November 14th – Winter Sun Beds

1999: Up at six but played nicely in my room until half seven, when I woke mum by saying, “mum what’s that?”  She came to and eventually realised it was someone knocking on the door.  Lucky I woke her because it was my new mattress! We emptied my room and started to complete the construction of the rest of my bed.  Well mummy built it and I helped her by saying, “don’t worry mummy” when she looked confused.  At 10.30 she gave up and decided we needed to go and collect Pa’s electric screwdriver and grab a cuppa once there.  Had a little sleep this afternoon in my new bed, which remarkably looks like a bed and didn’t collapse.  When I went to bed tonight mum put my old mattress on the floor next to my new cabin bed in case I fall out in the night.  I think this is great as it means I can just jump out rather than use the steps.

2019:  Hmmm  Text from mum tonight asking if I want to go to Cape Verde with her in December as early Christmas Pressie (even though she had vowed £50 a head this year!|) Either Mark has peed her off or she just needs some winter sun. Anyway, I cant get any time off in December but maybe in January ……


November 13th

1999:  Up at six – just because it’s Saturday!  Mummy tried to cook sausages for sarnies in the microwave/grill, but messed it all up at the last minute by pressing the microwave button instead of the grill one resulting in ‘done in sausages’.  We had marmite sarnies instead – far safer.  I watched a parade on telly this morning with soldiers and bands.  Not to be outdone I used saucepans for my drums, their lids for my cymbals and a microwave bowl tied on my head with a scarf for my helmet!  Aunty Eesa came round and the dream of us kids playing happily whilst they had coffee and cigarettes just didn’t seem to come true.  We had egg and bacon pie with beans for lunch, followed by jam tarts – all home made – which was far more successful than this mornings cooking expedition.  We all piled in the camper van and headed for Southend where we spent time in an indoor adventure playground.  It was all quite good fun but I got very tired and poorly and kept crying for mum (especially when she went down a dark slide and took forever to get back up to the top again).  On the way home we all fell asleep.  I awoke for medicine and milk when we got in and went back to sleep at five with a wicked cough.      

2019:  Work today but have also booked my SIA badge training for first week in December. Looking forward to door work and extra money but not the 13 hous course work I need to do beforehand!

#children #parents #friends #cooking #homemade #SIA #Doorwork #money #armistice #remeberance


November 12th – Sir Alex Ferguson

1999:  Woke up at seven and found mummy in the bath.  She told me my juice was by her bed and I wandered off to get it.  I got downstairs just in time for Play bus this morning.  Al was there and made me marmalade on toast but I ended up eating most of it in the car.    Playschool today and they gave me a lovely book as a prize for my ‘colours’.  Well-done Nan.  Today I brought home two pictures and a night light candle stuck on a paper tray – designed by moi.  Back at Edons, I had my lunch and then played whilst Edons ate her lunch.  Apparently she was eating and thought my breathing was getting rather heavy; when she looked I’d fallen asleep on the floor, kneeling with my bum in the air.  Mum collected all the bits and me at 5.  We had cuddles, milk, juice, Pat, bath and a little bit of curry for tea.  Then it was off to bed with Peepo and juice.

2019:  Back to work today and then met Zof over at mums where they’d been having a PJ and movie day. We had snacks, food and a movie but I was more interested in the new kitten – Sir Alex Ferguson – Fergie for short. And true to his name he loves playing ball. But fetching and throwing like a dog!

#children #parents #playschool #childminders #football #AlexFerguson #ManchesterUtd


November 10th – And you are?

1999: Awoke at 6.30 and grabbed mums attention by calling her from my bed. She came in and we had a cuddle in my bed for a little while but then “I woke up”, so we got up for milk and the newly made chocolate cake (I’m sure it would have still been okay minus a spoonful).  Had a bit of a cough and a gunky nose, but still went to Edons and then on to Nanny’s.  We went to Asda and went past Uncle Terry’s house on the way.  I saw his car and got very excited so on the way back we had to stop and knock, but he wasn’t in.  Nanny had to even go in with her keys to prove it (she has keys for the collect and drop off laundry service!)  When mummy came home I was already in the bath with Pa, and afterwards we played summersaults and acrobats and then it was home to bed and sleep.

2019: Family time today – Zof’s Granny’s 70th  party continued. Met lot so few people whereas Zof’s siblings did the usual extended family event thing of trying to work out and remember who was who!

November 9th – Birthday Meals and Cake

1999:  Edons and minders club today.  We went to collect everyone from school and mummy met us in the playground!  She wanted me to show her my ‘school’.  I put her right and told her it was “playschool”.  I showed mummy the way and they were all pleased to see me.  I made mummy a lovely painting and we played with play dough and puzzles – and it’s not even my day.  They told mummy I was doing well – especially with my numbers.  They say I have settled in well and make my needs know.  And grass on the others.  I’ve discovered you have to snitch, as others will happily let you take the blame!  We made a chocolate cake at home, I loved the mixture even putting the spoon in the cake tin and trying for a huge mouthful, but unfortunately intercepted by mum.  We had tea whilst the cakes cooked and got them out of the oven before my bath.  It was seven o’clock by the time we were done, so mum made me go to bed – with bottle and story.  I decided to stay awake until 8.45 following several trips upstairs by mum – who found me looking at my diary and admiring my photos of me, looking at books and moving Spot my dog all around the room (and she only knows the half of it!)

2019:  Working yesterday morning for extra cash allowed me to take Zof out for a well-deserved brunch this morning in Leamington Spa. Tonight we had literally the nicest evening at Queans restaurant for Zof’s Granny’s 70th Birthday.

#children #parents #birthdays #Coventry #QueansRestaurant #LeamingtonSpa #Playschool #eating #cooking #diaries

November 7th – From Music to Musings

1999: Up at 7.15, mum and I sat down stairs drinking tea and milk.  I started ‘playing’ my Teletubbies bin just like a drum and then as a stage.  Mum seemed to prefer the drum version. It was quite nice today so I played in the garden ‘lots’ whilst mummy cut all the plants.  I just can’t understand her, she spends all that time dragging me round garden centres and planting them, just to cut them all down again!  We emptied the sandpit and washed it all down, along with all my garden toys ready for winter.   I ate bacon and beans in my ‘house’ but it wasn’t a very good cafe – I had to ask for my cuppa!  I was very wet from the water and mum was very muddy so we had a lovely hot bath mid-afternoon.  We went to Nanny and Pa’s and stayed for tea.  Afterwards Nanny took me home as mummy’s gone out again.  Once home we discovered that mum had accidentally turned the heating off and the house was freezing.  Not that I minded much as it meant I got a cuddle, under the blanket, with Nanny on the settee.

2019: So glad I have a recovery day today.   I literally feel so exhausted all the time since I’ve been having my infusions and trying to balance and juggle life is so tough at the moment.  Its so hard to get the motivation when you are not all there. I think this is where my forgetfulness comes in as well as brain fog. I’ve always been forgetful but lately its just getting worse and worse. I think when I struggle with my mental health, I have so much anxiety that my brain just cuts out anything that’s actually important

.#children #parents #gardening #crohns #mentalhealth #infusions #anxiety #music 


November 6th – Santa For Christmas?

1999:  Mummy had her nails done again his morning, which was all a bit boring.  When she was finished we headed straight for Aunty Eesa’s as I’d decided I didn’t want to go swimming.  We had lunch and all played in the garden which was great fun.  The only problem today is that somehow, someone keeps wetting my trousers.  We went to Asda where we saw Nanny demonstrating Christmas cake – yum, yum.  Later, once home, Nanny called round for a cup of tea and afterwards mummy and I had some pasta and then my bath.  I fell asleep on the settee just as a lady called Leah came in and the next I knew it was 1.30, I was in my bed, but rudely awoken by loud voices downstairs.  Bloomin’ adults, I wish they’d learn to keep the noise down.  I bet mum’s been out with that Martel guy again!  Anyway, I was allowed down for my bottle of milk and then back to bed and sleep.

2019: Infusion day. 3rd loading dose in 5 weeks and I have gained another 5 kilo = 98 kg! Not sure if this is the stopping smoking and craving food or the infusions but perhaps I could get a part time job as Santa this year?! Still its better than being underweight and looking like a skeleton. Generally I’m feeling good, just tired from the loading doses, but I think I have found what is good for me treatment wise

#crohns #children #parents #granparents #christmas #infiximab #infusions #pottytraining