Thanks so much to Excel Driver Training Limited for all their constant support. Today was a really special day seeing a long term donation come to fruition !

Excel are always coming up with ways to support the charity and this was a really special prize they gave away for so many reasons

Richard and his team became our only regular income throughout the pandemic and continue to fly the flag ❤️ daily and ensure donations are made weekly. Make sure you follow them to be part of their next giveaway and if you know anyone who will be learning to drive in the coming years get their name down! ⏳📱check out their Socials and see and see their amazing 1st time pass rate 🥂❤️💙🚗 ✅📈

And we’re live! Tickets for this years 1 Mile Run are now available on our website. Join us on Sunday 7th May for a day of family fun and raise some money for a great cause. https://bit.ly/ktbmile23

Tickets are now live for this years KeepTheBeat Mile. Join us for a great morning of fun and fundraising ❤️💙 https://www.keepthebeat.co.uk/event/keepthebeat-mile-2023/?mc_cid=06191b3c5e&mc_eid=6a30e8b71a

We are excited to announce that the KeepTheBeat Mile is back! Join us on Sunday 7th May at Bosworth Lakeside Lodges.

🎉🎉1st Time Pass Alert 🚨 🎉🎉

Congratulations Leah on passing your test this morning at Hinckley DTC at the 1st attempt. Leah came to Excel having previously felt she wasn’t making progress with her lessons. 11 hours later she felt she was more than ready for her test and passed. It was amazing to see her confidence grow behind the wheel and become a safe driver. Stay safe and enjoy your independence 🎉🚗🎉
Leah raised £11 for Keepthebeat 💙♥️

We are very lucky to have some people around us who have been absolutely amazing. They have looked after us, brought us food, kept us sane and messaged/spoken to us most days. One Pearl of wisdom I would pass on is, don’t expect help from the people you would expect it from, help will come from far and wide and in many forms. We are hugely thankful and grateful to these people and they know who they are.

Also don’t expect everyone to understand, we have had a lot of people say ‘I know so and so down the road, they had a hole in their heart too…’ we have taken to replying with ‘our daughter only has half a heart…’. People who you thought of as close will distance themselves from you, because they don’t know what to say or how to act. Give them space and they will come around in time, it is not their fault they don’t understand the gravitas of the situation you are going through.

Just focus on your little family.

Florence’s journey continues and I will continue to update you when it is appropriate. Should you wish to follow further you can follow Florence on Instagram @florence_and_the_heart_machine
Thank you for all your kind words and comments on these posts they have really helped us. 🙏

Leicester Royal InfirmaryKeepthebeatHeart LinkTiny Tickers “The Tiny Hearts Charity”Little Hearts MatterEast midlands Congenital Heart CentreBritish Heart Foundation

The care of the Nurses, Doctors and surgeons are second to none. Not only do they care, plan and look after Florence a huge part of what they do is the pastoral care of the parents. We have been very lucky that we have had the care of some amazing nurses who go out of their way to take their care to the next level! They know who they are and we couldn’t thank them enough 🙏. We have a special place for some nurses, because they have been an integral part of Florence’s journey. Her nurse from PICU who saved her life will always be dear to myself and Tom, we will be hoping he gets her after her next surgery too.
We decided at the start of this journey, that we didn’t want to be quiet and introvert, so at times we have a laugh and banter with our nurses has been an outlet for our stress, people may think that is strange but it is a coping mechanism. The nurses have become our extended family and Florence will have some many ‘Aunties’ and ‘Uncles’ from the hospital. As a long stay patient she gets to know everyone and anyone who walks pay goes and sees her (mainly for her big smiles!).

We have also made friends with some of the other parents who give advice, help you when it’s all too much, and are generally the only other people in the world who can really empathise and sympathise with what you are going through.

Leicester Royal InfirmaryKeepthebeatEast midlands Congenital Heart CentreHeart LinkTiny Tickers “The Tiny Hearts Charity”Little Hearts MatterBritish Heart Foundation

After her first surgery people assumed Florence was ‘fixed’, she unfortunately isn’t. Florence will be having at least a further 2 surgeries along with procedures as and when she needs them. We were told when we learned of her heart condition that the surgeries are only palliative care.

The next surgery Florence will have will be between 4-6 months and called the Glenn. This takes the superior vena cava from the heart and connects it to the pulmonary artery. Then when she is around 5 years old she will have another surgery called the Fontan. These are all extremely risky open heart surgeries and carry lots of risks, but without them Florence wouldn’t be here any longer.

Flo may also need a cath procedures where they go in through the groin to do any corrective surgery or look at pressures within the heart.
We will need to do lots of work with Florence around positive touch so she doesn’t associate touch with pain.

Leicester Royal InfirmaryKeepthebeatEast midlands Congenital Heart CentreHeart LinkTiny Tickers “The Tiny Hearts Charity”Little Hearts MatterBritish Heart Foundation

One of the hardest things we have found on this journey, is quite literally the monotonous journey into the hospital, followed by 30-40mins of trying to park then the walk from the car park to Florence’s bedside. Having nearly an hour taken out of your day that you should be with your daughter is ridiculous. Do that daily for nearly 100 days…it gets old! It’s crazy to think how much this simple act can actually affect your mental health. Everyday is ground hog day, we get up, sort the dogs, travel to the hospital, send the day with Florence, travel home, realised we have no food in the house, go Morrisons, cook, eat, feed dogs, sleep…repeat, every day.

Spending the day with Florence is the best bit of the day, if she’s happy and smiley then it’s wonderful, some days she’s not and if that is her desaturating her oxygen that means monitors going off, or if as she is at the moment she’s a grumpy because she’s teething…this journey can become all consuming.

Me and Tom are very lucky we have such a strong relationship that we talk a lot about how we are feeling. If we didn’t it would be a completely different outcome, from such an intense and traumatic experience.

Leicester Royal InfirmaryEast midlands Congenital Heart CentreHeart LinkTiny Tickers “The Tiny Hearts Charity”Little Hearts MatterKeepthebeatBritish Heart Foundation