October 8th – Toilet and Speech Training

1999: Up at five but played nicely with my toys until six when I stood on mum’s bed and said “Mummy can I have some milk please?”  How could she resist?  All that talking practice finally paid off.  Mum told me that I could take last night’s dinner to Edons for lunch but then she left it in the fridge!  Mum picked me up at Edons to be greeted in the toilet with poo bum and pants.  She said that summed up her day nicely.  I ate all my dinner which was a day late but lovely and then I was dragged off for a bath.  Mummy noticed 2 scratches on my head and asked if I’d been fighting with Josh again.  I said “no fight with Josh, fight with Dan!”  When Mum asked what I had done at playschool today I said “milk”.  Well, milk is always the highlight of my day, talking of which, I fell asleep with a bottle at six.

2019: Finally got my bloods done with the correct forms today. Stayed at mums tonight as she is taking me to the hospital in the morning so I cooked us all a lush Thai Green Curry for tea (That will increase the poo output!)

#mums #childminders #kids #crohns #cooking #bloods #scrapesandscratches #milk


October 7th – Blood and Poo Days

1999:  Up at 6.15 and dragged mum out of bed again (things are looking up – two mornings running without argument).  Mum put my Southend United shirt on this morning – which came down past my knees.  She said it looked silly.  I thought it looked great and insisted on keeping it on.  Was hyper and pooey at Edons today and was extremely tired by the time mum collected me and last I know mum was cooking dinner.

2019: Arghh.  Took my forms to James Paget Hospital to get my bloods done for Wednesdays infusion but had taken my poo form instead. Had to go home, get the correct forms and then go to Beccles Hospital round the corner from me, only to find the phlebotomy department shut.

#chrons #bloodtests #toilettraining #kids #parents #hospitals

October 3rd – Rainy Days

1999: Went to the shops with Pa this morning.  Far more interesting that the usual shopping expeditions I have to go on.  This one is direct to the sweet shop and back.  Mummy arrived home at lunch time, shortly followed by Telly. We all ate pasta for lunch and then mum took me to the park.  Just as we arrived it started to rain, but mum had promised – so out we got.  Why have you got that brolly mum?  You’re not going to get a chance to put that up – you have to “play with me”.  After five minutes the rain stopped but my trousers were soaked from the slides and swings.  We stayed for half an hour and then it really poured, we ran to the car but still got drenched. I fell asleep at half four on the settee.

2019: Apparently Aylsham police station phoned mum this morning to say they have my driving licence there if I want to go collect it. I asked her if they had my wallet too then. This she does not know. I cannot count the number of wallets I have lost over the years! Seeing my Wellbeing worker today so hopefully will get my desk and that sorted soon. Mums panicking and sending texts telling me to buy antibacterial wipes and wipe everything down. I guess she did see more of the sepsis than me – I was just delirious when it happened. Joking aside, I do know how lucky I was to survive and am very grateful to all the wonderful staff that looked after me.

#chidren #parents #grandparents #sweets #police #crohns #sepsis #mentalhealth #park #wetdays 


October 2nd – Bad Hair Day

1999: Into bed with mum at three and snuggled down until 7.15.  We had milk and tea and then put our coats on over our pyjamas and drove to Aunty Bim’s (as had to get there before she left for work)!  Mum popped in quickly to collect a dress – I can’t believe she’s dragged me out in this wind and rain just for that.  Al came round this morning – in his police car – a real one!  I sat on his lap for a minute and then stood with mummy to watch the lights and then we waved him off.  I asked mummy if she was better this morning, she said she was a bit better, but her back was still hurting and so I rubbed it better.  We went swimming,  Donals and then to see Aunty Eesa.  I caused havoc by putting a battery operated train, with moving wheels, on Dessica’s head.  Oh dear.  Think I’ve done a wrong one there.  This was confirmed when the scissors had to come out to set her free.  We left quite swiftly following this as mum looked a bit off colour again.  Off to Nanny and Pa’s tonight as mummy is going out- so that’s what the dress was about.  Pa gave me a wicked fire brigade set with engines, helicopters and cranes.  Telly came round and bought me my very first microphone.  Think it must be Christmas especially as I got to sleep in Pa’s bed all night!

2019: Currently working 12 -4 on my phased return which is nice. Occupational report is now in; advising my Crohn’s can be viewed as a disability so that is good as far as sickness and time off for this goes. Hopefully Infliximab will have good effect though and I will only be needing time out for treatment. As well as recommending my own desk (we currently hot desk) due to immune system depletion, they have also recommended a desk near the loo so all’s good.

#children #parents #childhood #trains #haircuts #crohns #mentalhealth #swimming #police

October 1st -Too Old for Breast Milk

1999: Up at what mummy said was an unearthly hour”.  I don’t know why, I think 5 a.m. is a perfectly reasonable hour of the day.  In fact it’s great coz it’s when I’m full of beans.  Mum’s poorly and couldn’t drag herself out of bed long enough to stay up with me.  Luckily mums friend Al was there and he got up, helped me with my teeth, I watched him shave and then he threw me in the bath.  Mum got up just in time to take me to Edons.  Playschool this morning and joined in with all the singing. They say I’m very good even if they did notice a puddle under me half way through.  I brought a pot of yoghurt home which I have to eat and then fill up with as many different colours as I can find.  It also comes complete with my very first sponsor form.  More money?  What’s mum complaining about?  I don’t cost much do I?  It’s not as if I ask for much!  She did buy me a new pair of trainers and a jogging suit (her choice – I didn’t ask) and it was only £28 after all (whatever that is – I only work in pennies).  When mum picked me up we went to Aunty Eesa’s and I played with Dandell and Dessica.  We stayed for tea and then all dived in the bath, which was a great giggle, then headed for home.

2019: Funnily enough mums friend Al was a policeman. Anyway, back in the real world I’m back to work today, had phone occupational health assessment advising my own desk and phased return of 4 hours a day. Also I will need time off for my Infliximab infusion which is due again next week. Mum messaged me today advising that her friend has 5 litres of frozen breast milk to donate and this is apparently good for Crohn’s. She has offered to keep two litres back for me but I have gracefully declined!

#children #mums #parents #breastmilk #crohns #mentalhealth #plyschool #singing

September 30th – Just Call me Doctor

1999:  Mummy has found me an old stethoscope from the loft so all have to call me doctor now – one up on mummy who’s a mere nurse!  I even made her say “hello doctor”.  Off to Edons who dropped me back off home this afternoon as mummy’s a bit poorly.  Don’t fear, doctors here.  Mum had made soup and some bread rolls but she’d put chili in the soup and it was HOT!!!  I ended up with tomato soup and fell asleep on the settee at six.

2019: My love of medical and emergencies clearly started young. Along with the stethoscope I had lots of toy ambulances, police cars and fire engines. I remember wanting to buy another fire engine in the shop one day and Mum saying I had plenty. I told her “you can never have enough fire engines”. I was only repeating what she always said about shoes (I used to have to physically pull her away from those shops). Haven’t done my police application yet but the forms are there…..

#children #parents #doctors #emergencyservices #police #humour #fireengines #shoes

September 29th – The Land of Make Beleive

1999; Up at 7 and wandered into mums room with Peepo book in hand.  Decided to take my umbrella to Edons – it wasn’t raining but it was definitely a wet morning.  By the time Nanny collected me mid morning I had no clean trousers left and I’d left home with 4 pairs!  I had fun playing in Nan’s garden and most of her food cupboard is now in the back of my van, but I have sold it all back to her.  Much the chatter box as ever but am picking things up so easily now.  At one point I told nanny she “make me mad”.  Mummy came home at half five and we stayed at Nan’s for tea and a bath and I washed my own hair from start to finish.

2019: Just about recovered from Friday night. Generally feeling better in myself now and due back to work Tuesday which I am now looking forward to. Tempted by mums text offer asking if I wanted to move to the Pitcairn Island in the Pacific. Apparently you apply for free land (on lease) and just build your own home! She can do the mental health stuff, I can do the emergency stuff and Mark, Zof and Kiegan can develop whatever is good for them. Well Obviously I wanna go. Don’t think Ill get my in Infliximab there though.

 #children #parents #Pitcairn #vocabulary #crohns #mentalhealth