We had a phone call from the secondary school as the older one had told them she stopped taking medication..(I had meant to but forgot). Its good news, we are becoming confident that she may be outgrowing her skin condition! At the age of 7, she started blistering in random places, it became apparent over time that it was sun related. Eventually she was diagnosed with polymorphic light eruption, basically she is allergic to the rays of the sun (not the heat) she got painful itchy blisters anywhere the sun touched her skin, not just in the summer, winter sun effected her too, as did sun rays through windows. She has lived with this condition for the last 8 years, but last year she noticed she didn't need to take the medication (she was taking malaria tablets as one of the side effects is a decreased skin sensitivity, but the potential side effects meant regular blood tests, and eye tests), and didn't need sun block if she was wearing sun protection clothes.
- Going back a little, she had to wear specialist clothing, a cardigan cost £50 + (you pay extra for the material to cover her hands) gloves cost £30+ , the material was spf 50 but she still had to wear sun block, as any gaps caused a blister. She got DLA for three years that helped with the cost but was turned down when we reapplied the reason given was that it wasn't for specialised clothing.. (its sad that I could account for where the money went, saving invoices etc, and could prove it made her life easier but that wasn't enough) we had sun protection film put on our windows and was informed by the hospital she wasn't to go abroad.
This year she had sun burn! Not normally something I would shout about, but a few years ago this would have been impossible. so fingers crossed.. still sunblock in the sun obviously but hopefully she will be able to lead a life without sunblock all the time, and she's got a school trip to Spain she will be able to go on, just got to pay for it now!
I was invited to be part of a 'citizens panel' for Birmingham City Council, basically following scenarios using the new web site and feeding back any problems. I was nervous about going, but the people who were facilitating put us at ease and I thoroughly enjoyed it. I actually felt that we were listened to which is brilliant! Afterwoods I left her my details and some information on our situation, and weve had contact since so alls good. I also sent her a link to the blog...
I have spent some time on the phone trying to be released from the house, we were sent paperwork saying position 1, but this was wrong we are positition 2, which means we cant bid on any other properties until the person in position 1 either accepts or declines the property, we fully appreciate could be upto a year until they view as its a new build property, but as we are in emergency accommodation it seems silly we cant bid as what sane person is going to turn down a new build? After a chat with the new build office it turns out we wouldn't have been offered it anyway as our situation as changed! (we were offered the house on the Friday afternoon, on the sunday our son turned 21 so we are allocated another bedroom,) Im glad we found out now rather than when the house was viewed. I have sent the e-mails but so far no replies, so we will see....
We have become popular with the neighberhood cats, one even coming in!
this cheeky soul was in the bedroom!
a random picture of a bed bug bite that I found..
we took advantage of the sun..
we washed dollies
we painted.. some of the paint even went on the box!
we built..
we practised our phonics
we hammered shapes into pictures
we collected natural materials for a collage
we stuck the things we collected onto sticky plastic
It took some concentration to remember which side would be the front
The finished article!
We met friends and went to the dragon boat racing, there were lots of activities going on in Brindley place, including a dragon dance, we are incredibly lucky that we have so many free attractions.
we made butterflies using filter paper
we made patterns on the paper
then soaked them in water
the end result..
and we got internet!!!
now to call the rent team as we have two letters that make no sense.. wish me luck!!
thanks x
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