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.