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.
Wednesday, 29 April 2009
Thursday, 16 April 2009
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.
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.
Sunday, 12 April 2009
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.
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.
Sunday, 5 April 2009
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.
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.
Saturday, 4 April 2009
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.
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.
Friday, 3 April 2009
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.
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.
Thursday, 2 April 2009
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!
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!
Wednesday, 1 April 2009
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.
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.
Subscribe to:
Posts (Atom)