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.
Sunday, 27 April 2008
Friday, 25 April 2008
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.
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.
Thursday, 24 April 2008
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.
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.
Saturday, 19 April 2008
A new house?
We've been thinking of moving on and off for a few years now and actually did almost move to a bungalow about 4 years ago but it fell through in the end and we extended here to add a downstairs bedroom and bathroom for Laura. Recently I've been getting itchy feet again. I'm partly driven by a desire to have our bedroom closer to Laura whereas at the moment we are on different floors and opposite sides of the house, so monitoring her at night is very difficult and if she is iffy, I spend the night sleeping on the floor in her room which is not great.
My ideal would be a plot of land but that is almost impossible where we live and we don't want to move out of the village. Recently we saw a bungalow on the next road, down near the village centre, but it needed a lot of expansion or ideally knocking down and starting again but the plot wasn't really big enough to warrant that.
But now we have seen a house just around the corner, litrally just 2 minutes walk from our house and in a quiet cul-de-sac of just 5 houses. Mick went to see it yesterday and I went today. The plot it is on is AMAZING! It's 1/4 of an acre and on a corner plot so has garden all around it.
The house itself is only 2 bedroomed (with a small study) with them both being upstairs so it would need extending quite a lot for us but there is sooooo much room to extend without making much impact on the garden. The couple who own it have made the garden fabulous, I mean really fabulous. They get 35 different species of birds in the garden including woodpeckers and herons!
So we have told the agents we are interested and they are coming to value ours next week. Of course we need to do lots of de-cluttering and cleaning to get ours ready for the public. Today we did the study and now I can actually see my desk!! Tomorrow will be Laura's rooms. Mick will have to do the upstairs onMonday when I'm at work. Our bedroom is OK as I did it at Easter but Alex's room and study need a lot of work. I think I will have to put lots of Laura's toys in the garage. She doesn't play with many of them but we keep them just in case as from time to time she takes an interest in something different and you never know what it will be!
Of course the housing maket is in crisis at the moment or so they say, and so it's not the best time to sell but we'll see. I suspect we won't get the best price for this but should get £100k above the asking price for the other one, unless that gets into a bidding war which it might with the land, as someone might think it possible to split it like the house next door has done. Mind you that might put some people off as there is a house being built in the garden of the house next door. It doesn't bother me as it's a way off the boundary and can be screened quite easily but the access will be along the boundary. Hopefully it will put some people off!
Don't ask me what we will do until the extension is built as I have yet to figure that one out. The worst case scenario would be that Laura would have to have one of the upstairs bedrooms as there really isn't a room downstairs as it's all open plan, but hey we'll cope! Getting it is the first problem! So watch this space!
My ideal would be a plot of land but that is almost impossible where we live and we don't want to move out of the village. Recently we saw a bungalow on the next road, down near the village centre, but it needed a lot of expansion or ideally knocking down and starting again but the plot wasn't really big enough to warrant that.
But now we have seen a house just around the corner, litrally just 2 minutes walk from our house and in a quiet cul-de-sac of just 5 houses. Mick went to see it yesterday and I went today. The plot it is on is AMAZING! It's 1/4 of an acre and on a corner plot so has garden all around it.
The house itself is only 2 bedroomed (with a small study) with them both being upstairs so it would need extending quite a lot for us but there is sooooo much room to extend without making much impact on the garden. The couple who own it have made the garden fabulous, I mean really fabulous. They get 35 different species of birds in the garden including woodpeckers and herons!
So we have told the agents we are interested and they are coming to value ours next week. Of course we need to do lots of de-cluttering and cleaning to get ours ready for the public. Today we did the study and now I can actually see my desk!! Tomorrow will be Laura's rooms. Mick will have to do the upstairs onMonday when I'm at work. Our bedroom is OK as I did it at Easter but Alex's room and study need a lot of work. I think I will have to put lots of Laura's toys in the garage. She doesn't play with many of them but we keep them just in case as from time to time she takes an interest in something different and you never know what it will be!
Of course the housing maket is in crisis at the moment or so they say, and so it's not the best time to sell but we'll see. I suspect we won't get the best price for this but should get £100k above the asking price for the other one, unless that gets into a bidding war which it might with the land, as someone might think it possible to split it like the house next door has done. Mind you that might put some people off as there is a house being built in the garden of the house next door. It doesn't bother me as it's a way off the boundary and can be screened quite easily but the access will be along the boundary. Hopefully it will put some people off!
Don't ask me what we will do until the extension is built as I have yet to figure that one out. The worst case scenario would be that Laura would have to have one of the upstairs bedrooms as there really isn't a room downstairs as it's all open plan, but hey we'll cope! Getting it is the first problem! So watch this space!
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