Emily TinkerBell’s VNS journey 09/24

Emily TinkerBell’s VNS journey 09/24 Welcome to Emily’s VNS journey page, update’s on how TinkerBell is doing on this journey �.

Emily continues to go from strength to strength, growing so well and in everything she puts her mind too. We are on more...
20/12/2025

Emily continues to go from strength to strength, growing so well and in everything she puts her mind too. We are on more medication unfortunately for the time being while we still juggle the right setting for her VNS but we haven’t been able to reduce medication yet. Small steps we say.

I have copied my post from my FB for here…….

An early Merry Christmas wish to you all, 2025 has had its moments, good and not so good but we are all still together as a family. This Christmas I have donated to some very important and personal charities close to our hearts. Huntington Disease charity, Autism, Epilepsy UK, RAS STARS, Blue Cross, Kidney Research UK and then my usual invisible meals to certain food establishments for the homeless and family’s that need extra support this time of year. These choices have been in place of Christmas cards, thank you as always for understanding. Have a gentle Christmas with your loved ones, all our love 🥰 ###

21/06/2025

Good morning FB world. We hope this post finds you all well and coping in this heat!!

Well this week can royally f@ off! Like many of you it has been rather testing in this heat and my sense of humour has reversed out of the room, a rollercoaster of a week for both Emily and Sid. The VNS has most certainly been put through its paces and so far we are on top of it - just.

Emily as always has shone all the way through with her infectious giggles and even those tough hours, melted our hearts. I don’t know what’s up, down, left or right at the moment but going into the weekend we will just enjoy the sunshine, dance and get up to all sorts of shenanigans.

Happy weekend, look after each other and much love ❤️ x

What a holiday! I can’t say I’ve been thrilled about over two weeks for Easter holidays but the kids have had a blast 😊....
18/04/2025

What a holiday! I can’t say I’ve been thrilled about over two weeks for Easter holidays but the kids have had a blast 😊.

From swimming, bowling, beach stomps, kitchen discos, cinema, horse riding, bus/train journeys, wood hikes, family visiting and keeping mum awake ALOT……. It’s been amazing for them. Emily had a wobble in the holidays so we took a few steps back but we came back fighting. I won’t lie I need to go and lie down in a dark cave 😴!!!

Here are just some of our days/evenings of play with all we love. Please have a happy Easter weekend and we send all our love, always ❤️❤️❤️❤️❤️.

07/04/2025

A wonderful day celebrating our dancing monkeys 18th birthday from the weekend.

Swimming this morning with our Lauren, I have to show off that Emily swam a length of the pool albeit a short length and doggy paddle but WOW.

After a great afternoon with her Lauren and Sid they came home to an ABBA kitchen disco. To say I’m exhausted is an understatement but to have these moments is just magic. ❤️.

Short post that VNS is working its own magic and although small steps we are moving forward ###

Good morning everyone and happy Friday!Sorry we have been quiet but there hasn’t been much to report apart from Emily is...
14/03/2025

Good morning everyone and happy Friday!

Sorry we have been quiet but there hasn’t been much to report apart from Emily is doing amazing 😻. We have had some up and down days, the VNS was tested a lot last week and a couple of weeks ago all due to hormones and sickness but this is the journey right?! No hospital visits thank goodness. ❤️.

This week though we got to go somewhere and see someone special that we haven’t done for ages, it has to be at least last summer we managed to go and visit Savannah 🐎. Emily had the best time brushing, helping to feed her, brining her in from her field and riding her on a walk about the Orchard and to hear Emily use her voice to command Savannah was just priceless, we even had a voice change due to the VNS while on the walk about but nothing came of it, thank you Liz and Savannah for our special couple of hours 🐴 😘.

Couldn’t leave this post without a pic of her and Savannah and then getting home to warm up with a roast, Siddy being a cool dude with Daddy looking after him and helping prep while we were out and a snuggle for the moo of course!

Have a super weekend everyone ❤️.

Denise and her crew xx

Morning all, I hope this post finds you all well. Just a quick one from me.A very nasty virus hit our home this week, fi...
15/02/2025

Morning all, I hope this post finds you all well. Just a quick one from me.

A very nasty virus hit our home this week, first the kids and now me. High temperature, awful headache, shivers, aches and a chesty cough.

The VNS worked super hard Wednesday, I did at one point think we were going to hospital but I managed to get the temperature finally under control and the seizures and vomiting stopped (due initially to the temperature). I haven’t had to ‘swipe’ her VNS since Thursday but it has kicked in itself on numerous occasions, more so than usual daily.

I have also learnt that Emily cannot stomach ibuprofen, sickness number two! That is a big fat no no anymore.

Anyway the kids are on the mend, now to fix myself, anyone got a bottle of miracle out there 😂 ♥️.

Have a gentle weekend and half term, be kind and look after each other. Much love x

When some pink DM’s rock up for being a brave and happy girl….. nothing else matters 😂❤️
18/01/2025

When some pink DM’s rock up for being a brave and happy girl….. nothing else matters 😂❤️

Good evening everyone, we hope this post finds you all well.Just a little update as we went to the hospital today for ou...
14/01/2025

Good evening everyone, we hope this post finds you all well.

Just a little update as we went to the hospital today for our first VNS check. It blows my mind what data is held on this device that they swipe and upload for the consultants to analyse and share with us. To then be able to alter and tweak the levels, due to side effects and increasing to try and help with these seizures. As I’ve said before every two weeks it increases slightly but they went up a level on the base shock, they have also lowered the time from every 5 mins to 3 mins due to seizures and clusters that are happening, it’s all new and will still take a while before we have the levels right.

They told me that Emily is having at least 2 major seizures a day that the VNS is stopping, some smaller seizures/clusters and the occasional larger seizure are still sneaking through but we are focussing on the positive side of how well the VNS is working for Emily.

We have been told to keep an eye on two of the side effects with Emily which are jolting and swallowing especially when the wire is ‘live’, slightly concerned but all being monitored, we can’t ask for more than that.

I trust this team, they have cushioned my children and my family for nearly 22 years as they started treating Sid when he was months old, they are our medical family and I truly owe them so much, I think my hugs just aren’t enough 😂.

Anyways, Emily cruised the appointment today and we go back in 3 months unless anything wonky happens inbetween.

Much love to you all, be kind to each other and thank you for all your loving and supportive messages ❤️ ###

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