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 

September 27th – The Police Might Be Looking Good

1999:  Woke up at half eight in the hotel bedroom.  Nanny and Pa came to the room and we all went to breakfast.  Uncle Telly was already there as were the bride and groom and lots of other people from the wedding.  After breakfast we collected our bags and headed home, where we arrived at midday.  I didn’t sleep all day, so mummy made me an early tea of egg, bacon and chips (my choice) and I fell asleep after my bath at 5.30

2019: After having spoken to the policeman at last nights accident and, having had my tattoos checked, he feels mine should pass ok for the police. Mums police friend enquired about Crohn’s in the police and was advised that this is generally a no but every case is different.  Have emailed Norfolk Constabulary who cannot give a definitive answer at this stage. Need to do all the paper work, go for all the tests and then see nurse or doctor at the end stage. I want to apply but will be another blow if I get through for Crohn’s to get in the way again right at the end point. Its Lisa’s birthday today – Happy Birthday God Mummy.

#police #hotels #cooking #food #tattoos #Crohns #birthdays #kids #parents #grandparents

What is Cord Blood? It’s Hope. NHS cord Blood Bank

Cord blood is the blood that remains in the placenta and umbilical cord following the birth of your baby. It is rich in blood stem cells, similar to those found in bone marrow, and these can be used to treat many different cancers, immune deficiencies and genetic disorders.
— Read on www.nhsbt.nhs.uk/cord-blood-bank/what-is-cord-blood/

I am really interested in stem cell therapy and especially crossed with umbilical chord stem cells. So happy to see NHS are taking this on. If you are in the Uk and pregnant, please please read this

#chronicillness #stremcells #cancer #autoimmune #pregnancy

September 25th – Here we go Infliximab. Bye Bye Ulcers

1999:  Egg on toast for breakfast, on my request, but I then chose not to eat it.  I wanted to go in the garden but mum said she would have to dress me first.  She’s so particular my mum!  I solved the problem by going and getting my dressing gown.  Pyjama’d wellied and gowned I played.   Had a nap but woke after an hour as I needed to wee and then went back to sleep (after having weed in the appropriate place) This afternoon we went for a walk over the town with mummy’s friend Al (who actually ended up carrying me most of the way).  Mums beginning to panic now as we have a wedding tomorrow and I still don’t have an outfit.  We managed to get a pair of shoes – I measured up as a 9 but mum thought these were a bit big and we managed to get a pair of 8 1/2’s which looked slightly less like flippers. No luck with the rest of the outfit though so we went home, had some toast, and then headed for Tesco’s in Pitsea.  All mum wants is a pair of black trousers for me but there was no such thing in sight.  She eventually managed to get a pair of brown combats, a shirt and a jumper.  When we got home she decided I could wear my white shirt, black leather waistcoat and check trousers – all which have been hanging in my wardrobe all day long.  Women!

2019:  Less hectic but still sleepy day today. Drove to the hospital with trepidation and excitement to start my much wanted Infliximab infusion. Some needle issues due to dehydration (I will drink more next time) then we were away. Even got lunch just before the  hour end. Two hours of observations, tired , woozy but then free to go.  Now heading home for a long sleep ………….

#crohns #kids #parents #weddings #infusions #infliximab #mentalhealth


September 24th – When I didn’t like Haircuts? Really!!

1999:  Told mummy off for making the bathroom floor wet this morning (even though it wasn’t – well she always moans at me and I’m sure I don’t really make it wet either).  Still very hoarse and quite chesty so am on quadruple inhalers at the moment.  Playschool this morning but didn’t wish to discuss it with mum tonight.  Haven’t slept all day. Mum and I were due for a haircut but mum cancelled due to my ‘apparent’ tiredness and grumpiness.  I cheered up after my bath (I hate haircuts!) and happily kept on the go until 7.45 (in my age 5-6 pyjamas which are a perfect fit!).

2019:  Didn’t like haircuts? Probably something to do with many dodgy cuts by mum. I remember going off them for a while when I was 7 due to a barber snipping part of my ear as well as my hair! Love getting my hair done now- as often as |I can. If its not looking good then the cap goes on!

#hair #kids #parents #asthma #playschool #caps

September 21st – Some Days are Just So Tiring

1999:  Into bed with mum at 5.30, which is just as well as this was the longest I saw mum all day!  We snuggled up and after several snoozes, eventually got up at seven.  Off to Edon’s where I had a very hyperactive day.  I greeted mum with a big hug, shortly followed by tantrums and tears.  We headed home where I promptly fell asleep on the settee at 5.10.

2019: Hung out with Kiegan this morning and then took him home, called in to see mum and Mark  and then over to Zof’s parents for the afternoon. Came home to my own bed tonight though as feeling quite drained today – not sure if it’s the depression, medication or Crohn’s. Mum went to a Gatsby do last night, in Lowestoft, raising money for Motor Neurone and Mental Health. In true mum style, she has booked the venue for next February and organising a fund raiser for Crohn’s and Colitis. Should be a good one. 

#Gatsby #1920’s #crohns #depression #mentalhealth #depression #motorneurone

September 17th – Hidden Disability

1999:  Resistive to going to Edons.  Mum tried to brighten the day by reminding me I had playschool this morning.  I responded with “not play school again mummy”.  That stumped her.  Anyway, I had a lovely day and made a collage and painting.  Was very tired this afternoon though – frustration city.  By the time mum got me in the car I was sobbing (well I tried the evil glare first but that just didn’t seem to work).  I was all right by the time we got home though and had a “little” play in the garden, ate wiggly worms (more boringly known as ‘noodles’) and went to sleep.

2019: Today I have applied for my Blue Badge for parking for a hidden disability. Just waiting for the glares I get for “running” to the disabled loo and walking out with a look of relief. But anyone following after my Crohn’s  poo may well change their mind!

#crohns #disability #kids #mums #childminders #bluebadge