Little challenges

The last few weeks have been all about completing various challenges.  We’ve been hunting for the different Shaun the Sheep sculptures around London and Bristol and have managed to find all 120 of these.  Jessica has loved finding all the different sheep and is quite addicted to the iPad app for finding them – she loves to flick through the pictures of all the sheep we have seen and name them.  

We had a lovely family holiday on the Isle of Man where we managed to find our final Olympic gold postbox and complete the challenge that Jessica’s godfather Bryan set us nearly three years ago.  It is lovely to look back on all the photos of the different postboxes and see how our family has changed and Jessica has grown up in that time.  Jessica enjoyed her holiday very much – she had fun building sandcastles on the beach with Sophie and enjoyed going on the mountain train, steam train and horse-drawn tram.

We had a community nurse visit the day after getting back home again and were a little concerned that Jessica’s sats were lower than usual at around 74-75 (she is usually around 79-81) and after discussion with the cardiac liaison nurse at Oxford, we were asked to bring Jessica in for a check-up the next day.  Thankfully all seemed to be well with Jessica’s heart function on her echo and her sats had come back up to normal levels so the team are happy to continue with the present plan to monitor with no intervention planned for this year.  Jessica also had a chest X-ray which we are awaiting the results of.  She got a certificate for being very good at standing still and having this done (and Sophie also got a certificate for waiting patiently while Jessica had her X-ray).  Our next planned appointment is at the beginning of next month but if all is well with the chest X-ray then this will probably be moved back.  

Otherwise, Jessica is doing well and continues to be a very happy and active little girl.  She is starting to get quite excited about her birthday next month and tells us every day that “it will be my birthday soon!  I going to be 4!”

It is the little blips like we have had this week that remind us again of the reality of Jessica’s heart condition and the need for future surgery but to hear her chattering so excitedly about her birthday makes us realise again just how very lucky we are to have her.  The last four years have gone by so very quickly – sometimes it seems that it was really only yesterday that she was a tiny baby and now she is getting to be quite a big girl. 

CBeebies Land, challenges and community nurse checks

We’ve had a lovely few days away as a family recently and have ticked a few more of the Paralympic gold postboxes off the list now – bringing the total up to 33 Paralympic gold postboxes.  We were originally hoping to finish off the Olympic ones with a trip to the Isle of Man but unfortunately couldn’t get a ferry crossing for the dates we were going away so will have to do that one another time.  Jessica and Sophie have been enjoying their trip around the country – this time taking us to Norfolk, Lincoln, Nottinghamshire and the Peak District and around Birmingham.  

Whilst we were away hunting the gold postboxes, we also took a trip to Alton Towers and Jessica and Sophie particularly enjoyed their day at CBeebiesLand.  We got to see Mike the Knight, take a boat ride and see the In the Night Garden characters, ride in Postman Pat’s van and visit Mr Bloom’s Allotment and had a fabulous day out.

Our other challenge for the summer has now come to an end as we have now found all fifty of the book benches around London.  We’ve really enjoyed exploring various areas of the city whilst doing this although our final trail around Bloomsbury was an unexpectedly emotional one as it took us around the vicinity of Great Ormond Street Hospital.  It brought back a flood of memories of that day where we were told that Jessica’s chances of survival were incredibly low as two of the book benches were situated very close to places where we stopped and made phone calls and generally tried to get to grips with the devastating news we received that day.  The photo below is the bench where we stopped to call close family and friends – what a blessing it was to be there with Jessica more than three years on, knowing that we were given the miracle that we prayed for that day.  Thank you God for answering our prayers that day – we know how very, very lucky we are.

It is amazing to think that in less than a week, Jessica will be three years old.  That time has gone by so very fast and it is wonderful to see how Jessica has grown and developed and become such a wonderfully happy chatty little girl.  She had her check-up from the community nurse today and is continuing to do really well  - her sats were in the mid 80s again which is very good for her, and she has had a little growth spurt in the last couple of weeks and now weighs in at 13.25kg.

 

It has also been a blessing to have recently met another heart family who live in our village and to be able to get together with our children and share stories and concerns.  The community of other heart families that we have got to know during this journey and the love and support of all our other friends and family has really been what has helped keep us going at times – thank you all for being there for us along the way.

First holiday abroad

 

We have been enjoying our first holiday abroad as a family – a road trip around France, Monaco, Italy and Belgium with a trip to the Channel Islands thrown in too.  Here’s a brief summary of our holiday in numbers:

12 days

5 countries

6 ferry crossings

9 hotels

60 hours of travelling (49 by car, 11 by boat)

2113 miles of driving
 

Jessica coped fairly well with all the travelling about – downloading her favourite CBeebies programmes onto the iPod helped out quite a lot with this although we discovered very early on that her favourite programmes are no longer what we thought they were – Mr Tumble is out and Mister Maker is in. It meant she ended up watching the same three episodes over and over quite a few times but it made some of the longer drives much more bearable for her.  Sophie also coped quite well with the travelling (mostly tending to drift off to sleep during the journeys despite Jessica’s best attempts to wake her up by prodding her with various toys!)

We have visited our penultimate Olympic postbox on Sark and just have the Isle of Man left on the list now.  Our journey to Sark from France involved four ferry crossings and much juggling to get two small children, several bags and a buggy down some rather narrow gangplanks and steep steps!  Somehow we managed it – and we had a lovely day on Sark exploring the island.  Jessica enjoyed being able to run about without having to worry about cars and had a ride on a horse and cart which was fun.

Whilst we were in France, we visited the Bayeux Tapestry, saw the start of the D-Day 70th anniversary commemorations in St Mère-Eglise, visted Château de Villandry, crossed the Viaduc de Millau and visited our friends Simon and Jo in Aix-en-Provence – who got to meet Jessica and Sophie for the first time.  Jessica dipped her foot into the sea at Cannes but wasn’t too impressed about it although she did enjoy the ‘big bath’ (otherwise known as a swimming pool) in the hotel in Aix-en-Provence although couldn’t stay in it very long as the water was unheated and a bit on the chilly side.   We took a trip around the Formula 1 circuit in Monaco, stayed overnight in the Italian Riveria and then headed back to France (with a final overnight stop in Belgium) before we got the ferry back home again.  

The weather was very hot for the second half of our trip (reaching 40˚C when we were in Dijon) – thankfully there was air conditioning in the car and the hotel and Jessica coped well with the heat (we made sure she was well hydrated and she also got to enjoy lots of ice cream to help keep her cool too!).  Jessica discovered a packet of chocolate rice cakes in a bag in the back of the car at one point on our travels which she proceeded to open and eat – covering herself and the car seat in melted chocolate (and then before we had a chance to clean her off properly, threw herself on the nice clean white sheets on our hotel bed and covered them in chocolate too!)  She also had to manage without her glasses for most of our trip as there was some minor damage to them (which got fixed after we arrived home - somehow holidays seem to be the perfect time for these things to happen!)

Jessica has been a little subdued since getting home as she is full of cold and has also come up in a bit of a rash on her legs and arms – the doctor has diagnosed a virus and prescribed some cream to soothe it – hopefully it will disappear very soon and thankfully doesn’t seem to be bothering her too much.  Otherwise she’s been enjoying being out and about in the sunshine and got her face painted for the first time today (which she loved) at the local infant school fair.

 

Stepping out on holiday

We have just returned from having ten days away, firstly travelling to Southampton and Bristol to visit friends, then spending five days at Butlins in Minehead followed by a couple of days in Cornwall for a couple of days before coming home via Poole and Shaftesbury where we visited some more friends.  Unfortunately she has had to manage without her glasses for the last couple of weeks as Mummy accidentally broke the frames and we are still waiting for the replacement frames to arrive so they can be mended.

 

Jessica has been thoroughly enjoying herself – particularly the few days we spent at Butlins.  She got to meet Angelina Ballerina and Pingu (and was a bit upset at having to say goodbye to them after having her photo taken!), has been enjoying the various rides in Bob The Builder’s Yard and has had fun exploring the soft play area and the sensory room in the nursery.  She also enjoyed a little dance with Daddy at the tots’ disco and the parent and toddler swimming sessions.

Whilst travelling around the country, Jessica has also visited a few more gold postboxes taking the total of Olympic ones visited to 46 (out of 64) and Paralympic ones to 13 (out of 46). 

The highlight of our holiday was our last day when Jessica suddenly got the confidence to start walking on her own.  She has been doing a couple of very wobbly steps here and there for a while now but clearly spending lots of time walking whilst holding Mummy or Daddy’s hand during our holiday helped her confidence because she is now taking quite a few steps on her own.  She is still a bit wobbly on her feet but is so very proud of herself for being able to walk by herself and it is a delight to watch her.

We had a visit from our community nurse just before our holiday and Jessica has regained the weight she lost last month and is back up to 10.24kg (22lb 8.5oz).  Her sats are staying in the low 80s so all seems to be well at present.  She is due to have another check-up at Oxford at the end of the month and hopefully this will continue to show that her heart is functioning well.