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 

November 4th – Its All a Mix UP!

1999: Up at seven and we were lazy  again.  I reminded mummy of her pottery car and plant that I bought her yesterday with my own pennies and she says it’s lovely and very special.  Toddlers this morning but when Edon went to get her coffee I cried and decided to cling – I didn’t want to risk her going anywhere without me again.  Have been in a lovely mood all day, which seemed to make the biguns cheerful.  I gave mummy a big hug when she came to collect me and got nicely into the car without any fuss.  We had pasta for tea and then cuddled up on the settee with strawberry milk!  I was starting to drop off when I saw Uncle Terry on an advert for a show – I was very excited, but fell asleep cuddling mum a while later.

2019: Off today for infusions – only to find its not today – its Wednesday. Not a great start to the week as all planned to do my health and safety training for working on site tomorrow at midday but now have to go into work today and tomorrow and throw £21 down the drain and reschedule. Then need to take Wednesday and Thursday off instead for infusions and recovery with a formal absence meeting already pending and redundancies. Just hope they take anxiety, depression and Crohn’s as the disabilities they are and not random sickness ……

#children #parents #childminders #crohns #mentalhealth #infliximab #toddlers #cuddles

October 9th – Infusions and Allergies

 

1999 – I chose to go to the Farm today instead of swimming, but first we had to wait for mummy’s nails to be done (actually they’re not really hers but I wont tell).  I got very bored with all the hanging around lark and after showing off for a bit I fell asleep on the settee.  An hour later I woke up and as soon as I did I remembered the farm.  Unfortunately we had to go via Asda which didn’t turn out so bad as we saw Nanny and then Pa and I got to eat yoghurts, fruit and a whole bag of Jelly Babies.  Eventually we arrived at the farm and for once I went straight to the animals.  We saw 4 lambs which had just been born today and lots of piglets.  I had a horse ride, played in the park and showed off in the ball pit by diving head first into it – with a captive audience of course!  I played in the garden when we got home and I painted a blue stripe down my car and blue lights on top.  There – my very own police car.  I was also covered in paint and mum eventually conned me into having a bath by saying we would do some “magic” and make the paint disappear with water.  It worked – we can do magic!

2019: Hopefully the magic of Infliximab will start working soon. Second infusion today. Mark took me to the hospital so mum could have a lie in and she picked me up after. I decided to then go straight home to bed rather than sleep at theirs. For the first time ever I have developed an allergic reaction to the sticking plaster.

#MarshFarm #animals #nails #crohns #inflixamab #police #kids #parents #allergies

September 9th – A Spoonful of Sugar Helps the Medicine go Downstairs

1999: All the nines this morning – not so with the time though – up at 6.30 bright and breezy.  Off to Edons.  Went to toddlers this morning and proudly told everyone I’m going to “playschool tomorrow”.  Mum collected me from the swimming pool where Hayley and Dan were having their lessons.  We had cold chicken for tea; I had my hair cut and a bath and was asleep by six on the settee

2019: Got in from the airport at 4.30am. Had a few hours sleep at mms and then off to James Paget Hospital for Barium.  Had to keep going back in for more x-ray. Not sure if bad pictures or more bad news but nothing was said. Then onto see the IBD nurse who has advised I should be in for Infliximab in the next few weeks. Meanwhile mum was at home with Zof giving a teaching session on Crohn’s, autoimmune, immunosuppressants and sepsis! Mum has also heard of stem cell treatment for Crohn’s but they need to obliterate the immune system with chemo first and then reset it with stem cells. Mums not too optimistic about this but to be honest Id be happy to do any trials if there is a hope of a cure. For more info on Crohn’s and Colitis and Infliximab go to www.crohnsandcolitis.org.uk

And when I got back to mums ……. I fell asleep on the settee with Zof. Well mum was subjecting me to the ruturn of Mary Poppins (but I will take the DVD home 😊)

#mums #toddlers #sleep #crohns #IBD #infliximab #stemcelltreatment #chemo #movies