Tag Archives: holidays

Simple Pleasures

When in the midst of dealing with the complicated life that is M, it’s really easy to get bogged down with the problems and overlook the simple pleasures in life.  As the saying goes, sometimes you need to just stop and smell the roses.  Despite the challenges of the last few months, there have been some wonderfully simple pleasures that are a precious reminder of just how good this summer was between the difficult bits:

  • Standing in the back garden with the children and watching the Red Arrows fly overhead

    Courtesy of en.wikipedia.org

    Courtesy of en.wikipedia.org

  • G & M using walkie-talkies made from nothing more than scrap cardboard and their imaginations
  • Drinking an ice-cold glass of home-made lemonade

    Without the "pink"

    Without the “pink”

  • Taking the train into the city and walking around on a local Art trail whilst investigating the area and sights
  • Watching G and M cheer as Andy Murray won Wimbledon

    Courtesy of capitalfm.com

    Courtesy of capitalfm.com

  • Watching G and M then recreate the Wimbledon moment using our washing line and their beach tennis set
  • Late night cuddles with M and early morning ones with G
  • Enjoying some classic Disney films before bed and finding some new favourites

    Courtesy of hdwpapers.com

    Courtesy of hdwpapers.com

  • Home-made burgers cooked on the BBQ SAM_1215
  • Camping in the garden – well this was one for Mike and the kids, I am definitely never, ever going to consider camping to be a pleasure of any kind
  • G & M spending hours out in the garden:  building dens, climbing trees and bouncing on the trampoline
Courtesy of dartmoor-npa.gov.uk

Courtesy of dartmoor-npa.gov.uk

  • Long lazy summer days spent lying on the beach, building sandcastles and splashing in the sea

SAM_1549

  • Perfecting a myraid of free-from, M-friendly recipes and enjoying tasting each and every one!

    Rainforest flapjacks

    Rainforest flapjacks

Viva Portugal – and our answer on a postcard!

Courtesy of mapsof.net

Courtesy of mapsof.net

Preparing for this summer’s holiday to Portugal went well as we completed the Pellet study with M and I finally answered the question of how to carry all of M’s medicines and foods without paying for an extra bag. So, all I needed to do in the last two days was pick up our holiday money, pack the suitcases and speak to GOSH about the test results from the abdominal x-ray.

Needless to say, the first two list items were quickly ticked off and I even managed to fill the extra suitcase for M without forgetting anything essential.  Tracking GOSH down and speaking to them sensibly took a little longer.  I was anxious to discuss the results of the Pellet Study and what the next step was before we went on holiday, especially given that M’s move up to his new school was imminent soon after our return.  The registrar I finally spoke to on the Friday morning had a real mix of news for me.

The good news was that the x-ray showed that M had passed most of the radiopaque markers – his x-ray was a mix of images 1 and 2 – which suggested that there was no real issue with his gut motility.  The bad news was, that despite 12 days on an increased level of Movicol, M was still heavily impacted. What wasn’t clear was whether we had ever successfully emptied his bowel or if he had become re-constipated during the 5 days he was not taking the Movicol during the study.

The next decision was not an easy one to make, especially with a week abroad on the horizon.  We had to continue with the Movicol, taking 4 sachets daily for the week we were away, which would hopefully keep things moving and empty his bowel out as was so desperately needed.  Both the registrar and I felt it was likely that the 4 sachets would be too much for M’s system, but we really had no other choice and reluctantly I agreed, with a follow up phone-call planned for the first Monday back home. Into the suitcase went the required sachets and extra packs of pull-ups to see us through the week.

Despite the challenges we knew this would bring, we were determined to enjoy the much needed break and the sun.  We set off with plenty of time to spare “just in case”, breezed through check-in and customs, survived the 2 hour wait to our flight and eventually landed safely in Faro.  An hour’s taxi ride to the resort, a quick late night tuna pasta dinner (courtesy of the supply suitcase) and we were into bed for a good night’s sleep before our holiday started properly.

SAM_1590  SAM_1591

The week was amazing.  The kids loved every moment of both the beach and the pool and  we were all amazed at how much their confidence had grown in the last year.  M revelled in splashing about and jumping waves, which was something he wouldn’t do the first time we went just 2 years ago.  He was also brilliant at wearing a pull-up under his swimming trunks to avoid any unwanted problems in the water.  It was far more challenging to change him because of the combination of damp bodies, tight-fitting pull-ups and wet trunks, but we survived it.

He had his moments and we had a couple of major melt-downs as he let out his frustrations about his condition and all that was going on.  Unfortunately, Mike suffered the brunt of this as he’s not usually the one on-hand all day, but he survived it too. The upside is that it gives more ammunition and examples to pass on to the CAMHS team when we see them later this month to argue the case for M needing more support to cope with his emotional and psychological well-being.

M's trusty friend "Cat", came on holiday with us and the maids made M smile by dressing him in M's pjs

M’s trusty friend “Cat”, came on holiday with us and the maids made M smile by dressing him in M’s pjs

We even managed our meals.  This year we chose to eat breakfast and lunch in our apartment every day, rather than venture to the breakfast buffet provided at the hotel.  It was a difficult decision because both children love the opportunity to chose from the vast array of food available, but we knew that it would be a far too limited choice for M.  Instead we ate out every evening at a number of local restaurants along from the hotel.  One of the best things about eating out in Portugal is that it was surprisingly easy to accommodate M’s food restrictions.  His love for most things fish and seafood meant that we were able to order fresh fish that was cooked in olive oil with a side order of chips and he was satisfied.  We found that most of the restaurants were helpful in preparing prawns or fish without any sauces and we skipped dessert as none of us needed it.

As expected, the movicol made the week difficult, but it made a big difference to be dealing with all the stresses and strains in a sunnier climate.  We all needed the break from the daily grind at home and I came back feeling refreshed and ready to tackle the challenges of the new term.

One of the many sandcastle creations M built during the week

One of the many sandcastle creations M built during the week

With a little help from Easyjet

Courtesy of bankingtech.com

Courtesy of bankingtech.com

This summer we travelled once again to Portugal for a week of sun, sand and sangria.  On our 2 previous holidays, Mum and I filled our suitcases, not just with the necessary sun-cream, hats, swimwear and shorts, but also with a supply of M-friendly foods to get us through the week relatively unscathed.  I’ve previously always taken a more relaxed stance to M’s diet whilst away from home as it’s a great deal harder to ensure that his diet is as strictly adhered to as it is at home and we have coped with the resulting consequences, accepting it as our decision.

However, we decided that this year had to be different.  M’s struggles over the last few months with his health have been well-documented on my blog and the accompanying emotional frustrations and challenging behaviour meant that I felt we needed to endeavour to follow his diet as much as we humanly could.  This, of course, meant that we needed to take a lot more M-friendly foods with us – free-from spread, rice milk, cereal, bread, rice cakes and snacks to name but a few.

This increased amount of food, plus all the additional medicines M is now taking – he has increased to 7 medicines daily compared to last year’s 4 and the previous year’s 0 – meant that I needed to find an alternative means of carrying it all as otherwise I’d be leaving some essential clothes behind.

Fortunately, a tip from the “Special Diets” thread on the Dibb website suggested that it might be possible to carry all of M’s medical supplies including the food, as additional hand or hold luggage at no additional cost.  I immediately contacted our airline, Easyjet, to see what advice they could give me.

Frustratingly, it wasn’t as simple as phoning a helpline, but rather I had to go through the rather convoluted route of e-mailing their customer services and waiting for a reply.  However, the small amount of effort required was well worth it as I received the following confirmation from them:

Easyjet would like to advise you that if you need to travel with any kind of medication or medical equipment you can do so, if you provide us with a doctor’s letter at the check-in desk, confirming the name of the passenger who needs them, the amount and names of each medication, doctor’s signature and stamp. You will be allowed to travel with the medication in a separate extra piece of hand or hold luggage without any extra charge. Please remember that in the extra piece of luggage you will be allowed to put only the medical stuff and nothing else.

Please also advise our Special Assistance Department about your need, so they will add this additional information to your booking to make the airport staff aware of your needs.
You can contact them by calling on a free of charge from landline number: 0800 998 1130.

So, I did as I was told and contacted the Special Assistance department.  They put a note onto M’s flight details to advise that we would be travelling with an additional bag free of charge and reiterated that I needed a signed medical note detailing all the medicine and foods we needed to carry with us and how much was needed each day.  I then spoke to our GP, who agreed to list out everything we might possibly need during our holiday.  The letter was duly written, signed and paid for and we were all set for the flight.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

The ease of being able to take a dedicated bag just for M’s medicines and foods was a real godsend and I was impressed at how easy it was to successfully check-in with not a hassle in sight.  There was no question about taking the additional piece of hold luggage through and even the return journey was simple, though I would recommend also having a copy of the actual prescription with you instead of just the medical letter if at all possible.  Travelling with small children is difficult at the best of times and when you add medical needs into the mix, it becomes even more of a challenge, but Easyjet lived up to its name and made our life just that little bit easier.