Alex baked some rock cakes and flapjack this afternoon to take back to uni with him. Laura surprised us all by eating half a rock cake! She especially loved the fruit and as she doesn't usually eat sweet things, this was new for her!
Saturday, 25 October 2008
Thursday, 23 October 2008
More balls!
Got gifted this on Freecycle...
Great for Laura as it has sounds, movement and BALLS!! She loves it!
Tuesday, 21 October 2008
Holidays
It's half term this week which is always a bit of a nightmare to keep Laura occupied. We have 6 hours of respite booked which is split into three lots of two hours. Yesterday the carers took her to Woodhouse Eaves park whcih is great for Laura as there is a swing with a disabled seat and also a climbing frame that is relatively safe for Laura. She had a great time and if the weather stays fine, Mick and I will take her again this afternoon. Laura spent an hour in the back garden yesterday and even played in her sand for quite a while whilst I collected flower seeds.
I've managed to book a week next summer at one of the Harriet Davis houses! http://www.harriet-davis-trust.brecon.co.uk/house1.htm
I've tried for the past 2 years but not managed to get one and thought I'd failed again for 2009 but there was one week free at the end of the summer holidays so have booked Harriet House which is in Tenby Harbour. Not sure if Mick will come with me as it's "No Dogs" so I may have to see if someone else will come along. It's a nice part of the UK and very convenient for amenities and has been adapted for disabled kids. Yippeee!
I've managed to book a week next summer at one of the Harriet Davis houses! http://www.harriet-davis-trust.brecon.co.uk/house1.htm
I've tried for the past 2 years but not managed to get one and thought I'd failed again for 2009 but there was one week free at the end of the summer holidays so have booked Harriet House which is in Tenby Harbour. Not sure if Mick will come with me as it's "No Dogs" so I may have to see if someone else will come along. It's a nice part of the UK and very convenient for amenities and has been adapted for disabled kids. Yippeee!
Balls!
Laura is really into balls at the moment. She has a few smaller ones and I will be getting a bigger collection for her birthday, but here are two more unusual ones...
The spiky one is a bumble ball which vibrates and when on the floor jumps around across the floor. The large one is a gym ball which Laura likes to bounce across the kitchen!
Thursday, 16 October 2008
This week
One of the kids on our Dravet support group died from a seizure on Sunday night. He was only 4, and an only child. It's heartbreaking for his parents. We met them all a couple of years ago when we had a families gathering in London. I would like to go to his funeral but it's 3 train changes away and just too long a journey for me at the moment.
Yesterday I went to a parents support group meeting at Rainbows. It was the first one, so a good opportunity to meet lots of new people and get a free lunch! They are going to be monthly, hopefully on a Wednesday so I will get to go. Most people don't work so it seems it won't be a big problem choosing a day that everyone will be happy with.
Laura had a dentist appointment yesterday. It's been 18 months since her last check up as the dentist left and they have struggled to replace her. The new community dentist was very good and didn't get bitten once! Laura seemed to like the large lamp shining down on her and co-operated quite well. She needs to see the hygienist next month and that could be a whole different story!!! I asked again about having Laura's back teeth coated but this dentist maintained the same stance as the last one, that they won't give her a general anaesthetic just to do this. Sort of annoying as we have tried to get them to organise it around other GAs in the past 2 years but they have never managed to achieve it. Luckily Laura doesn't eat sugary things so her teeth are all pretty good but I do want them to stay this way.
Have strained a muscle from bending down to coax Laura off the grass on Sunday. I will need to see the doctor next week if it's no better.
It's (grand)dad's birthday today - HAPPY BIRTHDAY!!
Yesterday I went to a parents support group meeting at Rainbows. It was the first one, so a good opportunity to meet lots of new people and get a free lunch! They are going to be monthly, hopefully on a Wednesday so I will get to go. Most people don't work so it seems it won't be a big problem choosing a day that everyone will be happy with.
Laura had a dentist appointment yesterday. It's been 18 months since her last check up as the dentist left and they have struggled to replace her. The new community dentist was very good and didn't get bitten once! Laura seemed to like the large lamp shining down on her and co-operated quite well. She needs to see the hygienist next month and that could be a whole different story!!! I asked again about having Laura's back teeth coated but this dentist maintained the same stance as the last one, that they won't give her a general anaesthetic just to do this. Sort of annoying as we have tried to get them to organise it around other GAs in the past 2 years but they have never managed to achieve it. Luckily Laura doesn't eat sugary things so her teeth are all pretty good but I do want them to stay this way.
Have strained a muscle from bending down to coax Laura off the grass on Sunday. I will need to see the doctor next week if it's no better.
It's (grand)dad's birthday today - HAPPY BIRTHDAY!!
Saturday, 11 October 2008
A busy week
The start of the week was busy with a visit to the Wheelchair clinic to pick up Laura's new SN buggy. It's the same model just the next size although they have provided a better harness and seat. We had asked for a purple one (OK I had asked for purple, Laura can't care less!!!) but they gave us a blue one again. At least Laura will know it is hers and won't get confused with a new colour. We used it in the new car on Monday and she seemed really happy with her good view out the front window! She was also happy to be back at school when we dropped her back, so that is good to see.
On Tuesday Mick and I went up to the EMAS HQ in Nottingham. This was following our complaint about ambulance response times. We had complained back in 2003 and following that EMAS had put a "flag" on our address which we had been led to believe would ensure a faster response by the ambulances but this has not happened except on rare occasions.
Anyway it turns out the flag just says "child prone to fits - allergic to diazepam" which is insufficient and doesn't flag up the need for a proper ambulance not just a paramedic car. The manager explained the system in detail and showed us what happened at the time of the recent incident and why there was a delay. They did fail their 8 minute response time even with the paramedic (10 minutes) and the ambulance was a terrible response of 25 minutes, so 35 minutes altogether. The ambulance came from QMC!!!!! The bottom line is that they have not been sending 2 manned ambulances straight away which is what we requested back in 2003. They will do so now and will also put on a better description of Laura's problems which I will draft for them. So hopefully we will get better responses in future. One shocking thing to see was all the "Alert" addresses - about 1/3rd of all calls were to addresses with an "Alert" on them. These mean there is a danger or history of drugs and/or violence etc and these automatically require back-up and so tie up both a paramedic car and an ambulance. No wonder there are so few ambulances available. Grrrrrrr!
So that was the start of the week. The end was rather quieter thank goodness! Laura was at Rainbows and I did some walking. On Friday I walked down to the village centre to pick up a medical certificate from the doctors. It was a lovely day for a walk although it was exhausting and I saw some effects later in the day. I need to be careful not to do too much at a time but build up gradually.
Laura has been a bit "off" since yesterday. Her school nurse rang me late yesterday afternoon to say she had been called twice to attend to her as she was not responding in class. She said she was OK at the moment but were worried about her on the school bus. As it was almost home time and I was alone so couldn't manage to collect her myself, I told her to ask the driver to drop her off first. She seemed fine when she got home but I saw in her diary that she had had a seizure at Rainbows in the morning before school. Surprisingly they had not mentioned it to anyone although had put it in her seizure diary.
Overnight she was OK but didn't wake until 7am this morning which is late for her. She went very clammy and strange half an hour later and had an hours sleep so probably that was another seizure. Her SATs dropped to mid 80s during the morning but no sign of cyanosis so not too worried. She perked up at around lunch time and has been better since then so hopefully is back to normal.
On Tuesday Mick and I went up to the EMAS HQ in Nottingham. This was following our complaint about ambulance response times. We had complained back in 2003 and following that EMAS had put a "flag" on our address which we had been led to believe would ensure a faster response by the ambulances but this has not happened except on rare occasions.
Anyway it turns out the flag just says "child prone to fits - allergic to diazepam" which is insufficient and doesn't flag up the need for a proper ambulance not just a paramedic car. The manager explained the system in detail and showed us what happened at the time of the recent incident and why there was a delay. They did fail their 8 minute response time even with the paramedic (10 minutes) and the ambulance was a terrible response of 25 minutes, so 35 minutes altogether. The ambulance came from QMC!!!!! The bottom line is that they have not been sending 2 manned ambulances straight away which is what we requested back in 2003. They will do so now and will also put on a better description of Laura's problems which I will draft for them. So hopefully we will get better responses in future. One shocking thing to see was all the "Alert" addresses - about 1/3rd of all calls were to addresses with an "Alert" on them. These mean there is a danger or history of drugs and/or violence etc and these automatically require back-up and so tie up both a paramedic car and an ambulance. No wonder there are so few ambulances available. Grrrrrrr!
So that was the start of the week. The end was rather quieter thank goodness! Laura was at Rainbows and I did some walking. On Friday I walked down to the village centre to pick up a medical certificate from the doctors. It was a lovely day for a walk although it was exhausting and I saw some effects later in the day. I need to be careful not to do too much at a time but build up gradually.
Laura has been a bit "off" since yesterday. Her school nurse rang me late yesterday afternoon to say she had been called twice to attend to her as she was not responding in class. She said she was OK at the moment but were worried about her on the school bus. As it was almost home time and I was alone so couldn't manage to collect her myself, I told her to ask the driver to drop her off first. She seemed fine when she got home but I saw in her diary that she had had a seizure at Rainbows in the morning before school. Surprisingly they had not mentioned it to anyone although had put it in her seizure diary.
Overnight she was OK but didn't wake until 7am this morning which is late for her. She went very clammy and strange half an hour later and had an hours sleep so probably that was another seizure. Her SATs dropped to mid 80s during the morning but no sign of cyanosis so not too worried. She perked up at around lunch time and has been better since then so hopefully is back to normal.
Saturday, 4 October 2008
Update
I've been out of action following my operation (hysterectomy) at the end of August. So lots to update on.
Laura's been doing better seizure-wise since we added Topamax in August. She is about half way through the weaning-on schedule and will be on the full dose towards the end of November. She has had a few seizures but nothing bad and even managed to go to school after a 6am seizure one morning.
Laura has changed her sleeping pattern for some unknown reason and is rising very early most mornings (often between 4am and 5am). She has dark rings under her eyes and is obviously not getting enough sleep but when she wakes, is wide awake and full of beans and won't go back to sleep, so we start our day very early most days. Thank goodness I am not back at work for a few more weeks.
The new car (WAV) has arrived although I can't drive it for another week yet due to my operation. We will be transporting Laura in it in her wheelchair for the first time on Monday as we have an appointment at the wheelchair clinic to have her new wheelchair fitted.
Laura's new piedro boots have arrived and are great, although I'm not sure she'd agree as she prefers bare feet! They are much more supportive than previous boots as they are much higher up her calf. Her walking is quite bad at the moment but hopefully these will improve things.
Laura's been doing better seizure-wise since we added Topamax in August. She is about half way through the weaning-on schedule and will be on the full dose towards the end of November. She has had a few seizures but nothing bad and even managed to go to school after a 6am seizure one morning.
Laura has changed her sleeping pattern for some unknown reason and is rising very early most mornings (often between 4am and 5am). She has dark rings under her eyes and is obviously not getting enough sleep but when she wakes, is wide awake and full of beans and won't go back to sleep, so we start our day very early most days. Thank goodness I am not back at work for a few more weeks.
The new car (WAV) has arrived although I can't drive it for another week yet due to my operation. We will be transporting Laura in it in her wheelchair for the first time on Monday as we have an appointment at the wheelchair clinic to have her new wheelchair fitted.
Laura's new piedro boots have arrived and are great, although I'm not sure she'd agree as she prefers bare feet! They are much more supportive than previous boots as they are much higher up her calf. Her walking is quite bad at the moment but hopefully these will improve things.
Subscribe to:
Posts (Atom)