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.

 

A busy couple of weeks

Jessica had her monthly check-up with the community nurse at the end of last week and her sats were up to 82 which is the best they’ve been for a little while.  Her weight was a little down from the previous weigh-in at 12.4kg (27lb 4.5oz) but she’s still following her centile line nicely.

We are now at the stage of having to be very careful about what we say as she is definitely starting to repeat lots of things now!  Watching her playing with her dolls and saying things like “Eat dinner, have cake… …then no cake!”, “don’t touch, be careful!”, “hello Sophie, nice to see you!” and my personal favourite: standing at the bottom of the stairs and calling “Get up Michael!”  We’re definitely starting to see all our little pet phrases coming right back at us!

We enjoyed spending time with other members of our church family last weekend when we went away on the church fellowship weekend.  Jessica and Sophie both enjoyed spending time with everyone there and it was lovely for us to spend time away as a family.  We took a little detour on the way home and visited one of the Paralympic gold postboxes in Oxford which brings the total of these up to 24 (out of 46)

Nanny came to stay recently and looked after Jessica whilst Mummy and Daddy took part in the concert at church which helped to raise £112.60 for Friends of PICU.  It was lovely spending a few days with Nanny and then visiting family when we went to stay with Nanny for a few days when she went home again.

We are looking forward to having our first family holiday abroad next month – going by ferry and car to the south of France to visit friends there.  We had to do quite a bit of phoning around though to arrange travel insurance for Jessica – we found the travel information leaflet and list of possible insurance companies from Little Hearts Matter was very helpful with this.  The lady we spoke to at the insurance company we finally went with happened to also be a heart mum of an 18 year old who was treated at Southampton by one of the consultants who we knew from Jessica’s time there!

  

Jessica’s story has recently been mentioned in the Children’s Hospital Network Annual Review booklet and we received a few copies of this in the post.  Mummy also wrote a guest blogpost last week for the Little Hearts Matter blog which shared some of our experience of how Little Hearts Matter have helped us as a family since Jessica’s diagnosis. 

Three years on...

It’s three years today since the appointment at Great Ormond Street where we were told that Jessica was unlikely to be suitable for surgery and our world fell apart.  In the midst of our devastation, we held on to one thing, the knowledge that God was bigger than it all and we prayed for a miracle.  Three years on and Jessica is here, bringing us so much joy and we thank God every day for blessing us with our beautiful little girl.

 

It has been a busy couple of weeks since our check-up at Oxford.  We have been catching up with Tany and Amy, enjoying trips to the park and afternoons painting pictures of “animals” as well as helping Mummy celebrate her birthday with a day out at Legoland.  Jessica had a lovely time and particularly enjoyed the play area in Duplo Valley.  She enjoyed all the walking around too and didn’t use the buggy at all whilst we were there.  We also had an eventful day out shopping yesterday with Mummy when we got trapped in the lift for 25 minutes (and seemingly unable to make contact with the outside world for the first ten which was quite scary) – fortunately though Jessica didn’t seem too bothered and was quite happy sitting on the floor in the lift with some toys whilst we waited for someone to get us out.

As always, she continues to be very happy and very, very chatty (latest phrase is “that’s better!” which gets used quite a lot!)  We are starting to see a few signs of sibling rivalry starting to emerge now that Sophie is getting more mobile and able to get at more of Jessica’s toys although most of the time they are still very lovely together and Jessica loves to give her baby sister cuddles and kisses (and then sit on her which is less good, but Sophie doesn’t often seem too bothered by this!)

Mummy, Daddy, Grandma and Auntie Marlene are taking part in another fundraising concert for Friends of PICU at church this weekend (Saturday 17th May, 7.30pm at Christ Church, Uxbridge) – more details are available here – please do come along and support us if you are able to.

Another cardiac check-up

Jessica had her cardiac check-up at Oxford today and we were pleased to be told that her heart function is stable at present although getting the echo done required much more distraction now that she is getting bigger!  Her sats remain around 78-80 and she is gaining weight with today’s weight-in (albeit fully clothed) being 12.46kg (27lb 6.5oz).  She is also getting taller – her height today was 84.2cm so she has grown 1.6cm since the start of the month.  With the visits being so spaced out now, the changes in her development become much more noticeable when watching her playing with the toys in the waiting room and interacting with the other children.  We saw a different doctor for Jessica’s check-up as her usual cardiologist, Dr Archer is currently away in the States and so her next check-up will be in three months’ time when we should see Dr Archer.

Jessica’s vocabulary is just growing day by day and she is becoming very chatty.  Our current favourite mispronounced words are ‘koala’ (ko-wa-wa) and ‘guitar’ (‘ghee-ha’).  She has now learnt how to count to thirty (although sometimes misses one or two numbers out) and her repertoire of songs is increasing – it is so lovely to hear her singing as she wanders around the house with her toys.

 

Jessica enjoyed a trip into central London with Mummy and Sophie at the weekend and walked from Leicester Square all the way up Regent Street, around Hamleys and then on to Oxford Street to John Lewis where we had lunch – a walk of more than a mile which was a very long walk for little legs – she was quite insistent though that she wanted to walk rather than go in the buggy (needless to say, she slept very well that night!)  She also enjoyed getting Easter eggs on Sunday (particularly the one that came with a Mr Tumble bowl and cup!) and is gradually working her way through all the chocolate!  

Mummy took Jessica and Sophie to have their first passport photos taken as we are hoping to go on holiday to France in a few weeks’ time.  As we are planning to drive and go by ferry, there should be no problem with this (although haven’t yet embarked on finding suitable travel insurance!) but we have been reminded of the importance of keeping Jessica hydrated.

Whilst we have been celebrating Jessica’s continued good progress, we have been conscious that being able to do so is a precious gift.  Yesterday was a sad day as we attended the funeral of our friend’s little girl and we continue to keep them in our thoughts and prayers.