Laura's had a settled weekend with no seizures, except some eye blinks. She's still having the bedtime hysterics though but hopefully these will settle too.
Today she's been to the Rainbows activity day and seems to have had lots of fun. She was making chocolate crispy cakes when I left this morning and came home with a plate full complete with mini easter eggs on top. Lots of other Easter edible goodies too. It's a shame she won't want to eat any of them but I'm sure Alex will help her out there!!
The carers at Rainbows commented that she pushed the basket of fiddly things away that they'd got ready for her and I told them that she has suddenly stopped playing with them. This seems to happen from time to time, she has an obsession about one activity/toy and then drops it suddenly. At the moment she seems to have moved on to playing with her threading beads, although that really just involves moving them in her hand and then throwing them on the floor and she soon gets bored. She is still into touching things though and enjoyed melting the chocolate in her hands and crunching the rice crispies so I suggested maybe cornflour, paint or shaving foam etc for tomorrow. I'll put her overalls in her bag.
I had intended to go into work today but was late dropping Laura off and had to wait in a queue for the nurse to do all Laura's medications paperwork, so I didn't get away until 11.15.
It's been a nice day today so I went to the garden centre to buy some veggie plants and some geranium seedlings. So the rest of the day was spent potting them all up and sweeping out the greenhouse. It still needs a good clean on the outside but that can wait!!
Monday, 31 March 2008
Tuesday, 25 March 2008
More seizures
Yesterday we decided to take Laura and the dogs to Bradgate Park,as the weather was fine and we had nothing else planned. Of course with it being a bank holiday, by late morning it was heaving.
Laura was OK on the way through the park but shortly after we'd turned back, I became a bit concerned about her as she'd been very quiet and still for a while. I was keeping an eye on her when her arm and head went up in an obvious seizure. It was a complex partial and I don't think it generalised but she was seizing for quite a few minutes before it appeared to stop. We picked up the pace to get back to the car as although I had her oxygen and paraldehyde with me, the sky was getting dark grey and I didn't fancy having to get her out the buggy onto the ground in the middle of a crowded park. She slept for the journey home and was fine until 6.30pm when she had another one. That stopped by iteself too, this time after just a couple of minutes.
Today she's been quite subdued, not moving off her armchair except to pick up her discarded threading beads (her latest most favourite toy). She did have a probable seizure this morning as I went in to find her in an awkward position fast asleep (or most likely post ictal).
This evening we've had the hysterics again. I'm pretty sure it's linked to her szs as she has some awareness with complex partial szs and so is probably fearful of them coming on and wants me close by.
So, not good at the moment and now I am rethinking her meds. Mayb the Epilim needs to be in there but just at a low dose. She was actually fine until we took away the last 2.5ml, so perhaps we should just put that back in. But first I'll try a couple of days with daytime clobazam.
Mick is away for the next 3 days, so I am hopeful things are OK with Laura. He's put the dogs in the kennels (after I moaned about Alex having to do their walks whilst he's away). Alex has got a bit of a cold still and so could do without early morning walks, so he's pleased!
Laura was OK on the way through the park but shortly after we'd turned back, I became a bit concerned about her as she'd been very quiet and still for a while. I was keeping an eye on her when her arm and head went up in an obvious seizure. It was a complex partial and I don't think it generalised but she was seizing for quite a few minutes before it appeared to stop. We picked up the pace to get back to the car as although I had her oxygen and paraldehyde with me, the sky was getting dark grey and I didn't fancy having to get her out the buggy onto the ground in the middle of a crowded park. She slept for the journey home and was fine until 6.30pm when she had another one. That stopped by iteself too, this time after just a couple of minutes.
Today she's been quite subdued, not moving off her armchair except to pick up her discarded threading beads (her latest most favourite toy). She did have a probable seizure this morning as I went in to find her in an awkward position fast asleep (or most likely post ictal).
This evening we've had the hysterics again. I'm pretty sure it's linked to her szs as she has some awareness with complex partial szs and so is probably fearful of them coming on and wants me close by.
So, not good at the moment and now I am rethinking her meds. Mayb the Epilim needs to be in there but just at a low dose. She was actually fine until we took away the last 2.5ml, so perhaps we should just put that back in. But first I'll try a couple of days with daytime clobazam.
Mick is away for the next 3 days, so I am hopeful things are OK with Laura. He's put the dogs in the kennels (after I moaned about Alex having to do their walks whilst he's away). Alex has got a bit of a cold still and so could do without early morning walks, so he's pleased!
Monday, 24 March 2008
Bedtime hysterics
Mmmm, not sure what is causing this but for the last two nights Laura has got really hysterical when she goes to bed.
We have had bedtime problems from time to time over the years but nothing for quite a while now. Previously she would refuse to get into bed without me being in the room but we rarely had tears just naughtiness. Now she actually wants me in the bed with her and gets really hysterical, lots of real tears and very forceful crying.
I'm not sure what is causing it but suspect it's seizure related in some way as she is also very clingy, jerky and noise sensitive in the evenings. Yesterday I added a daytime dose of clobazam to see if that helped but it didn't. Today I'll try it at lunchtime rather than in the morning as it's only 2.5mg and so is quite a small dose. Not sure what else to try except maybe melatonin although that may cause her to wake early which could cause further problems.
We have had bedtime problems from time to time over the years but nothing for quite a while now. Previously she would refuse to get into bed without me being in the room but we rarely had tears just naughtiness. Now she actually wants me in the bed with her and gets really hysterical, lots of real tears and very forceful crying.
I'm not sure what is causing it but suspect it's seizure related in some way as she is also very clingy, jerky and noise sensitive in the evenings. Yesterday I added a daytime dose of clobazam to see if that helped but it didn't. Today I'll try it at lunchtime rather than in the morning as it's only 2.5mg and so is quite a small dose. Not sure what else to try except maybe melatonin although that may cause her to wake early which could cause further problems.
Sunday, 23 March 2008
Holidays
It's Easter Sunday today, the start of the school holidays, we've had snow and of course it's cold and wet outside. This is always a trigger for thoughts of warmer climates and sun-filled holidays.
Last year I took Laura to Paris for our Dravet families get-together (with mum along to help out) but that was the extent of our holidays together in 2007. It was 2006 that halted our long run of great holidays with Laura. Up until then we had managed quite a lot of trips to Cyprus without any major problems. Of course we had had had an occasional seizure but nothing major and I guess looking back we were incredibly lucky.
Then in summer 2006 we ended up in ER first in Cyprus and then a month later in America, and then had to cancel a trip to Cyprus in October due to a very bad status seizure sending Laura into PICU for 6 days. 2006 was a bad year for seizures and hospitalisation and it made me scared to go abroad with her. I only went to Paris because Dr Dravet would be there and French hospitals understand Dravet syndrome, and plus it's not far and didn't require a flight.
But now I am starting to feel brave again and my desire for some sun is helping too... So the bad weather got me searching the internet yesterday for apartments at Aphrodite Hills, and I finally managed to get one for half term week. Mick won't go and Alex will be in the middle of his exams, so mum and dad have offered to come along. I did do it alone with Laura a couple of times in 2005/6 but after the ER trip and the realisation that most doctors in Cyprus don't speak English and the hospital in Pafos has no PICU, I decided going it alone wasn't really on anymore. Of course Laura is nearly 3 years older, bigger, stronger and has all her gastrostomy equipment now too, so I just couldn't lug it all out there alone.
I've just got to book some flights and keep my fingers crossed that we can get travel insurance again, although last time we used the E111 card and didn't claim on our insurance as that covers emergency treatment.
I always feel so much happier when I have some sun on the horizon! Having been almost totally deprived of sun last year (it even rained in Paris in August!!), I so need some this year. And Laura loves nothing more than being in and by the pool all day so we will both be happy!
Last year I took Laura to Paris for our Dravet families get-together (with mum along to help out) but that was the extent of our holidays together in 2007. It was 2006 that halted our long run of great holidays with Laura. Up until then we had managed quite a lot of trips to Cyprus without any major problems. Of course we had had had an occasional seizure but nothing major and I guess looking back we were incredibly lucky.
Then in summer 2006 we ended up in ER first in Cyprus and then a month later in America, and then had to cancel a trip to Cyprus in October due to a very bad status seizure sending Laura into PICU for 6 days. 2006 was a bad year for seizures and hospitalisation and it made me scared to go abroad with her. I only went to Paris because Dr Dravet would be there and French hospitals understand Dravet syndrome, and plus it's not far and didn't require a flight.
But now I am starting to feel brave again and my desire for some sun is helping too... So the bad weather got me searching the internet yesterday for apartments at Aphrodite Hills, and I finally managed to get one for half term week. Mick won't go and Alex will be in the middle of his exams, so mum and dad have offered to come along. I did do it alone with Laura a couple of times in 2005/6 but after the ER trip and the realisation that most doctors in Cyprus don't speak English and the hospital in Pafos has no PICU, I decided going it alone wasn't really on anymore. Of course Laura is nearly 3 years older, bigger, stronger and has all her gastrostomy equipment now too, so I just couldn't lug it all out there alone.
I've just got to book some flights and keep my fingers crossed that we can get travel insurance again, although last time we used the E111 card and didn't claim on our insurance as that covers emergency treatment.
I always feel so much happier when I have some sun on the horizon! Having been almost totally deprived of sun last year (it even rained in Paris in August!!), I so need some this year. And Laura loves nothing more than being in and by the pool all day so we will both be happy!
Friday, 21 March 2008
A successful trip to the shops
No more seizures since Tuesday, hooray! And now Laura is completely off Epilim for the first time in 8 years, another hooray!! She has times when she is very jerky and sound sensitive so we may have to add a daytime dose of clobazam, but I will give it a few more days before we do that.
Anyway, this morning I needed to go and buy another Easter egg for one of Laura's cousins. Alex was going to Budgens so I asked him to pick one up but they had already sold out of all the suitable ones. So I decided to brave it and go down to the village shops with Laura. Of course the disabled spots were taken by people without blue badges (grrrrr!) but after a little wait we were able to get into one just outside the main shop. Laura was grizzling, resisting getting out but I decided to insist rather than giveup. Holding both of her hands, we managed to get into the shop, get a couple of eggs and line up in the queue. She was pretty good standing there although needed a close hold so she didn't make off but it was manageable. So we will try it regularly.
I posted a letter to the OT whilst we were down in the village. I have decided to insist that they provide a suitable chair for Laura to have her feeds in. Apparently she has relented with school and has said that she has found a chair for them to try, so I think maybe I just need to find the right wording ("duty of care" is a good phrase that people use in battles with professionals, so I've included that in my letter) to persuade them to provide one for us. So watch this space!
On the car front, I have arranged a demonstration of the Wheelchair accessible Sedona.
Anyway, this morning I needed to go and buy another Easter egg for one of Laura's cousins. Alex was going to Budgens so I asked him to pick one up but they had already sold out of all the suitable ones. So I decided to brave it and go down to the village shops with Laura. Of course the disabled spots were taken by people without blue badges (grrrrr!) but after a little wait we were able to get into one just outside the main shop. Laura was grizzling, resisting getting out but I decided to insist rather than giveup. Holding both of her hands, we managed to get into the shop, get a couple of eggs and line up in the queue. She was pretty good standing there although needed a close hold so she didn't make off but it was manageable. So we will try it regularly.
I posted a letter to the OT whilst we were down in the village. I have decided to insist that they provide a suitable chair for Laura to have her feeds in. Apparently she has relented with school and has said that she has found a chair for them to try, so I think maybe I just need to find the right wording ("duty of care" is a good phrase that people use in battles with professionals, so I've included that in my letter) to persuade them to provide one for us. So watch this space!
On the car front, I have arranged a demonstration of the Wheelchair accessible Sedona.
Tuesday, 18 March 2008
An off day
I couldn't rouse Laura this morning, always a bad start to the day. Of course it was a work day for me and I had a car full of fruit ready to make fruit salad with the class and a trip to Church this afternoon. But I had to stay at home.
By 9 o'clock she seemed pretty OK. She'd got up and was in the lounge and even briefly played, but then she seemed sleepy and slept for most of the morning. At 11 she woke up only to go straight into a seizure. Alex was on hand and gave her oxygen whilst I gave her paraldehyde. She stopped fitting after about 20 minutes and slept until 4pm only waking briefly from time to time. It was a very subtle seizure, her eyes jerking and some twitching but otherwise only the blueness of her lips and skin and unresponsiveness gave it away.
She seems pretty OK again now, has had a bath and feed and is vocalising well as she watches the Fimbles. Hopefully she will be able to go to school tomorrow.
By 9 o'clock she seemed pretty OK. She'd got up and was in the lounge and even briefly played, but then she seemed sleepy and slept for most of the morning. At 11 she woke up only to go straight into a seizure. Alex was on hand and gave her oxygen whilst I gave her paraldehyde. She stopped fitting after about 20 minutes and slept until 4pm only waking briefly from time to time. It was a very subtle seizure, her eyes jerking and some twitching but otherwise only the blueness of her lips and skin and unresponsiveness gave it away.
She seems pretty OK again now, has had a bath and feed and is vocalising well as she watches the Fimbles. Hopefully she will be able to go to school tomorrow.
Saturday, 15 March 2008
WAVs (Wheelchair Accessible Vehicles)
We've been thinking about getting a new car under the Motability scheme but have hit a bit of a brick wall with Chrysler dealers and the Advance Payment (AP) on the Grand Voyager is pretty high so that has been putting us off too.
But in recent days we've talked about whether it'd be better to get a WAV rather than a standard car. There will be some advantanges to transporting Laura in her wheelchair, mainly to do with ease of getting her in and out of the car and avoiding the need to transfer her from car seat to wheelchair. On the downside the AP is higher on WAVs (although it is possible to apply for a grant to help) and you need pretty good access for the ramp, but all in all now is probably the right time to do it. Motability cars are leased for 3 years and it's be a problem if we needed to change to a WAV part-way through the 3 year period. Being realistic she will be over 11 in 3 years and much more difficult to get in and out the car, so I think we should do it now.
Anyway, I started to look into WAVs this week and have just about got to grips with how it works after being misled by the dealer in the car showroom who told me I had to buy the car and then get it adapted by a third party. After checking with the very helpful people on the Motability help desk, this only applies for certain adapatations and not for the adaption we would need. We need to do the whole thing through a specialist dealer who does the adaptation for you. In our case we would need the floor lowering and a ramp fitting but that's about it.
I've been looking at the Kia Sedona which is quite popular for WAV users. It's not dissimilar in spec to the Grand Voyager but a lot cheaper AP (£6000 rather than £13,500). WAVs are leased over 5 years and so the AP has to be thought of as covering a 5 year period which is only £1200 per year so not bad. The Motability scheme get your mobility allowance of £45 pw but in return you do get more than just the car... insurance for 2 drivers, servicing, new tyres, MOT etc are also paid for as is Road Tax but that is true for all mobility recipients so not just under Motability.
So I will be arranging a demo to see if it is going to be a good choice for us.
But in recent days we've talked about whether it'd be better to get a WAV rather than a standard car. There will be some advantanges to transporting Laura in her wheelchair, mainly to do with ease of getting her in and out of the car and avoiding the need to transfer her from car seat to wheelchair. On the downside the AP is higher on WAVs (although it is possible to apply for a grant to help) and you need pretty good access for the ramp, but all in all now is probably the right time to do it. Motability cars are leased for 3 years and it's be a problem if we needed to change to a WAV part-way through the 3 year period. Being realistic she will be over 11 in 3 years and much more difficult to get in and out the car, so I think we should do it now.
Anyway, I started to look into WAVs this week and have just about got to grips with how it works after being misled by the dealer in the car showroom who told me I had to buy the car and then get it adapted by a third party. After checking with the very helpful people on the Motability help desk, this only applies for certain adapatations and not for the adaption we would need. We need to do the whole thing through a specialist dealer who does the adaptation for you. In our case we would need the floor lowering and a ramp fitting but that's about it.
I've been looking at the Kia Sedona which is quite popular for WAV users. It's not dissimilar in spec to the Grand Voyager but a lot cheaper AP (£6000 rather than £13,500). WAVs are leased over 5 years and so the AP has to be thought of as covering a 5 year period which is only £1200 per year so not bad. The Motability scheme get your mobility allowance of £45 pw but in return you do get more than just the car... insurance for 2 drivers, servicing, new tyres, MOT etc are also paid for as is Road Tax but that is true for all mobility recipients so not just under Motability.
So I will be arranging a demo to see if it is going to be a good choice for us.
Wednesday, 12 March 2008
Medications
Laura's weaning off Epilim is going well and she's now down to just 2.5ml (100mg) in the evening). I'm feeling both scared and excited as she has been on this medication since 2000, so we have no idea whether it's doing everything or nothing. I've been of the opinion though that if she is going to have a seizure she will have one regardless of what daily anti-convulsants she's on. This seems to have been borne out as over the past few months we have reduced it from 15ml a day to 2.5ml with no increase in her seizures.
Disappointingly though I haven't seen any reduction in her bruising which was the main reason I wanted her off Epilim - tests showed she had some platelet dysfunction due to low fibrinogen and we had thought that the Epilim was the cause as it is a known side effect. But maybe it has to be totally out of her body to reverse the problem so we'll get her blood tested again when we next see her neuro in the summer.
Laura's clobazam has been increased and this is causing some increased unsteadiness (another known side effect and one we've had before on higher doses). I guess though it's a case of having to accept some side effects with these medications.
But overall she is doing OK and having a good spell at the moment which I am very thankful for.
Disappointingly though I haven't seen any reduction in her bruising which was the main reason I wanted her off Epilim - tests showed she had some platelet dysfunction due to low fibrinogen and we had thought that the Epilim was the cause as it is a known side effect. But maybe it has to be totally out of her body to reverse the problem so we'll get her blood tested again when we next see her neuro in the summer.
Laura's clobazam has been increased and this is causing some increased unsteadiness (another known side effect and one we've had before on higher doses). I guess though it's a case of having to accept some side effects with these medications.
But overall she is doing OK and having a good spell at the moment which I am very thankful for.
Friday, 7 March 2008
Laura's new bed!
Jez put Laura's new bed up today and I love it! It was a second but looks perfect and is great for Laura with its sleigh sides (just like her beloved Stompa junior bed).
It looks lovely as I'm sure you'll agree!
Laura's had a good day at school today and seems back to being her lovely lively vocal self!
Thursday, 6 March 2008
Seizure on school trip
Laura came back from respite today. She wasn't really herself and was rather warm. I rang school because she came home with all her bags but no buggy. Spoke to Laura's teacher and found it'd been left at school. Thank goodness it wasn't left at repsite as that's further to collect it.
Anyway, Laura's teacher told me that she'd had a seizure during their school trip yesterday and they almost had to give her paraldehyde. I looked in her seizure diary and they logged it as 2 minutes and she slept for an hour and 20 minutes afterwards. I wonder if it was the sun and water together as the trip was to a reservoir. Pauline said she'd been "off" at lunchtime today so maybe it's more than that.
Pauline also told me that the OT seems to have relented about the chair and has one she wants to show Pauline. So that sounds more hopeful.
One of the Diana nurses came round this afternoon to introduce herself, tell me a bit about their service and answer any questions. She was very nice and said she'd talk to the OT about a feeding chair for home, so fingers crossed. She'll come back in a few months to change Laura's mic-Key. I showed her the extension tube that had stopped working and she said that it sometimes happens when you use them a lot like we do.
I had a very boring day today as I ended up staying in all day for Laura's new bed to arrive. It was supposed to be delivered this afternoon but then one part arrived at 9am and the delivery man told me the rest would be between 10 and 11, so I waited for it only for it to come at 1.30. I wasn't too happy and told the company what I thought of their service especially considering they charged £35 delivery!! She said she'd do me a discount on the delivery charge but I'm still not too impressed.
I hope the bed (which is still in boxes!!) works for Laura as I've spent 2 years searching for one to replace her lovely Stompa Junior bed. It's a similar design with sleigh sides but is white (wouldn't be my choice of colour!!) and is full size. It cost £295 (incl a discount of £100 as it's a second with a few minor scratches/dents). I'm hoping it's just a few scratches or I'll have more to complain about. The company (Aspace) have stopped making this design and it was what I thought would work best for Laura to stop her rolling off the bed so I decided to go for it. Then I suddenly realised yesterday that it wouldn't have a mattress so ended up spending another £199 on one - a bit more expensive than a basic one as I got one of those memory foam ones to deter her from bouncing on it. So a very expensive bed all in, thank goodness we get DLA for her!
Anyway I'm off out with the girls tonight and Mick is babysitting so I'm hoping for no more szs as he's not very good at dealing with them.
Anyway, Laura's teacher told me that she'd had a seizure during their school trip yesterday and they almost had to give her paraldehyde. I looked in her seizure diary and they logged it as 2 minutes and she slept for an hour and 20 minutes afterwards. I wonder if it was the sun and water together as the trip was to a reservoir. Pauline said she'd been "off" at lunchtime today so maybe it's more than that.
Pauline also told me that the OT seems to have relented about the chair and has one she wants to show Pauline. So that sounds more hopeful.
One of the Diana nurses came round this afternoon to introduce herself, tell me a bit about their service and answer any questions. She was very nice and said she'd talk to the OT about a feeding chair for home, so fingers crossed. She'll come back in a few months to change Laura's mic-Key. I showed her the extension tube that had stopped working and she said that it sometimes happens when you use them a lot like we do.
I had a very boring day today as I ended up staying in all day for Laura's new bed to arrive. It was supposed to be delivered this afternoon but then one part arrived at 9am and the delivery man told me the rest would be between 10 and 11, so I waited for it only for it to come at 1.30. I wasn't too happy and told the company what I thought of their service especially considering they charged £35 delivery!! She said she'd do me a discount on the delivery charge but I'm still not too impressed.
I hope the bed (which is still in boxes!!) works for Laura as I've spent 2 years searching for one to replace her lovely Stompa Junior bed. It's a similar design with sleigh sides but is white (wouldn't be my choice of colour!!) and is full size. It cost £295 (incl a discount of £100 as it's a second with a few minor scratches/dents). I'm hoping it's just a few scratches or I'll have more to complain about. The company (Aspace) have stopped making this design and it was what I thought would work best for Laura to stop her rolling off the bed so I decided to go for it. Then I suddenly realised yesterday that it wouldn't have a mattress so ended up spending another £199 on one - a bit more expensive than a basic one as I got one of those memory foam ones to deter her from bouncing on it. So a very expensive bed all in, thank goodness we get DLA for her!
Anyway I'm off out with the girls tonight and Mick is babysitting so I'm hoping for no more szs as he's not very good at dealing with them.
Saturday, 1 March 2008
New shoes
Laura's feet have been turning under more and she seems to be stumbling more too. She was born with positional talipes and so her feet have always been slightly inclined to turn under and her hypotonia and ataxia just compounds the problem.
I looked at her special boots which she gets from the orthotics dept at the local hospital, and decided she had probably outgrown them. So a few weeks ago I rang the orthotic dept to get another appointment. No appointment had come through so I rang again on Thursday only to be told the waiting list was 13 weeks!!!! I was really angry, how can they make children with existing foot problems wait 13 weeks for an appointment to get new shoes? Can you imagine gong to Clarks shoe shop to be told yes your child needed new shoes but they'd have to wait for 13 weeks!!! They recommend you come back every few weeks to have your child re-measured. At the orthotics dept it's up to you to decide when your child needs new shoes and then there is walwyas a long wait. We've been doing this for 6 years so maybe I should have anticipated that but they won't put you on the waiting list until the child has had the shoes for at least 6 months and you have to say why you think they need replacing.
After a long and heated disussion, I told them I was going to make a formal complaint about the service (or lack of) provided. They asked if I wanted to go on the cancellation list, which was a stupid question given everything I'd said!
Anyway, half an hour later they rang to say there'd been a cancellation (Mmmm!) and could I come tomorrow (Friday) at 9 o'clock! So of course we went, but how many other kids are waiting for 13 weeks crippled by their special boots??
So we went to the appt yesterday only to find (surprise surprise!) that Laura's feet had grown two shoes sizes, she no longer needed the insoles that were throwing her feet the wrong way and now needed adaptations to the soles to allign her feet properly! Grrrrrr!!!!! I can't believe they wanted us to wait another 10 weeks - how much worse would her feet have got.
I will make that complaint as this is such a crap service for kids who already have mobility problems.
OK rant over, that feels better!
I looked at her special boots which she gets from the orthotics dept at the local hospital, and decided she had probably outgrown them. So a few weeks ago I rang the orthotic dept to get another appointment. No appointment had come through so I rang again on Thursday only to be told the waiting list was 13 weeks!!!! I was really angry, how can they make children with existing foot problems wait 13 weeks for an appointment to get new shoes? Can you imagine gong to Clarks shoe shop to be told yes your child needed new shoes but they'd have to wait for 13 weeks!!! They recommend you come back every few weeks to have your child re-measured. At the orthotics dept it's up to you to decide when your child needs new shoes and then there is walwyas a long wait. We've been doing this for 6 years so maybe I should have anticipated that but they won't put you on the waiting list until the child has had the shoes for at least 6 months and you have to say why you think they need replacing.
After a long and heated disussion, I told them I was going to make a formal complaint about the service (or lack of) provided. They asked if I wanted to go on the cancellation list, which was a stupid question given everything I'd said!
Anyway, half an hour later they rang to say there'd been a cancellation (Mmmm!) and could I come tomorrow (Friday) at 9 o'clock! So of course we went, but how many other kids are waiting for 13 weeks crippled by their special boots??
So we went to the appt yesterday only to find (surprise surprise!) that Laura's feet had grown two shoes sizes, she no longer needed the insoles that were throwing her feet the wrong way and now needed adaptations to the soles to allign her feet properly! Grrrrrr!!!!! I can't believe they wanted us to wait another 10 weeks - how much worse would her feet have got.
I will make that complaint as this is such a crap service for kids who already have mobility problems.
OK rant over, that feels better!
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