school for 9.30 but by then she definitely wasn't up to it.

So my day trip to Ragdale with Helen was cancelled. Helen had her work colleagues so at least it didn't affect her too much.

I managed a 10 minute trip out to the kennels to check on Potters who were fitting the Rhinofloor in Laura's bathroom and Russ who is tiling the kitchen floor. Both look really good. Jez has started painting in the downstairs lounge so it's startin to look more finished than started now! On Friday I have Hillary's coming out to see about blinds in the kitchen and Laura's bedroom, and possibly also in her bathroom.

Am feeling pretty exhausted today and hope I don't catch Laura's bug whilst I burn the candle at both ends.

Benji still feeling sorry for himself. He was wimpering all night which kept me awake. I'm hoping he is more settled tonight. Alex is taking him back to the vets for a check up tomorrow but the stitches don't come out for another 11 days which may mean almost another 2 weeks with the horrible ruff.

Oh no!

It was one of those days. It started out like one, so I should have expected it to just get worse. Laura was quiet yesterday, and really quite quiet over the weekend. Despite the clock change she took herself off to bed relatively early yesterday and the night before. But each morning she was up by 5 so maybe she'd just got into a vicious circle with her sleep.

Anyway this morning she was very quiet. The carer commented on her last night and again this morning. Just before leaving for work, whilst waiting for Mick to get back from the kennels, I took her temperature. It was high, 38.3C. Her normal body temperature is low, around 35.7C, about a degree below the typical body temp. So this was 2.6 degrees above her normal.

Really I should have kept her at home and rung work, BUT I had plans to make fruit salads as the final task of our D&T topic. We started them yesterday and we had all the fruit ready. Plus we had a visit from the fire service and all the Easter things to do. So I went into work.

Not surprisingly at just after 10 Mick rang to say Ashmount had called him to say Laura's temp was 39.2C. That is VERY high for Laura. The bus escort had swiped her magnet 3 times on the way in and she was not quite "with it". So I had to leave school in the middle of the fire session and go and get her.

She has been quiet for the rest of the day, very subdued. she perked up a little when we bathed her but it was very hard getting her to the bathroom and into the bath.

I'm hoping she'll be OK during the night.

Anyway whilst that was going on, Benji went for a swim at the pool and managed to gash his hind leg getting out. I think he slipped somehow. Alex dashed him to the vets and he ended up being knocked out and stitched. It's about 3 inches long so not just a scratch. He is feeling VERY SORRY for himself, mainly because he has one of those Elizabethan collars on. He is wimpering and crying now. He may have to have it on for another 12 days till the stitches come out. Meanwhile we need to keep Rufus away from him at night as he'll be tempted to lick the wound and bite the stitches off! So Alex has taken him up the new house and Benji is all alone which he doesn't like at the best of times. He's high maintenance in that respect.

So not a great day. Poor Laura and Poor Benji!

Kidneys

Laura seems to have problems with epilepsy meds that are processed through the kidneys. I've mentioned this before here but recently she had a urine test to check for kidney stones/crystals. No stones but some particals, so her neurologist has referred her to a paeditric nephrologist to see if further action needs to be take.

We had already reduced her Topamax and the dehydration is less but is still a problem and she is constantly constipated due to lack of fluids. She passes fluids without a problem but I think it's more that her body expels fluids too quickly on these meds. Trouble is that Topamax and clobazam, the two meds she has problems with, are the best ones for her seizures.

Foxes :o(

Came down this morning to find the back garden strewn with chicken feathers. It appears that foxes got our three hens in the night. Very sad.

We haven't locked them in for well over a year, but obviously with the benefit of hindsight, we should have done. Cleared the garden and hen coop but will wait till we move to get more. There is a stable and large enclosure for them at the new house with a door that can easily be locked. As good as the eglu is, it is hard to shut the inner door due to the position of it in the garden.

3-4 weeks to go!

Things are moving along at a pace with the house move.

We have tenants organised for here. A very nice couple with a one year old baby girl. they're looking for a long term rental so that suits us too. We got our asking price so are really pleased about that too. They're moving in on 2nd May so that will give us a couple of weeks to finish clearing things out of here (we hope to move around 17th April) and clean carpets etc.

Been up to the new house twice today...

Tiling in Laura's bathroom finished and so the Rhinofloor can now be laid - must ring Potters and book that. Chasing up the feature radiator for the kitchen as that is now well overdue. Worksurfaces being installed tomorrow. Still waiting for some bits of units that had to be changed but they're not expected till mid April so will have to live with that. Ready for floor tiling next I think.

First fix electrics done in downstairs living room and plastering being done today. Bathrooms upstairs being ripped out (avocado circa 1981, lovely!!!). Hoping to pick up shower enclosures in B&Q clearance, but already got toilets, basins and tiles. Notr having baths in either bathroom as we rarely use them and will always have Laura's available if we want one.

Now at the stage of picking paint colours which is very exciting!!! Carpets finally sorted, we will have it all done the same colour.

Quiet yet busy!

It's been a quiet weekend for Laura since she got back from the hospice yesterday. She had a good time but was pleased to see me and to come home. Today she just wants to sit and watch TV and play with her toy robot! She did stay up till 9.30 last night, thrown by the fact that Mick wasn't here to turn off her Tweenies at 8 o'clock. I let her stay up later in the hope that she'd sleep in this morning but she was up again at 6.15! I don't think there is anything really wrong with her, although she still has the remains of her cough and is a little lethargic. We did have 20-30 minutes last night rolling the gym ball to each other across the kitchen floor which was good fun and good concentration for her.

It's been quite busy for me here and I barely have time to sort out schoolwork for this coming week. Yesterday I was up at the kennels sorting out carpets (again!!) and then again this morning to measure upstairs rooms. We've decided to get rid of all the built-in wardrobes as they were all circa 1981 and very dated. Also we've opted to use the front bedroom as the master bedroom and the back bedroom as a dressing room. This makes sense as the dog noise is at the back of the house. So we are blocking in the landing access to the bedroom and accessing it via the dressing room as this gives us the wall space for our bed. Hopefully it will work better. Both upstairs bathrooms need total gutting too but I knew that and have already got all the tiles and bathroom suites, but still need to sort showers. B&Q have half price shower enclosures this week, so we'll make use of that offer.

Alex's bedroom isn't as large as his current one and he will have to share the downstairs study but at the end of the day he's not there much.

Mick spent last night up there and will be there again tonight. Alex is going to do some shifts too and Rod one or two a week.

Only 4 weeks to go!!

A mixed day

The Parents' group at the hospice met this morning and we had a talk from the hospice bereavement worker and the palliative care nurse. Although it's hard to think about this topic, it is the best place to discuss it and get questions answered. Whilst nobody wants to think about it, it may happen and it's better to have at least talked about what might happen.

Laura's staying at the hospice for the next three nights which will give us (me mainly) a break. I checked her meds in before going up to the meeting. Two of the parents there were staying at the hospice. One lovely mum from Northampton, I'd met before on a social and again last week at the exhibition. She has already lost one son (4 years ago) to an unknown condition and now her other son is quite severely affected by the same condition. I don't think it was any easier for her having already gone through it once and maybe even harder as her sons' condition causes a great deal of pain that is hard to manage. It seemed so sad that both her children have had such a cruel and debilitating condition. She cannot even leave her son at the hospice and get a rest herself as she needs to help with his care.

When I left the hospice, another friend was just arriving as her daughter was there and they were having a surprise visit by some Disney characters and she wanted to video record her daughter. Unfortunately I think Laura's arrival from school would be too late to meet them but in any case she would probably push them away!!

This afternoon I've been up to the kennels to sort out a few things. The people are moving out today. A friend of ours is staying there tonight but from tomorrow it will probably be Mick.

Later this afternoon I showed a nice couple round our house with a view to renting it. Not entirely sure what their set-up is but from what I gather they have 6 children under 8 (well 5 plus a bump!!!) "between them" and she is ready to move out of her house in Nottingham. I think they really liked it, especially the kitchen, the garden and the chickens! Plus they have a dog so that would be no problem and it's hard to rent with animals so they may be somewhat limited in their choice with that. Not entirely sure why they're renting but they are happy to rent for a longer spell and that would suit us rather than having a series of short 6 monthly tenants.

Mick's due home shortly and hopefully we'll get out tonight to celebrate my birthday yesterday.

Colds and coughs

Laura has quite a bad cold and cough. She even slept in until after 7 this morning and woke very bunged up. She's had a slight cough for a few days but now she is full of cold and has more of a chesty cough. We've had the Diana carers here again this morning (a bonus session!) and they remarked on how quiet she was. She had a bit of a temp (for her) as she was 37.6 rather than her usual 35.6. She perked up a bit at times but really hasn't wanted to do much at all.

I went to sort the carpets out (almost made a decision!!) this morning and then went up to the kennels to see how the kitchen fitting was going. It's looking good. We've had a few snags with measurements and some of the units have had to be changed but I guess it was to be expected as we never got B&Q to do a survey. It will be alright in the end though as we have a good fitter.

It's not looking good for escaping to Norfolk next week as J&H are probably moving out on Wednesday and Mick wants to stick around, plus someone has to stay up there if they have left. So Mick's dad will probably go to Norfolk instead. It's rather a shame as we could do with a break and the weather is fine and mild, but Mick's foot is still not 100% right so we wouldn't be able to go on our usual 6-10 miles daily walks. Laura's at Rainbows so we will have a rest at least.

An early night

Laura's doing so well at the moment with her seizure control. This med combination seems to be a good one for her although we still have some problems with dehydration and constipation.

She's had a fairly quiet weekend. Yesterday we had the Diana nurses here for 6 hours respite so I managed to sort out tiles, buy paint and look again at carpets. I went up to the house and saw the electrician about the kitchen lights and sockets and hopefully they've done the first fix in the kitchen. The utility room and bathroom units are coming on Tuesday (we must be keeping B&Q in business!!!) and the tiling is starting this week I think. Today I've chosen the doors, internal and external as they want to sort the kitchen door before the plastering is done.

Alex was home for the weekend which was nice. I took him back this afternoon. Laura didn't want to come with us and took herself off to bed for an early night so she must be tired.

This morning we had some friends pop in on their way home to the south east coast. It was really nice as they have a son with Dravet syndrome whom I'd not met before. He was a real sweetie. They only stayed for 3/4 of an hour as it was a long drive home for them but it was nice that they popped in.

A good week

Laura's had a good week. No seizures for a few weeks now! Yesterday I even managed to get her out in the garden after school. She had great fun, got very wet and very dirty!! It didn;t tire her out though as this morning she was up at 4.30am and school say she hasn't been tired at all today! I stayed up late last night to watch a drama and so only had about 5 hours sleep, and am starting to flag a bit now. Hopefully Laura won't be up quite that early in the morning.

I've been up to the house today. French windows are now in the kitchen and plaster board is going up too. Tomorrow the electrician is doing the first fix in there and so I'm meeting him to see where the downlighters and sockets need to be. This week I ordered the quartz for the worksurfaces and some tiles, although have decided not to go with the really cheap ones from B&Q but will get some from Parkside. I mean you have to live with them don't you! Had Potters round to quote for the carpets today. Came to about a thousand more than Creative Carpets so I'm heading off to Enderby in the morning to finalise which one to go for. Luckily Laura has 6 hours with the Diana nurses tomorrow, so I can get these jobs done.

It looks like the people will move out the weekend after this, earlier than the 1st April deadline we agreed. That is both good and bad. On the good side we can gutt the house sooner and give it a real clean out and crack on with decorating and moving stuff oer there. On the bad side it means someone else has to be living up there. Of course they are moving out just before we go away! Typical! Hopefully one of Mick's pals is going to stay there and look after things so we can have our short break in Norfolk. Mick will probably stay there the rest of the time until we move in. Thankfully Alex is home for Easter from 20th March. Just hoping he isn't planning on going away as I think I will need him around here!

Spring is in the air!

It's a lovely day today, the sun is shining and I've just spotted yellow and purple crocuses flowering amid the snowdrops and cyclamen. There is even a Pasque flower (usually seen at Easter) starting to flower! Spring is definitely in the air!

I also spotted Fiona, the semi-resident pheasant, rooting on the rockery, her favourite place in the garden. She looked beautiful with her feathers glistening in the sunshine. We first spotted her a couple of months ago when she probably came to steal some of the chicken pellets, perhaps she thinks she's a chicken or maybe she just knows where she can always come for free food! I suspect the chickens are jealous that she has free range of the garden, and can come and go as she pleases. She has definitely put on weight since she started foraging in our garden and would make a tasty roast if only we could catch her!!! Just joking! But I love pheasant and have a lovely recipe but wouldn't eat Fiona. We can get pheasants for £3 each when we go to Norfolk so will bring a few back with us when we go.

Laura has 3 hours respite today and I have plans to head for the greenhouse and start to propogate some plants to take to the new house. The garden there is sparcely planted and rather neglected. There are some seriously huge conifers that need removing and a large pond that will need filling in. So there is a lot to do but there is a lot of potential there as the garden is very big. I will probably concentrate on the front garden as it is the prettiest, and will leave the back for Laura as it is enclosed.

Signs

I've been on eBay to order some signs for the new house.

Living amidst the business (boarding kennels) is going to stress me out big time as you have NO privacy. When we arrived this morning a customer had just left their Land Rover part blocking the main road through, so we couldn't get past and had to park at the back of the car park. It was laziness as there were other spaces in the car park just further away. We had a legitimate reason for needing to be close to the house as Laura was in the car. I went to complain to the dog trainer as it was one of her clients. I know they are customers but they are going to have to learn some manners or I will put a sticker on their windscreen!!

So I have bought 3 signs:

Private Property - No access ... this is for on the house to stop nosey people thinking it's access all areas!!!

Private - No Parking ... for my parking space at the rear of the house (Jim thinks people will ignore this though and we may well have to get those posts that can retract into the ground).

Disabled access required at all times ... this is also for the parking spaces as there are two of them. I need one for the school bus.

I also bought a house name sign in slate. I've decided to name the house "Orchard House". I felt it appropriate given it and the business have the same postal address, plus it sounds grand and I've always wanted to live in a house with a name!!!!!! (Snob)

A break

I've just booked a break in Norfolk (Burnham Market). It's the Wed-Sat after my birthday so only a couple of weeks away. We both need a break before we move and Laura is already booked into the hospice for those nights, so we really needed to take advantage of that.

Usually when we go to Norfolk we stay at the Lifeboat at Thornham, but we've decided to go for a cottage for a change. We've not stayed at Burnham Market before although have visited a few times. It's rather a yuppie area, Chelsea by the sea! The cottage looks nice and is close to the centre with shops and pubs so that will be handy! It will be nice to have a bit more space than you get in a hotel room. We won't cook though as there are lots of good pubs for eating out.

Laura was coughing a lot again last night but is fine during the day. I have cough medicine for her but am not sure if it needs to be swallowed to be effective. She won't swallow it and so it would have to go down her g-tube but that seems like it would bypass the area needed (but maybe I am wrong!).

We went up to the kennels with Laura this morning. She stayed in the car and was happy enough although got impatient to leave after 20 minutes!! The kitchen is taking shape. The back window is in now the doors have been bricked up. French windows waiting to go in at the front on Monday. Bathroom has had a first fix of all the appliances (loo etc!!) and the dado rails etc have been stripped off ready for tiling to start sometimes soon. The Rhinofloor is in at Potters so that's good and actually I should ring them to let them know it can't be laid yet. I need to get a Private sign for the side door as one nosey customer was making towards going into the house for a look around!! I had to get out the car and redirect him!! He knew the Reception had moved so was just being nosey!

Unwell

Laura looked rather dark under her eyes last night and was a little subdued. She was coughing on and off through the night and has woken with bags under her eyes. She's brighter though and so has gone to school but hopefully won't go downhill during the day.

David Cameron's son died from a seizure yesterday which brought it home to parents like me. I didn't actually hear the news till later in the day as I was at a Parents' meeting at Rainbows for most of the day. Coincidentally we had a talk at Rainbows from the Family Liaison worker who leads on Bereavement. We also heard about the new extension to the hospice which looks and sounds fabulous.

I've started clearing out some paperwork from the study and have filled about 4 recycling bags so far and still have heaps more to do. The study/office at the new house is a little smaller and so we really do need to lose some of our clutter. Actually Mick has archived most of his half so it's mainly my junk!! Some of mine dates back to teacher training 13 years ago so that is going first as it is very outdated now anyway. Teachers are big on hoarding!!! I'm not going to ditch all my stuff, just old paperwork that is outdated.

The new house

The new house is starting to take shape.

I went up on Thursday and the bricklayer was there bricking in two side windows in the new kitchen/diner. Apparently the doorway from the utility to the existing kitchen has been bricked up today and a new doorway made from the new kitchen to the utility room. work starts on Laura's bathroom on Monday. So it's starting to take shape. I really ought to start taking Laura for drives up there so it's not a total shock when we move in there!

We're planning on moving in on 18th April or thereabouts. Laura is at Glenfield that weekend so that's convenient. The existing occupiers are due to move out by 1st April. At the moment they can't move to their new place as the existing occupiers there have nowhere to go, so it looks like they will have to rent. We discussed this as a possibility a few months ago (thank goodness) but didn't expect it to be a reality. Hopefully this won't become a problem for us.

Teeth

I was brushing Laura's teeth when one came out, but unfortunately she swallowed it! This is the 9th baby tooth she's lost and the first in about 2 years.

She's pretty early losing her teeth, as was Alex. The one below obviously pushed it out as it is visible already. It's a shame she is so early getting her adult teeth as she is so small sized and has a tiny mouth so they are a little crowded.

Busy morning

A busy morning this morning! My new leather sofas for the back room arrived. They were so well packaged it took me a couple of hours to get them unwrapped! They look very good although are really for the new house and will fit better in the downstairs lounge which is slightly bigger. They are very comfy. I freecycled one of the old sofas to a woman and her son in law. She told me her daughter ran off with the furniture leaving her son in law with nothing to sit on! Mick is very skeptical everytime a freecycler comes out with a sob story but really I just wanted rid of it to whoever could pick up on the day.

Then the wheelchair repair people came out to replace a missing bolt from one of the footplates. Kind chap left me a spare too which is handy to have.

I freecycled a load of Laura's toys too. We won't have a playroom as such at the new house so I am trying to scale down her toys. It's tricky as she has lots she plays with but others she mostly ignores but may play with in the future. I think it's time to be ruthless as we really won't have much storage room in the house.

It's snowed again this evening, not forecast much in advance so rather a surprise. Hopefully rain is following on and will wash it all away by the morning. I'm going into school tomorrow morning for some meetings and then out to lunch with friends, so don't want to be stuck at home Laura-sitting again!

Exciting news!

I got an email from Charlotte (Dravet) today. She invited me to attend a Dravet conference in Italy in October. Wow I am so thrilled and proud to be invited. It's all expenses paid too!

Snow snow go away!!

We've had a lot of snow this week, by "a lot" I mean a lot for SN school transport to have a problem, but certainly not a lot by Canadian standards!!

So SN transport was off Monday, Tuesday and Thursday this week, and probably would have been today if I hadn't kicked up a stink with the Leader of the County Council! He's a very nice man, apart from when he went on the news on Tuesday and blamed school closures on lazy teachers and said he had written to Heads to tell them to dock teachers pay if they didn't make "reasonable efforts" to get to work. That was like a red rag to a bull for me, so I got on the internet, found his email address and sent him an angry email telling him that this teacher would have gone into work if his council hadn't cancelled all SN transport!!! The official reply yesterday (after a number of personal emails from him that were very supportive) was along the lines of 'elf and safety' with icy roads blah blah blah. To which I replied, hang about, the roads are too dangerous for SN transport but OK for teachers to use!!??!!! But that was a side issue by this point as I had realised that many of the mainstream schools made an effort to open but all special schools automatically shut when SN transport was cancelled. My school was open foru days and on the fifth staff were still expected in by 9.30 but of course I couldn't go as Laura was off.

There shouldn't automatically be a correlation between SN transport being cancelled and special schools being closed, as some parents may live in accessible parts of the area and be able to take their SN child to school (as I would have done on Tuesday at least). Certainly there isn't a correlation in other parts of the country. He is investigating that one for me and providing some statistics, such as what percentage of SN schools were shut each day (my guess after listening to the lists on radio Leicester is 100%!!!) and how many special schools were open to pupils if transport was cancellled (definitely think this was 0%). Meanwhile I have rung Laura's school and asked what their school policy - they're getting back to me shortly.

Busy with life

I've been slow with posting updates in the past month, mainly due to being busy with life. The move to the kennels is progressing fast and I've been busy buying things we need (new kitchen, bathroom, everything really!) and scheduling installation and adaptions. Plus I'm back at work which is great but knackering.

Laura has been well and relatively seizure-free since December, thanks to Topamax I think. Her behaviour is not so great though and she can be very hard work at time. She is currently still obsessed with water, perhaps because Topamax makes her very dehydrated. She will drink some water and then proceed to decant it between cups or pour it on the floor. She is permaently wet through pouring water down her clothes. We have increased the fluid in her feeding plan and this seems to have helped alleviate some of the effects of dehydration but her obsession continues. Eventually she will switch to something else and at least it is ONLY water she is pouring about the place.

Not surprisingly with dashing here, there and everywhere, I have gone down with a rather nasty chest cold. At least Laura has respite this weekend, so I can rest a little. Hoping to feel a little better tomorrow as it's a family meal to celebrate my mum's birthday - can't say what age as I don't think she wants it advertised, but it is a special one!

Bathrooms

Went over to Leicester for a meeting today only to find it had been cancelled BUT they forgot to tell me!! Not too happy as it was a bit of rush to get there and I wasn't feeling too great anyway.

But I was glad to have the rest of the morning free to do other things. Just as well really as at 11 B&Q rang to say they were at the kennels with our bathroom! Actually B&Q had rung earlier to say it wasn't coming today but it turns out only one part was missing from the order. So I dashed over to Barrow to sign for it. Back again to Barrow this afternoon to see the OT about a changing bench for the new bathroom. She's going to put the order in for that and also get some reps out to try Laura in some chairs. She is so much better than the last OT who was about as much use as a chocolate teapot!! It will be so much better to not change Laura on the bathroom floor, especially a cold tiled floor!

"I'm bored!"

If Laura could speak English, this is what she would be saying!

She is clearly fed up of being off school and having her usual routine disrupted by Christmas! Apart from the bubbles, balloons and balls that Alex bought for her, she has showed no interest in her presents and in fact I opened them all as she wasn't even inclined to shred the paper.

She has even got fed up of all her Fimbles and Tweenies DVDs as five minutes (or less) into them she starts screeching for them to be changed. I've been a slave to the controller and the sink this holiday as her other main pre-occupation is water. She has learnt a new trick though as she can now pour water from one container to another! Of course this skill is not yet fine-tuned and much of the water ends up down her clothes or on the floor!

So when Rainbows rang this morning to say they'd had some cancellations and did Laura want to stay for the weekend, until Monday morning?... I said "YES!" very loudly! And you know what, she was soooo happy to go there. She has fallen in love with a set of large tactile discs that they have hooked to the wall on one of the corridors and she happily spent an hour and a half taking them off the wall and then putting them back up again. When I went to say goodbye she was obviously fearful that she was being taken away from them as she pushed me towards the exit!!!! So we are both going to be happy this weekend and if you wonder what I will be doing, I can tell you it will mainly be SLEEPING!!