Nursery teacher visit 6/9/16 at home Mrs F and Mrs .M. Came to visit for half hour one morning. William is so excited to start school and was so keen to meet his teachers. They got special treatment as he wore his storm trooper outfit especially. Many questions asked but in a nice way and… Continue reading Nursery

Friday 30/09 – Lister Bramble ward bloods Over an hour to wait to get bloods taken at hospital. In total we were there 2 hours!! Ridiculous considering we had a booked appointment. Saturday 1/10 Woke to 4 answer machine messages on landline. 111 Doctor trying to get hold of us as William’s test results came back… Continue reading What a week!

Relationships I write about this and my feelings in all of my blogs however it has to be noted that there are two types of friends/people around when such a shocking experience happens to you…. Some have just been amazing, contacting me more than they would usually from the beginning; making time to see me –… Continue reading Friends

Early July 2016 – 6 months has gone nearly since our first visit to GOSH and it’s not easier. I’m tired, I’m so, so sad and I’m just not sure it will ever go. I look fine on the outside, but I’m just so broken. I’m not coping. Night sweats meaning I’m changing clothes 2/3… Continue reading Me

Stage One: Tuesday 5th July 2016 – Genetic counselling for me at Lister. Emotional time and tough for me over the past couple of days – however kept this to myself. Cried all the way there. I know it’s not my fault – but I had him and it’s only carried through me – so… Continue reading The Genetics of it all

July 2016 – GOSH clinic Me, Matt and William go in on the train for our ‘day out’. Vitals first -he’s grown 6cm, lost weight and all looking good. Physio – all the same tests, he took part quite well and cooperated as much as any 3.5 year old. All looks the same as 6… Continue reading GOSH

William will be starting nursery school in September, so I planned a visit to the headteacher to chat through his ‘condition’. I cry, again, as I regale the past 6 months, diagnosis and our life as we know it. But she makes me realise that although life won’t be the same as every other boy,… Continue reading Headteacher

Visit to QEII on Thursday 27th June. Mum luckily is free to entertain Phoebe but also William, I don’t want him listening to all the conversation – he’s too intelligent and he doesn’t need to hear it all, yet. Luckily, she tells me what her role is – I had no idea we just got another letter so… Continue reading Community paediatrician

All the paperwork (& there is a lot) from GOSH means appointments or calls with GPs. A letter from GOSH comes with actions to complete by the medical profession, soon followed by another from the GP telling me I need to book an appointment….easy as that! So in my first time of being a Duchenne… Continue reading GP, Bloods & Immunisations

This is in Hertford, I drop Phoebe off at my parents and walk to the session, just a short 5 minute walk pushing my boy in the pram. We are early and the building is shut, so we walk round to see the ducks. I cannot restrain myself while watching my boy chat to the… Continue reading First Physiotherapy appointment