the workshop was today!

lare73

hello, hello, hello, )
firstly, i must explain my absence - busy busy and bloody busy, i have not had a minute, but i hope all thats going to change for a few weeks

tom is doing great at the mo (fingers firmly crossed), his inflammatory markers have come down so it looks like the arthritis has calmed down somewhat, which is great as he was very sick with it. the last 3-4 weeks he has been more like his old self, which is ace. he still hates medicine fridays, but he is coping with the side effects, his withdrawal from steroids is taking some time.

also, the 'juvenile workshop' happened today, can i say a massive thank you for all those that managed to get there, the weather did not help so numbers were less than expected but still think the day went well. the rugby players were perfect gentleman and i think inspired some of the children. also, thank you to those that have offered your time and services for further events, its really appreciated.

i hope everyone is coping with this cold weather, tom has had his flu jab (which made him ill!!!!!!) so hoping the germs dont stop at our house.
keep safe and warm
clare xxx

dreamdaisy

I am so pleased to hear that it went well, despite the poxy weather! Your hard work over the past few weeks and months has, hopefully, been well-rewarded and I hope that everyone really enjoyed themselves.

I am glad to hear that Tom isn't too bad at the moment: God knows this rubbish has its ups and downs (yeah, I know, mostly downs) but if he has had some respite from it all then that, surely, is a good thing. Coming off the steroids is a slow process, but in the long-term it is the better option. It's lovely to hear from you again, lare: I hope you all keep well in the run-up to Christmas, and have a lovely time. DD

anniesmum

Hi Clare,
Just want to say a massive well done and a huge thank you to you, Clare for organising the workshop. We were really pleased we went along and do feel we got something out of it - more information and meeting other people in the same boat does make a difference. It was a great atmosphere and I was so impressed that the LGI Rheumotology team were there - it was really supportive and very kind of them.

By the way Annie is so delighted with her Mickey Mouse and he is going every where with her at the moment. The big two were also very chuffed to be included in the Father Christmas pressies.

So thank you Clare - your hard work has paid off and has made a difference to us.

With lots of appreciation,

Lucy xx

littlemummy2

Hi clare, so glad that the workshop went well, i was one of those that wasn't able to attend, for which i apologise, phoebe is having a few more off days at the moment saw Dr harvey at pinderfiels on the 9th, and they are putting her back on mtx. They said that they found something on her left hip even though the letter i got said all was clear. So we don't know whether we are coming or going. When are you going tp be holding another one? Would still love to attend.

Again many congratulations on your successful day

Michelle x

Alice's mum

Hi Clare

Thankyou for taking time to organise the event especially at this very busy time. Our family certainly came away much more informed and thought it was so lovely that the rheumatology team took time out to attend. Alice's brother and sister have a much better understanding of her challenges after speaking to the young lady you introduced us to.
Thankyou very much.

lare73

hi everyone, firstly thank you for the kind replies and feedback for the workshop, the hard work was most definately worth it.
secondly, apologies. i have not been on the forum for a few weeks, i have had swine flu, been unwell and generally rubbish, tom luckily had the dual flu jab before christmas and seems to have escaped the flu. he has just started with a cold, which in turn has given him terrible mouth ulcers, lots of bruising (which we are closely monitoring) and some fatigue. fingers crossed it wont get much worse.

i am planning a meeting next week to get a fund total, and to decide the next project, then the plan is to get in touch with families wanting to fundraise and swap details, all very exciting and hopefully get the awareness raised again, the newspapers and radio proved very productive for the workshop so will continue to use the media for future events.

hope all your children are doing ok, and the cold isnt having too much of an impact.
off to catch up on all the posts... may be a while :shock: clare xx