Ironmo!

M, my other half, did the Ironman Switzerland last weekend. A very gruelling task that took a lot of training but he did it and I am hugely proud. M's parents were there to watch the event and took some video. The video can be watched at

www.abspmtiny.com/ironman09/ .

We are raising money for the children's hospice B goes to so if anyone would like to donate the link is www.justgiving.com/ironmanch

xx

Head Girl

Today elections took place. There wasn't mass media coverage. Polling stations weren't set up all around the country. Instead several students from a school for children with disabilities, all voted for the person they would like to be their head boy and girl.

My daughter came through our door this afternoon with a red badge on. It said "Head Girl". I screamed, cried and hugged.

She did it. She is Head Girl. For me, it makes me so proud. For her, its going to help her with her confidence in speaking to people she doesn't know and to have a place in Treloar History too.

Most of all, in mainstream its very unlikely she would have ever achieved this. Her serious response to my statement on "You will need to wear that all the time" was "What even in bed?" demonstrates her cognitive needs....but to us, it makes me laugh and weall know her little ways.

I often pine for things I think she may not have but she gives me so much to be proud of that those moments slip into the background and more importantly she should be absolutely so proud of herself. Well done B

We love you

xxx

Update on B

Just to let you know B is responding well to the anti-viral for Swine Flu. She has had no side effects and is ok so far.

Swine Flu

I have no idea why I am so remarkably calm about it since its at her school. Lots of people are panicking. I have a child who is vulnerable (chronic neurological conditions are part of the list and what happened at Christmas also is an indicator of how she finds it harder to fight these things) but I don't feel necessarily anxious. This isn't me! lol... B is now on Tamiflu, the antiviral, for prophylatic use as yesterday a member of her boarding house staff was confirmed as having swine flu. Personally I am glad she is having it because at least for the next 10 days she will be less at risk of getting the full blown version and then after that she will be at home. Of course, she may get it after but at least she will be with me.

In the meantime my thoughts are with those whose children I know who do have it and whose body systems will have a harder time fighting it. Keep strong xxxx

We made it

through the crap times, me and my man. Things are good. Looking forward, together now...

xxx

Still here!

Sorry, have had three people in the past 24 hours ask me if I am ok mainly cos so quiet and cos haven't done my blog for a while.

I am fine, just some major stuff going on for my closest friend which means in between my recent nursing placement (which was really not that great but finished so that's ok) and stuff here, I have been helping out with her six week old baby as much as possible.

I am so relieved my end of year nursing exams are done. They were a bit of a bugger though so we will see what happens there. Have assignment due this week and practical exam on the 14th and then that's it for 7-8 weeks. Phew.

B is ok. Had a couple of days of ickiness whilst on holiday recently but seizure activity has gone quieter again which is a relief because I do not want to use that emergency medication stuff! Had her prom this week, she looked beautiful. Most of you will have seen a pic but here's one anyway! and if anyone fancies a holiday in the Isle of Wight, I recommend the house we stayed in. Can be rented in two halves but we had all of it. Has a wet room. Nice and spacious. Its called Orchard Lee and near Yarmouth in West Wight. Fantastic week, including the weather.

So what other news:

Martijn is going to do the long trained for Ironman in Switzerland next weekend. swimming, cycling and marathon.....i wish him and his friend the best of luck and am very proud of them both.

B finishes school on the 15th for the summer and will be moving into a different boarding house when she returns. Unfortunately she will also be returning on Monday mornings not Sunday nights from then too as her school want to charge £200 for Sunday nights and Social Services will not pay that. What it means is we will have to get a carer in to do Monday morning routine and wait for the bus whilst M and I are at uni/work. Be nice to have her home on Sunday nights though. We recently saw a demo with Canine Partners with regards to her having an assistance dog in the future. We have decided to pursue it. It may be when she is 17,18 or when she leaves college, unsure at this stage. But the dogs give some independence whilst still having the need for carers. Any bit of independence will be a good thing I think...plus what a wonderful companion.

Lots of other stuff going on but won't bore you. I am sorry I haven't been able to keep in touch with everyone I wanted to. It's just been so manic. Hopefully the summer holidays will give me and B some time to have some fun together and relax a bit.

Take care all

xx

Reality

is when someone gives you some medicine that should be used in emergency, to stop your child from fitting for a continued period and before her brain ceases not able to compensate due to the mismatch of activity caused by the seizures. When the nurse tells you to phone an ambulance the first time you give it...."just in case"..... I am fortunate to know lots of people who give this to their child regularly, who can reassure me that its ok to give, that its ok to call the men in green etc etc....but it still feels yucky to know that we are at this point that it may need to be given.

Yesterday she had at least six seizures in a 3 hour period. The most I have ever seen. The past few weeks there are increasing? Why? Because we have moved her from one epilepsy medication to another? perhaps, or maybe her threshold is being breached again due to the time of year. Who knows..

What I do know is I am really scared now and couldnt sleep for fear of what this increase in episodes could lead to....With all the stuff we had to deal with in beths life, this is the one that scares me the most.

I have stopped writing my feelings down so much the past few months for a particular reason but this week has been really traumatic with this and a friend in need that I need to be able to open up somewhere.