We will have a kids rock table at our event this coming Wednesday 15th August 2018, 12noon till 4pm. So if your kids are going mad for rock hunting this Summer why not come along and they can decorate a rock for our Imogen’s Wish Rocks competition.
(There will be a limited amount available on the day, kindly donated by Wickes Lowestoft).
I want to thank all of the local businesses who have been kind enough to donate prizes for our raffle next week. I want to acknowledge each and every one of you for your kindness, it means so much.
So in no particular order a big thank you to Atlas Theatre at Potters Resort, Hippodrome Circus, J.D Wetherspoons – Joseph Conrad’s, Zak’s Restaurants, The Norman Warrior, Toby Carvery Captain Manby, Iconic Bar & Grill, The Ship Inn, Tea by the Sea, East Coast Cinema, Marina Theatre Cinema, Thrigby Hall Wildlife Gardens, Africa Alive, Dinky Town, Adventure Island, Mattie & Mimi’s, Amy Louise Photography, Waveney River Tours, Easton Farm Park, Adnams Southwold, P.J. Gillman Jeweller’s, Tracy Jane, Little Bird, Salvinas Traditional English Sweet Shop, Wilko Lowestoft, Morrison’s Pakefield, The Red Rose Florist, Sense of Wonder, QD/Cherry Lane and Roy’s/Highways.
There are still prizes that are arriving so I am sure I will have more thank yous to post this coming week. And this is only a selection of the prizes we have there are more that have been donated and put together by ourselves, friends, family and also a selection of additional prizes for the children’s raffle and design a superhero competition (more details to follow).
Well everyone, it’s not long now until our ‘Imogen’s Wish’ Charity Fun Day at The Seagull Theatre, Lowestoft. So watch out for lots of posts and updates on our Facebook and other social media accounts over the coming days.
We really hope many of you will be able to join us on the day, there will be lots of family fun…. it’s not just for kids though, there will be stalls, raffles, cake sale and hot beverages on sale, with all proceeds going to ‘Imogen’s Wish’ fundraiser for JIA-at-NRAS. Lots of local businesses are supporting the day with raffle prizes still arriving and we honestly we can’t thank them enough, so let’s do them all proud by selling as many raffle tickets as we can to raise as much money as possible for such a worthy cause.
Raffle tickets will be available on the day but also in advance, please contact me for further details.
But remember it’s not only about the money for charity it’s about raising awareness of this condition and what these poor children have to go through to remain well. Sometimes all the outside world can see are the good days so they might think how can that child have anything wrong with them, but it’s all the behind the scenes hospital visits, and in our example……. blood tests, joint injections, eye tests, eye drops, methotrexate injections, Humira injections and everything in between that help fight the disease to keep them this way. Not to mention the fact that a flare can happen at any time and it can feel like your back to square one again.
So please, please help to support our campaign for ‘Imogen’s Wish’ to raise awareness and funds for JIA.
So Imogen has now started a new drug called Humira also known as Adalimumab.
Humira is a ‘biological’ drug and will be used alongside her Methotrexate injection which she has every Friday. This injection is slightly different in that it is a syringe injection rather than a pen device, and she will have this once a fortnight. So we are currently having the first few doses in hospital to learn how to do ourselves at home.
Last Friday Imogen had her first dose of Humira and she seemed to tolerate it pretty well with only a tiny bruise left behind on her leg. They do say that this injection packs a bit of a punch though and can ache for a few hours after the initial jab, so we will see how well we get on next time. I think with Imogen she is a tough little cookie as she doesn’t like to show it when things hurt but we have noticed she is really frightened of her usual injection now so perhaps it did hurt more than she let on. That’s the hard thing with kids, they are so resilient and we never really know what it feels like for them at this age. I kind of wish I could have everything she has done…. done to me so I know what she is going through.
The regular blood tests she has with go back to fortnightly to start with for monitoring and then resume to monthly to monitor any effects the drugs might be having.
This drug is supposed to be fantastic for treating both the joints and eyes but the true benefit from Humira May take several weeks to be felt or seen (2-12 weeks). So We have everything crossed that this helps Imogen a lot going forward.
So last week Imogen had her routine eye tests for JIA- associated Uveitis.
Things had been looking up on the eye front, the pressure in Imogen’s eyes had reduced and we had been slowly weaning down on the steroid eye drops…..until a couple of weeks ago when we noticed the symptoms of struggling in sunlight started to occur again! So it came as no shock when they found her eyes are flaring again. So rather than stopping the eye drops or weaning her off them, we are now upping the drops. Fingers crossed 🤞this will get the inflammation back under control and not cause her eye pressure to increase too much. I must say with this wonderful weather we have sunglasses in every bag, buggy and car we use.
But it wasn’t all bad news…….
On entering the eye clinic we crossed paths for the first time with the beautiful Clara. Clara’s lovely mum had recently been in touch only days previous via social media to introduce herself, after reading our post which had been shared on the JIA webpage.
Clara was diagnosed with Oligoarthritis JIA and Uveitis 3 years ago and like us their family aim to raise awareness of the condition and also funds for the charity JIA at NRAS.
The fact that we were both there for the same thing on the same day and time….. what are the chances?!?!? It felt like we were supposed to meet that day and I’m so glad we did. Between our appointments we managed to chat about treatments, side effects, symptoms and everything in between and the fact that Imogen had just started the drug Humira the day before which is the same drug that has worked wonders for Clara is so reassuring.
We hope to meet up with Clara and her family again during the Summer holidays.
So I am a few days overdue on posting but with the Summer holidays being so glorious for us and two amazing little girls, I have been trying to get them out and about as much as possible. We have been enjoying our stunning coastline which I have to say is Imogen’s absolute favourite destination. We have also been joining in the fun on #suffolkRocks so have been very busy painting and colouring stones to hide, some of which help spread awareness of Imogen’s Journey, Juvenile Arthritis and our blog posts. If you find one of our stones we would love to hear from you so please message us, email us or tag photos on our Facebook, Instagram or Twitter pages.
Well everyone I would like to try and encourage you to go out and buy a copy of The Lowestoft Journal today, failing that visit The Journal Online.
Imogen’s Wish 