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email this blogthis share to x share to facebook share to pinterest saturday 15 april 2017 an explanation it s been almost nine months since i last blogged i need to get this post over with and tell you what s been going on in august last year my daughter finally got to see a paediatrician after almost a year long wait she was referred because she had coordination problems nothing new and we thought she might be dyspraxic in the year that we waited she saw a physiotherapist and an occupational therapist who assessed her strength and coordination and gave us exercises to do at home within ten minutes of being with the paediatrician things got weird he found she had no leg reflexes he made her do peculiar things like stand still and close her eyes she couldn t do it without falling he found a problem with her back that we didn t know existed and he was really interested in her feet the doctor was concerned i was there to find out if connie had dyspraxia he said he wanted to send her for blood tests a brain and spine scan a nerve test and a muscle test he was going to refer her to great ormond street childrens hospital my world shifted you know how doctors don t want to alarm you they say they just want to rule things out i was too shocked to ask him what he was looking for he mentioned that maybe the coordination part of her brain just hadn t grown properly and that was as far as he d go leaving the doctors with my mind reeling we then had to go and see a bloody film i even let her buy actual sweets at the cinema instead of smuggling them in i just felt so overwhelmingly sorry for her the minute she was in bed that night i set about googling the tests the doctor had done they had names failing them meant one of half a dozen things so i googled them one by one there was this one condition that ticked all the boxes it was also the worst my husband and dad my confidantes wouldn t listen they didn t understand that i hadn t just been randomly googling but that i d googled the specific neurological tests the doctor did their response was don t worry i threw myself into building the wardrobe it was my therapy but my heart was breaking lots of tests followed and after five months during which time every other thing had been ruled out we got the dna results back and she had tested positive for that one rare and horrible condition i m not going to name the condition here i don t like saying the word i also have to protect connie s privacy this is a condition which is degenerative disabling and life shortening there s no cure and no treatment it s going in one direction and we have to be careful who we share that with you guys are fine because you don t know our real names or where we live you won t find my blog by searching the condition our worlds fell apart the hardest thing was knowing that we had to make the best of things and be fun parents when fun was the furthest thing from our minds my husband had a nervous breakdown he d buried his head in the sand for months until the very last possible alternative condition was ruled out and he had to face facts he cried night and day didn t sleep and couldn t function i was five months ahead of him emotionally and i was able to get him help it s been a difficult time during the lead up to diagnosis we were looking at secondary schools not quite knowing if we d need wheelchair accessibility to be a factor we applied for schools with the added burden that we had to get this right where other kids might put up with a bad time at school and go on to do amazing things with their lives ours would not the school situation added insult to injury we were rejected on social and medical grounds twice it was absurd and incredibly distressing we ve dealt with shitstorm after shitstorm we found out connie has a heart condition we found out that she s likely to be at the severe end of the scale there was the time one of her friends asked her if she was upset because she was going to die young she wasn t aware of that the time the senco at school said they would no longer support our choice of secondary school the time connie spent 14 hours in a e with chest pains we ve had to figure out as we ve gone along how much to tell connie and when you don t get a manual or counselling with a diagnosis like connie s we re adjusting to a different path it s not the one we thought we were on but it s connies path and she s been on it from day one she was made this way the future we thought she had was never going to be hers we re working through a bucket list of sorts she s not going to die anytime soon but we have a lot of experiences to squeeze into what will be a short life and this disease is progressive so she ll never be better than she is today it s funny but connie has never been happier the diagnosis means none of her inabilities are her fault people are kinder at school and she gets chosen for things now whereas she never was before she s ten and ten year olds tend not to dwell on things she ll just grow up knowing about her condition from time to time as she grows up aspects of it will really hit home and cause distress we have all those teen years to come on a practical level we have to build a downstairs extension for a bedroom and a wet room for when she can no longer get upstairs we may have to take some walls down too i ve done nothing to the house nor picked up a single tool for six months until very recently i guess it s been like a kind of depression i haven t wanted to do anything as for this blog i will continue this won t become a disability blog we won t be the poster family for this condition it s not my condition i have my support network in place now so i won t be bitching about it on here i will continue to share the walk in wardrobe and the little built in cupboard i m just making in the living room i ve enjoyed every minute of that apart from the hinges hate hinges so please bear with me it s good to be back one last thing somehow i managed to delete my entire blog list if you ve gone missing from my sidebar please let me know and i ll add you again posted by emma kate at paint and style at 18 19 35 comments email this blogthis share to x share to facebook share to pinterest monday 5 september 2016 walk in wardrobe part 2 even before the stud wall was built creating the space for the wardrobe i was planning its interior so many options fabulously girly sleek and modern one of those hanging systems er some of these are clearly rooms rather than walk in wardrobes all very lovely but the vibe i m going for in this house is cottagey it s not desperately old but the rooms are not generous the ceilings are not high and the upstairs rooms have sloping walls as they re in the roof so i can get away with it the house was devoid of any character whatsoever when we moved in so it s been great to work with a blank canvas in many respects but you also have to work with what you ve got we aren t going to get away with grand i have no interest in modern and too girly isn t fair on the husband plus i m not really a girly girl i like old character a bit of industrial but most of all i want to get this look without spending a fortune and i want to do it all myself so let s start with the brick wall i decided to create one feature wall i knew i wanted something more substantial than wallpaper so i started investigating brick slips to get a beautiful brick slip cut from real reclaimed bricks you are looking at anything from 40 per square metre plus carriage and they re not light or easy to cut i found these on ebay from ngt design no this is not a sponsored post the beauty of these brick slips is that they are half the price of real ones are flexible and easily cut with scissors they come in seven different colours and i wondered if i could turn them from this into something more like this real bricks so i had a little play with paint and went from this to this i ll explain how next time but i ll give you a sneaky peak of how it all turned out my bricks i m in love with my faux brick wall i can never ever move house again sadly i now have to give away most of my clothes so that they don t obliterate the feature wall in the wardrobe back soon posted by emma kate at paint and style at 13 56 25 comments email this blogthis share to x share to facebook share to pinterest labels diy walk in wardrobe faux brick feature wall vinyl brick slips saturday 13 august 2016 walk in wardrobe part 1 things in the master bedroom haven t run as smoothly as i anticipated i started to build the stud wall to separate off the end section for the walk in wardrobe the ceiling has always been bowed in that room but it felt solid enough i mean my father in law and i pushed on it and it didn t move so we thought it was fine the last thing you want to do is take a ceiling down ugh the mess and devastation so i started to frame out the wall which was quite tricky when it came to the top i looked on the internet to see how to build a stud wall round a bowed ceiling nothing that should have been a clue that perhaps this isn t a good idea to accommodate the ceiling bow i had to shorten the sides of my stud timbers to get the top sitting level then pack out the side gaps parcel tape is the carpenters friend if you are working alone and don t have enough hands we got the electrician in to remove the wall light you see above and put a central pendant light in the wardrobe space ta daa but here s where it all started to go horribly wrong as i d had to clear the loft space just above the new light fitting i thought it would be a good time to board out the loft we d done a half arsed job when we moved in but the boards didn t reach the edges so i could gain more storage by doing it properly so there i was toiling away in the loft when i noticed something bad the loft boards were sliding between the central beam and the ceiling joists below they are supposed to be tight up to each other the ceiling was actually dangling in mid air the boards i had laid looked great but there was a dip in the middle of the floor that you could feel as you walked on it we called in a local builder who came highly recommended by a friend he pushed on the ceiling with one hand and it moved my husband when up in the loft above and you could see the ceiling bouncing not good we decided the best course of action would be to take the ceiling down insert a new wooden beam hoist up the joists as much as we could strengthen them and put in a new ceiling this meant emptying the bedroom and the entire side of the loft above you can imagine the chaos there was stuff everywhere not to mention dust and fibre glass here you can see the new beam across the ceiling and the shiny new strapping to pull the joists up the new beam is far more substantial than the old one it was cemented into a hole in the brickwork at one end and the other end rests on a solid wall that runs down the depth of the house the new and old beams were bolted together we can jump around in the loft now that s important the ceiling went back up and then before we could plaster we decided to replace the window which was an old aluminium frame and very badly fogged if we replaced the window afterwards it would bugger up the new plasterwork the ceiling works and plastering came to about 1000 the windows we did the landing one too came to 1000 this wasn t the worst part oh no there was worse to come the builder said he could put up my stud wall in about half an hour i really wanted to do it i mean when am i ever going to get an opportunity to do another one never but there were things all over the house and i was helping someone out with some childcare so i caved in for the sake of progress our sanity and family life i caved rest assured he put that wall up exactly the way i was going to but rather faster and without lots of painstaking research into how wide plasterboard is the builder has all that information in his head as he does this full time we also battened out insulated and recovered that lower end wall as it was very cold i got the builder to leave the other side of the wall open so that i could reinforce the stud work where i m going to need extra strength for hanging rails so the room was built next was the fun part the prettifying back soon with that posted by emma kate at paint and style at 11 47 12 comments email this blogthis share to x share to facebook share to pinterest labels bowed ceiling walk in wardrobe stud wall older posts home subscribe to posts atom instagram my etsy shop bartleby and sage vintage popular posts painting kitchen cupboards even melamine how to go about painting melamine i ve done plenty of research on this subject and i must say most of it recommends using a super pr how to write paint on glass tutorial the easy way okay this isn t a proper tutorial i am not an expert in fact this is the first time i have done a project like this in my life pitfalls of painting pine the dawn of annie sloan chalk paint has turned everyone into a furniture painter and that s a good thing i think creativity is to be e wood bleach results and a scrubbed pine table top well i ve been having a very interesting time in my chemistry lab otherwise known as the dining room i m pleased to report that th recycled tapestry love so um i was totally tidying the living room to show you the new sofa but i accidentally started with the inside of my filing cabinet a wh the finished painted mule chest the house stinks of furniture wax my husband wants to leave me for another woman any woman will do so long as she doesn t keep alteri the great interior design challenge i have really loved this series i recorded every episode so that i could watch it after my daughter was in bed and give it my full attentio yeah baby as promised one quarter of the kitchen is completed it took most of a day to sand the sides of two doors re esp and paint them so that th how to tongue and groove before i start let me remind you that i m not a master carpenter i know my stuff when it comes to paint but with carpentry i just fly an explanation it s been almost nine months since i last blogged i need to get this post over with and tell you what s been going on in a my blog list miss mustard seed my first nikon mirrorless camera nikon zf review 23 hours ago vintage vixen in the garden 1 day ago ikea hackers 5 easy ways to use this chic side table ikea holmerud round up 2 days ago tarragon thyme meals making a few choices and life generally 4 days ago paint and style 2026 1 month ago what this bike needs my dad s first postings in ww2 teffont evias and fovant in wiltshire 5 months ago elizabeth co elizabeth co holiday open house 2025 5 months ago infarrantly creative astrology for skeptics and the curious 7 months ago shortbread ginger 18th century scandal and intrigue 2 years ago sawdust in my socks have a look at my cordon apple trees 3 years ago from my front porch to yours diy christmas tree stand 6 years ago lizzie...