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 💓
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 😊
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!!!
A Huge THANK YOU to the Hatfield Hotel, Lowestoft for holding a charity coffee hour on Monday 9th July. We had a great time and all the team made us feel so welcome.
I am delighted to announce that we raised a total of £95.00 which I am sure you will agree is fantastic, given that it was just a few hot drink sales within that hour.
So last week we got a phone call that we had been expecting for a while.
If you read my first blog post explaining the start of our journey, I touched on Imogen’s breathing / throat troubles that were initially picked up by the Drs when she went under anaesthetic, for her joint injections in December. We went to see a ENT specialist a few months back who on receiving letters from our Rheumatology Drs and hearing about Imogen’s symptoms decided it would be best to investigate further with a camera down her throat. Obviously the fact that she is so young means they won’t even attempt this without her being put to sleep under a general anaesthetic.
However to do this procedure for Imogen it requires three different specialists on the day, so it has taken quite a lot of organising. The call was to confirm we now have a date of 10th July. Which is great for Imogen that it will finally be over, but makes me feel extremely anxious. It’s just the unknown I guess, and the fact that we have to battle through the hospital admission, more needles and seeing her put to sleep again.
But as I always remind myself with these things…..it’s for the greater good, it needs to be done.
Therefore Monday this week we set off bright, early and blurry eyed to the Norfolk & Norwich for Imogen’s pre-op appointment. She was hilarious as ever and had all the nurses and Drs in stitches, showing off with her singing and performing.
Infact I think the funniest moment was when she was having her obs done and the lady needed to do the groin and nose swabs for MRSA. Well Imogen look horrified by these long ear buds, so the very kind nurse tried to make her feel better by explaining they just go inside your nose to check you don’t have and bugs. Imogen’s face changed and she corrected her straight away;
“I don’t have bugs up my nose, they live on the grass in my garden” 🤣😂🤣😂🤣😂
She also went on to tell the Dr that her Mummy is a chubby chops….thanks Imogen 🤨
Everything appeared to go well, so unless we hear otherwise we will be back next Tuesday 10th for the procedure 😬 fingers crossed everything will be straight forward with nothing to report but I will keep you posted.
Oh how these weeks fly by so fast, every Friday we say the same thing!
But what a difference each week makes.
Friday in our house is Methotrexate injection day, Imogen started this drug back in January 2018. To think that when we started giving her these injections it had to be in hospital with us wrestling her to keep still, through the shouting and tears. Now less than 6 months on and we administer the injection at home, she doesn’t even have to sit on mummy’s lap anymore she is amazing.
She has even started to get excited by the process because we have given her ownership of getting the gloves and bits out ready, it’s like playing Drs. She then climbs up on that chair and sits still and calm throughout the whole process.
I just can’t help but share this little clip with you from this morning to show you what I mean….. just LOVE the signature “Imogen Jiggle” at the end bless her.
Well I have never been so touched by the kindness and generosity of a young individual as I was a few days back, when through our door we received this!!!!
Thank you Jasmine, you are a true kind sole and this really means more than anything to us all. It really is such a worthwhile thing we are doing and this just proves it!!!!
Much love xx
The leaflets and posters have been collected from the printers and I have been busy writing to local businesses and organisations about our charity fun day in August.
If you would like more information or have any contacts or prizes you would like to donate to our children’s and adults raffle or new/nearly new soft toys for our teddy tombola please get in touch by emailing: Imogenswishjia@gmail.com
Hubby has been a god send with delivering these so I am sure he will happily collect anything you would like to donate.
Well a huge thank you to all our local friends, family and supportive public who voted for Imogen’s Wish for JIA@NRAS. It turns out we won The Hatfield Hotel’s “coffee hour” fundraiser which will be held next Monday 9th July between 11am and 12pm.
We hope to see lots of you there and for that hour they will donate their takings from all hot drinks sales to the charity fundraiser.
#giving back #community #coffeehour #imogenswish #juvenilearthritis #kidsgetarthritistoo
How fantastic is this…… we hope you can all join us
Imogen’s Wish 