Heart family fun at Cliveden

One of the highlights of half-term for Jessica and Sophie was our day out at Cliveden with another heart family.  Jessica and P first met at the heart ward Christmas party and quickly made friends with each other. They are around the same age as each other (P is a few months younger) and both have similar heart conditions.

Sophie, P and Jessica walking hand in hand towards the lake at Cliveden. "Heart family fun at Cliveden"

With Jessica’s heart condition, the left side of her heart is underdeveloped. With P it is the right side. Both conditions are managed through a series of three surgeries. These replumb the heart to help it work more effectively. The Fontan procedure is the final planned surgery. This is the one that Jessica will need to have in the next year or so.

Jessica and P sitting by the stream

P had her Fontan at the end of last year. It was interesting to see the difference in energy levels between her and Jessica. What is most noticeable is just how pink P looks compared to Jessica. The Fontan procedure helps to increase the amount of oxygen that the blood is able to pick up. Jessica’s blood oxygen levels run at around 80% which is much lower than normal. This is the reason why she goes so blue. Having to function at lower blood oxygenation levels also affects her energy levels. On the whole, Jessica copes really well but there is a noticeable difference between her and her peers.

Jessica, Sophie and P in the centre of the maze at Cliveden

It was lovely to see Jessica and Sophie’s look of delight when they first saw P again. The three girls headed off hand-in-hand and made a beeline for the maze. We hadn’t explored the maze before and I think we probably took an interesting route through it but we found the middle and our way out again without too much trouble!

Jessica and Sophie on the seesaw at Cliveden with Daddy helping to push it up and down

We spent the rest of the morning in the play area where Jessica, Sophie and P had a lot of fun while hubby and I enjoyed chatting to P’s mum and dad. The play area at Cliveden is such a good one – there are lots of things to explore and the seesaw is a nice big one so that several children can go on it at once.

Sophie and P sitting on a big wooden chair in the play area at Cliveden

After a break for lunch, we decided to explore some more of the grounds. Jessica wanted to have a ride in P’s buggy. It was a good opportunity for us to try out a disability buggy as we’ve been considering getting one for Jessica. She’s really outgrowing the buggy we’ve had since she was a baby but longer walks can be a struggle for her. We often manage without it if we’re out as a family. A ride on Daddy’s shoulders is usually an option when she is tired. However, if I’m out for the day on my own with the girls, I will often bring it.

Jessica wandering near the bamboo at the lake at Cliveden

Jessica’s exercise tolerance will reduce as she gets closer to needing her next stage surgery. A proper disability buggy designed for an older child would be a better option than trying to manage with the buggy we have now. Plus Sophie can also sit on the footrest and have a ride too!

Jessica riding in P's buggy with Daddy pushing her

I think most of the ride in the buggy was due to the novelty factor though!  Jessica had enough energy for a paddle in the stream with P and Sophie! She also quite enjoyed pushing P and Sophie around in the buggy too, although did start to tire by the end of our walk.

Jessica sitting down for a rest by the stream

Jessica pushing Sophie and P around in P's buggy

The girls had a wonderful time with their new friend. We are looking forward to hopefully catching up again at Easter. For us, it was lovely to spend time with another family who understood the journey that we are on. A moment of not being different, not being judged, not needing to explain things. Not to mention getting to see two little miracles enjoying time together just being normal, happy little girls. These are the kinds of days out that make for the most magical memories.

Jessica and Sophie giving P a big hug

Country Kids from Coombe Mill Family Farm Holidays Cornwall

26 thoughts on “Heart family fun at Cliveden

  1. We’ve never been to Cliveden the playground looks fantastic! Your kids look like they are having a whale of a time, what a lovely meet up. #CountryKids

    1. It’s a lovely place to explore – we’ve been a few times and the girls love it there 🙂

  2. It must be such a joy for you to see the children interacting together. How reassuring for you to see P that next stage on too, it must give you such hope and faith in the medical profession. Fingers crossed when the time comes that Jessica’s next stage of treatment shows the same progress. The mobility buggy does sound like a sensible idea. I can see why this was one of your favourite days of the holiday.

    Thank you for sharing with me on #CountryKids

    1. It is reassuring to see how well P is doing now – fingers crossed Jessica will be the same after her op too. Lovely to link up as always, thank you for hosting 🙂

  3. Aww how lovely, it sounds like you had a brilliant day. It’s great that Jessica has another little girl so close in age to her who is going through the same thing. It’s lovely to see Sophie getting involved too, my little Lia is starting to get involved with Libby and her friends now and it’s lovely to see their confidence developing.

    1. Thank you Nat. It is lovely when the little ones join in too and they can all be friends together 🙂

  4. What a lovely photo of the 3 of them at the end. Must be lovely to be able to get out compare notes/not, and have the girls with someone else who’s been through the same thing #countrykids

    1. Thank you Emma. It is good to have that time with another family who’ve had similar experiences and lovely for Jessica to have a friend who understands too 🙂

  5. All three of the girls look like they thoroughly enjoyed themselves. What a great place to explore there plenty to keep little people busy.

  6. What lovely photos and what special days for the girls. It is nice that she has a friend that has a similar heart condition – they will no doubt be friends for life 🙂 thanks for sharing xx

    1. Thank you. It is lovely for Jessica to have a friend who has had a similar experience to her.

    1. Thank you Karen. It is lovely to have that support and build friendships with other heart families 🙂

  7. I had no idea about the blood oxygen levels. When will you know about the next round of surgery? Looks like they all had a great time togther. Xx #CountryKids

    1. Thank you – they did. We probably won’t know when the next surgery will take place until shortly before it happens if our previous experiences are anything to go by.

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