Raffle Donations

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).

The Countdown is on…….. Wednesday 15th August 2018

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.

We have started Biological

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.

Imogen showing Sarah her Princesses and having her 1st Humira Injection.

Eyes Beautiful Eyes…..

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.

Cheeky smiles!!

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.

Clara and Imogen meeting for the first time at NNUH.

Suffolk rocks and Imogen’s Wish….

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.

Monday Breakthrough

So we have had a little bit of a breakthrough with Monday medicines, which as you know from a previous post Imogen HATES!!!

The condition being that she wants to do a video so she can show everyone how good she is…… and watch herself on repeat of course 😂

So if you want a giggle and to see how good she is of course watch our mini entertainer below 💓

Stalls Available…..

Do you make and sell crafts, gifts, or have something you wish to promote?

If so we have stalls available at our Imogen’s Wish Charity Fun Event on 15th August at The Seagull Theatre, Lowestoft. It’s going to be a fun family afternoon raising awareness for the condition Juvenile Arthritis and also vital funds for the charity JIA at NRAS.

Stall space will be outside, however to account for all weather conditions gazebos will be in situ. Spaces are limited and stalls are on a first come, first serve basis.

£8 per stall (plus we would like stall holders to consider donating a small raffle prize)

All proceeds from the event go to Imogen’s Wish Charity Fundraiser for JIA at NRAS.

So spread the word and come join in the fun.

If you are interested in booking a stall space please contact us ASAP…

Email: imogenswishjia@gmail.com or contact via Facebook.

Thank you for your support 😊

ENT…..stage 2 complete

So last week Imogen finally had stage two of her ENT investigations. We were up early and off to the Norfolk and Norwich for a scheduled Laryngoscopy and Airway Endoscopy. Obviously due to her age they decided it would be best to do this under a general anaesthetic, so we had already completed the pre-op checks a couple of days previous.

Imogen made herself at home within minutes of being shown to her bed on the ward, the bag was unpacked and she had to introduce the nurses to all of her princess dolls bless her. Luckily because she was the youngest on our bay she was scheduled to be the first on the afternoon list. So we hit the toy cupboard to pass some time and a few puzzles and books later the nurse came to put her ‘magic’ cream on her hands, it’s scary how quickly things can change when someone is scared. Imogen went from chatting, singing and entertaining the bay to hiding in her bed, not moving and getting quite distressed, the crazy thing is with Imogen she has things done at hospital all of the time and is so brave but anyone mention the word plaster or attempt to put one near her and she freaks out BIG TIME!!!

I think it’s a fear that has stemmed from her first ever blood test and it will be there I’m sure for a long time to come. Poor little luv had the cream on both hands and it was all going really well until those big sticky pads went over the top, then that was it Imogen disappeared. I literally had to sit on her hospital bed with her and cover her hands with mine so she couldn’t see them, and that’s how we remained until they fetched us for theatre. The only time she moved was to go to the toilet but she held her hands out as if she couldn’t move her arms, bless her little heart.

So both Imogen and her best comfort teddy Bambi were tagged up and ready to go. Lucky Mummy got to ride around the hospital on the bed with them both, whilst Daddy followed with the bags behind us. When we reached the anaesthetic room I was pleasantly surprised how easy and relaxed this part was. The last time Imogen went under anaesthetic I literally had to wrestle her very distressed body and hold the gas mask over her face until she went floppy, it was torturous. This time it was a totally different experience, the anaesthetist was fantastic he sat Imogen on my lap and she watched pepper pig on a little tablet whilst he stood behind gently cupping his hands and the tube under her chin so she wasn’t really aware that she was slowly breathing the gas in, and his hands slowly closed tighter. He did warn us that she might kick out a little as the gas starts to take over, which she did but it was very was calm and peaceful and she looked up at me for reassurance as she went to sleep. I just carried her to the table and then we were given our buzzer which would go off once she was back in recovery.

needless to say it was a long hour or so later after a quick sandwich and coffee that we met Imogen in recovery, she was sitting up and ready for a Mummy cuddle. The only problem we had was stopping her pulling at her cannula, she kept saying it was hurting her and trying to pull it out, so we had to try and distract her. She did extremely well so before we knew it we were back on the ward, she was still very drowsy so thankfully had a nice long sleep.

Once she woke up we ventured into the play room. The lovely play specialists recognised her from previous visits and remembered her love for Princesses, the next thing they had printed off Frozen colouring pages for her to take home and she was busy playing with all the toys in the playroom so it was just what she needed. Luckily for us it wasn’t too long before the Drs came round to see us, and they were very pleased with how the procedure went. She did well under anaesthetic and they were pleased with the results. The only thing they found were slightly inflamed vocal cords which should right itself over time. It would appear that our Imogen uses her voice too much and in the wrong way I.e. shouting and grunting haha 😂 they said some children do this whilst young and they should grow out of bad habits and realise that they don’t need to be quite so loud. Anyone who is close to Imogen will find this quite funny as she is always trying to entertain and perform to anyone who will show an interest.

So as long as she had a drink, food, went to the toilet and obs looked ok she would be allowed to go home. Luckily being starved since 7am worked in our favour and she was hungry so managed to eat a little sandwich, her throat was dry and a little sore so she wanted plenty to drink and needless to say after two fruit shoots and some squash she had countless toilet trips. Once the cannula had been removed we packed up our things and set off for home feeling extremely relieved and happy that things had been so positive and for once there were no further treatments or complications.

Imogen recovered very quickly from her anaesthetic, she had a little bit of a cough and rough throat for about 48 hours but other than that has been absolutely fine since.

She should be due to have one more test which is a echo scan so nothing too invasive and then we will go back for a review in approx 3 months time. So the great news is that she will now be ok to start her new treatment from the Rheumatology team very soon.

I know they probably won’t see this but I just have to Thank the nurses, anaesthetists, doctors, play specialists and just general hospital staff that we came into contact with during our visit, they were all fantastic and go above and beyond to ensure your little person is happy, relaxed and looked after. Tremendous people each and every one!!!