Happy Birthday Laura!

Wow, it's Laura's 9th birthday today!

She's had a pretty typical day but has enjoyed having the Happy Birthday song sung to her repeatedly and has taken 6 balloons to bed with her! Apart from that, she hasn't really acknowledged her birthday. She did enjoy ripping up the envelopes from her cards and it's nice to see the cards on the mantelpiece (but not sure how long she will permit them to stay there on display as in her mind they don't "belong" there as it's normally empty. But so far so good!)

Tomorrow she goes to Glenfield for the weekend and I am really looking forward to a lie-in in the morning. I'll do a bit of Christmas shopping but not much else over the weekend, although Mick and I have another meeting up at the kennels.

The epilepsy nurse has done an urgent referral for Laura's helmet but as it's the orthotics dept I don't expect we'll get an appointment anytime soon.

Ouch!

Laura had an accident in the school playground yesterday. Apparently her legs got all tangled and she walloped the concrete. Her face looks quite sore but she hasn't been troubled by it thankfully.

I've asked the school to see if the physiotherapist will watch her walking as I feel she is more unsteady and I'm worried she'll do even more damage next time. I wasn't happy with the school as they didn't ring me about it and so I got a shock when she got off the school bus. I put a note in her home school diary and the Head of primary rang today to apologise for forgetting to ring me.

Mirrors

I bought Laura a set of mirrors for her birthday. They're for special needs kids so cost the earth and I took a chance that Laura may not like them but as she loves foamy things and these are set into thick foam, I thought I may be on to a winner... and she LOVES them!

Actually it's not her birthday for another week but I'd left them on the kitchen table after unpacking them and she soon scooped them up to sit and examine them. She then took them to bed and got up with them yesterday morning. I had to prise them out of her hands before she went to school yesterday!!

A good week but sad news today

Laura had a good week at Rainbows and at school. No more seizures.

On Thursday Laura's school visisted Loughborough Fair. Laura didn't want to go on any rides, school said, which was a shame as she usually loves them, although she can be reluctant at first. Not sure what she made of Disney on Ice, Finding Nemo but no doubt she enjoyed the coach trip at least. They were very late getting back, almost 6pm rather than the 5pm that they'd expected!

Another one of the children on our Dravet forum has passed away this morning. I've had a candle lit all day in memory of her.

I had a hospital review yesterday and the surgeon has advised me not to return to work until after Christmas. I think it's because I had a bad infection and didn't heal as early as I should have done. It's frustrating but I have to take his advice as he knows more than I do and I'd hate to have a relapse. I emailed the Head and asked if I'd be able to go in for a few hours but she said that I wouldn't if I am signed off, which is a shame as I had hoped to do this.

Mick and I enjoyed our break in Norfolk this week. It was the first break we'd had since June and although it was only 2 nights, it was nice to have a change of scene and get some fresh air. I bought a decent pair of binoculars and did some bird watching at Titchwell Marsh whilst Mick did some longer walks with the dogs. I did manage a couple of 1-2 hour walks but that was my limit and I did feel very tired at the end of each day.

Today

Had a crisis to sort out at the kennels so we didn't get away to Norfolk as planned. We've managed to band aid it for the time being but there are probably huge changes on the horizon there in the next few months.

We're going to drive over to Thornham in the morning. The weather is freezing but I really need a change of scene and to escape for a few days, and it will give us a chance to mull over the kennels issues.

Laura had a seizure at school this afternoon. Looks like the electronic white board was the trigger. Not great as it's used a lot and most classes have them on all day long. She seems so very light sensitive at the moment. The sz was just after 3pm so she was rather subdued when she arrived at Rainbows, didn't eat at dinner time but perked up in the bath and was asleep when I rang at 9pm. Fingers crossed she is OK tomorrow.

This week

Laura's going to Rainbows this week. She was due to go in on Monday after school but they rang today to offer her an extra night tomorrow, so I will take her up in the afternoon tomorrow.

Laura's been "off" today. She had a seziure in the night (we think) as she slept in and had to be woken at 7 when the carer came to wash and dress her. She was bleary eyed and has been rather like that much of the day. She's had some short seizures during the day and slept for an hour after one not long after she got up this morning. She's not been herself although has had some moments when she has climbed on the table and the windowsill, and has enjoyed playing with water some of the day. Hopefully she'll be OK for her stay at Rainbows. These seizury days are coming every 7-10 days at the moment so hopefully she'll be fine and if not they will cope I'm sure.

Laura has a busy week at school with a trip to Disney on Ice in Birmingham on Wednesday and then on Thursday it's the fair and the Lions or Variety club pay for the kids from Ashmount to go on free of charge. She loves fair rides so fingers crossed the weather stays dry that day.Actually fingers crossed the weather stays dry all week as Mick and I are going to Norfolk for a short break. I really need a break and change of scene, although won't be able to do the walking we normally do, but some strolls will do me good and the sea air too.

Music and other triggers

Laura seems to be having more seizures on Thursdays and the initial trigger seems to be music as they are starting in music lessons. Sound and noise can be a trigger for Laura but it would be sad if music was a trigger too. I need to find out more about what happens in music lessons as she happily listens to music on CDs and DVDs at home with no signs of szs, but I guess if the kids are bashing cymbals and banging drums then that could be a problem for her. School agree that there is a pattern emerging with more szs on a Thursday, usually with the first happening in music.

Maybe it isn't the music but the room where the music lessons take place? I need to check with her teacher about that. When we saw the teacher earlier in the week for her parents evening she said that the flourescent lights in some parts of the school were troubling her. Perhaps it's the lights and the music. It's hard to know for sure.

I did mention the problem with the lights to the Occupational Therapist who came round for a home visit today and she will look into whether they can be changed for more natural lighting, or at least she will follow it up with the Head as it's hard to know who's responsible for this and who will pay for it. I know from our Dravet support group, other kids are troubled by flourescent lights so it's not a new trigger.

Dentists

Laura went to see the dentist a few weeks ago and got on better than with the old dentist. This one actually managed to have a reasonable look in her mouth.

Rather optimistically she referred Laura to the hygienist and today was her appointment. Laura was not in the mood for anyone looking in her mouth! She grabbed the little mirror and flung it across the room. Unfortunately it didn't get any better, so the hygienist gave up after 20 minutes, but she did suggest we try again in the Christmas holidays perhaps getting the first appointment of the day when Laura will hopefully be less grizzly.

Unfortunately she only works Tuesdays and so it's going to have to be a case of getting appointments in the holidays. It's always a pain when these people only work certain days (says she who works only on Mondays and Tuesdays!!). Our paediatrician only has Monday clinics (at Loughborough) and the VNS nurse only works Tuesdays. I hate having to ask for time off work for Laura's appointments, as I am sure school assume I can schedule for days I can't work. Mostly I do try and schedule these appointment for school holidays.

Anyway hopefully we'll have more look with the hygienist next month!