Tag Archives: health issues

Virgin Fantastic!

The time had finally come and the night before we flew, I sent tweets to both Virgin Holidays and Virgin Atlantic to issue my challenge to meet my holiday expectations and both accepted it immediately.

https://twitter.com/VirginHolidays/status/494057894611267585

First up was Virgin Holidays and their Gatwick V-room.  As I wrote back at the end of July, I had been promised a supply of rice milk for M as well as some suitable options for his breakfast and I was keen to see just what would be waiting when we got there.  Upon arrival, we met the fantastic Dominic, who knew all about M and our request for rice milk.  As soon as we found a table for breakfast, he brought the milk over and then spent some time discussing all of M’s allergies and what food they had on offer that might suit him.  I was impressed to learn that they stock B-free bread and although it contains egg and therefore isn’t suitable for M,  G snapped up the opportunity to have 2 slices of toast as part of her breakfast.  Both children also had some cereal with the rice milk and there was fresh fruit and smoothies available for them too.  I was hugely impressed with Dominic’s attitude throughout our time there and at no point felt that we were an inconvenience to any of the V-room staff.  Even better, we were able to take the remainder of the carton onto our flight with us, which meant we could go on our holiday knowing M had a limited supply of safe milk to hand.

It was then on to our plane and it all started well.  The check-in staff had confirmed that the special request meal had been noted on our booking and the cabin crew provided us with a ready supply of ice to keep the cool-bag of medicines cold for the 9+hours we’d be in the air.  I was equally impressed that they offered to place our ice packs in their on-board freezer to ensure that we could keep everything cool until we reached our final destination in Orlando.  Eventually it was time for the meal and here we hit our first rocky point. oops I had requested a gluten-free meal for G which quickly turned up, but there was no sign of the requested meal for M.  The cabin crew searched high and low for it, but couldn’t find it and we were left with the option of whatever fruit they could get their hands on plus the snacks I had packed to keep M’s appetite filled.  Just as I was mentally drafting a letter of complaint to Virgin Atlantic expressing my disappointment at being let down in such dramatic fashion, our air stewardess hurried up with a tray of food and an apology on her lips.  The confusion had arisen for 2 reasons: 1) the meal had been prepared with G’s name on it rather than M’s and 2) it had been assigned to the seat number of another passenger who had also requested a special meal and the names had not been cross-checked to make sure everything was right.

Disaster was averted, but only just.  The meal prepared was exactly what I had asked for – plain grilled chicken with rice and vegetables and a fantastic fresh fruit salad for dessert – and M tucked in with gusto.  We were lucky that the other passenger had not started eating the meal before the mistake was identified and I’m glad to say that our return flight was not plagued with the same problem, although it still appeared that G had 2 meals (both the gluten-free and special request meals being assigned to her name), whilst M had none!  I hadn’t considered that a smaller snack would also be provided on the flight and was delighted Virgin Atlantic had thought further ahead than I had and provided another delicous fresh fruit platter for M to enjoy safely.

Gold stars all round!

Gold stars all round!

I have been really impressed with how well both branches of the Virgin family accommodated our needs and requests on the flights and wouldn’t hesitate to recommend them to anyone going on holiday with special medical needs.  We didn’t run into any unexpected problems with our travel arrangements and I will definitely consider travelling with them again.

 

 

 

Eating out on holiday

allergymenuOne of my anxieties about travelling abroad with M surrounds the prospect of feeding him safely whilst away from home.  The long list of foods we now need to avoid make it challenging enough to go out for meals when at home and we inevitably have to make a small compromise somewhere along the line, with our fingers tightly crossed that the fall-out isn’t too major.  Whilst we often choose to holiday somewhere where we can either cook or eat out, a holiday spent cooking is not really my idea of a break.  This time around, however, we decided to avoid any form of self-catering and so I gave myself the job of finding safe places for us to eat.

Now, I can’t speak for all the WDW resorts around the world, but I can wax lyrical about the Walt Disney World resort in Florida.  My starting point was at the WDW website, where I discovered that the resort is keen to meet any special dietary needs that its guests might have and encourages visitors to book ahead and let the restaurants know what foods they need to avoid.  I gave them a call and chatted through M’s food requirements and was reassured that, as soon as I knew where we wanted to eat, then they could append a note to our booking to state all of M’s current food allergies.  Mike and I spent hours reading restaurant menus and looking for reviews of the allergy-friendly offerings that are available. I discovered the brilliant blog, Gluten Free & Dairy Free at WDW and soon became very excited about what we might be able to get for M to enjoy.

WDWThe 180-day mark arrived, the point at which we could start to make ADRs (Advance Dinner Reservations for the uninitiated amongst you) and I hopped on-line to make as many of the bookings we had chosen as possible.  The system was delightfully easy to use and I was able to make note of all our dietary needs without hassle.  One of the many experiences we wanted to treat the children to was a dinner show, something we hadn’t enjoyed since our last Disneyland Paris trip, pre-diagnosis and multiple food allergies.  We’d settled on the Hoop-de-doo musical review, but I was anxious to confirm that they could cope with M’s allergies as this is a set menu and there were several things on it that he just can’t eat. Rather than risking confusion through an on-line reservation, I called the WDW call centre and spoke to a lovely lady who was amazingly helpful.  She made a note of the allergies and reassured me that there would be no problem in meeting these needs at the dinner show.

Booking made, she then also checked all of our other reservations to confirm that my notes were clear and talked me through the process of ensuring that M eats safely at any and all of the WDW restaurants.  Upon arrival, we should find that the table will have some kind of allergy marker on it to make it clear to all waiting and serving staff that we have special dietary needs.  The chef will then come out to talk through what is and isn’t safe on the menu, point out any safe foods at the buffet (if relevant) and finally will discuss whether we would prefer them to prepare something fresh and. if necessary, off menu to give us all the most reassurance about what M and G will be eating.

mickeywafflesAt no point did I feel that my questions and requirements were a problem and I felt 100% reassured that WDW would be working hard to make sure that M and G have the best holiday food experience whilst we’re there.  M is looking forward to being able to eat “proper” burgers, something he hasn’t been able to enjoy away from home for an awfully long time, whilst G is just keen to try any gluten- and dairy-free desserts that might be on offer.  Mike and I are most excited about seeing their faces at our first breakfast, when we will be able to order them a plate each of Mickey waffles, something that they both love the idea of, but have never been able to order before.

To ID or not to ID

With our holiday fast approaching, I’ve been considering whether M needs some form of medical ID to carry on him.  The concept isn’t a new one to me as I’ve had a Medic Alert bracelet for years for my T1D and regularly make sure the information held on file for me is up-to-date.  I’ve not previously felt it necessary to have such a band for M, but with his diagnosis of EGID and an increasing number of medicines and allergies to consider, I finally bit the bullet and decided to investigate what was on the market.  Part of the impetus to my search was seeing one of M’s school friends sporting one at our recent local music festival for his T1D and realising that this would be hugely important for those occasions when M is out and about without me or Mike on hand to explain.

medicalert

Whilst my Medic Alert bracelet works well for me, the biggest problem would inevitably be the amount of information needed for M and I felt that it just wouldn’t accommodate it all.  I needed something that would appeal enough to M for him to be willing to wear it all the time as well as having enough room for me to note his name, DOB, emergency contacts, EGID, 12 medicines and 8 food allergies.  No small feat, but – and I doubt this will come as much of a surprise – there is something out there that does all this with ease.

20140803_200524The wonderful ID Band company has a range I couldn’t fail to be impressed by.  From bracelets to necklaces, sports bands to medical bags and the all important kids range, plus a whole host of “spares”, some of which you wouldn’t have even thought of until the moment you need them, there is pretty much everything you could conceivably want.  As well as the more traditional metal panels that you can get engraved with the exact wording you want, they also offer the product I was looking for – a wristband containing a card ID that you can personalise as necessary and the whole band is completely waterproof.  Cautious as ever, I browsed the site to check there was nothing better available, but kept coming back to this one band in particular.  The card ID was big enough to take all of M’s details, I could buy extra cards for when things change and the sizing was ideal for M’s small wrists.  Even better I could get it in green camo, just the thing to appeal to my small boy.

20140803_200443I placed the order on a Thursday afternoon, with my fingers crossed that it would arrive in time for our holiday and to my astonishment, the parcel dropped through our door the very next day.  I filled the information out and presented it to M, hoping that he would be keen to give it a whirl and not reject it out of sight.  I needn’t have worried – M was desperate to try it on straight away and has been more than happy to wear to his holiday club this week.  Once again, a massive double thumbs up from both children (well G wanted one too to state her allergies) and a hearty recommendation from this very satisfied Mum.

Hay fever

dandelionEvery year I’ve had to cope with Mike’s relentless sneezing and G’s sniffles that signal the start of summer in our household.  I’ve never experienced hay fever (also known as allergic rhinitis) and have to confess to being more than a little fed up with the constant coughing, endless nose-blowing and general spluttering that would accompany every summer day spent outside with my family.  Given the rest of M’s allergies, it was something of a surprise that he’d never suffered with hay fever, but definitely a good one.  Naturally, that equilibrium couldn’t carry on and this year he crashed into the world of hay fever with style.

It all started with yet another bout of croup.  M struggles with croup 2 or 3 times each winter and has done since he was tiny.  We were always told he would “grow out of it” in time, but by the time he’d hit 5 and was still suffering, I began to doubt that it would be something we’d be saying goodbye to any time soon.  Last year I read an interesting medical article about “allergic or spasmodic croup“, which is caused by an allergic reaction to substances such as pollen as well as by acid reflux.  It wasn’t relevant to us at the time of reading, but I filed it away in the back of my mind to be mused on at a future point.  This point came after Mike and the children had been away for the annual Dads and Kids camping weekend and M was coughing that oh-so-distinct seal-like bark, which I remembered had developed at the exact same time last year.  I wasn’t sure what had caused the croup to develop, but the coincidence of timing and the memory of that article made me wonder if we were seeing some sort of allergic reaction manifesting itself in M.

stethoscopeWe popped along to see one of our lovely local GPs and put the question of M’s croup to her.  I wanted to be certain there was no underlying infection that needed to be dealt with and was keen to see what she thought it was.  She listened to M’s chest, heard his cough, took his temperature and reassured me that there was nothing untoward going on. Her opinion was that he was suffering from hay fever (tick to the allergic reaction to pollen) and the croup was being caused by post-nasal drip.  She suggested that we’d not seen many signs of hay fever in M before because he regularly takes antihistamines to help manage his EGID, but this year’s particularly high pollen count was too much for those medicines to manage.

M received yet another prescription, this time for a nasal spray to help with the hay fever and I have to say that within days of taking it, his croup cleared up and has yet to return.  So, M appears to have joined the ranks of hay fever sufferers in the family and I’m happy remaining the odd one out on this occasion!

Holiday planning

countdownIt’s that time of year when months, weeks or maybe just days of frantic planning come to fruition and families across the UK enjoy a week or two away from it all.  Whether it’s time in the sun, travels to far-flung shores or even just a few days experiencing something new in the UK, most of us wouldn’t think much beyond making travel arrangements, booking somewhere to lay our heads and throwing the essentials into a bag.  For years my saving grace was the thought that, insulin aside, if I had forgotten anything else even vaguely important, as long as we had money, we could pop to the shops to find a replacement.

Once you have children with chronic illnesses or food allergies, everything suddenly becomes that tiny bit more difficult.  No longer can you risk forgetting any part of the equipment or medicines you need to get your child through each day.  No longer can you assume that you will be able to get hold of the gluten-, dairy- or any other allergen-free food that your child needs to remain healthy.  And you have to consider what you would do if any one of your “what if” worst case scenarios was to actually happen.  With all of these things to complicate what should be a fun and relaxing time away from home, it’s no wonder that many families living with chronic illness choose to holiday at home, or within reasonable spitting distance, so that many of those concerns are alleviated.

Whether you consider it courageous or complete and utter madness, we’ve never been a family to stay close to home.  Mike and I both love travelling and have chosen to nuture a similar passion and willingness to explore the unknown in our children.  Part of that has no doubt been fuelled by our want to go back to Canada regularly to visit family and friends and over the last couple of years we’ve developed strategies to help us cope with travelling with M.  I carry doctors letters and copy prescriptions for both M and me in with our passports and last year discovered that we’re entitled to ask for additional luggage allowance to carry all of M’s medicines and foods with us free of charge.

walt-disney-mickey-mouseWith all this in mind, and our plans for this year’s holiday well under way, I contacted our travel company and airline to discuss our needs.  This year is our “holiday of a lifetime” as we are going to Florida to enjoy all things Disney and Universal before spending a relaxing week on the beach in St Petersburg and I want it to be as straightforward as it possibly can be given the challenges of EGID and multiple food allergies.  Planning for this trip started months ago and I had drawn up a list of things I wanted to find out to make our holiday as stress-free as possible.  My first set of questions was all to do with our flight out and I contacted the Virgin Atlantic Special Assistance team to talk over our needs.  I was quickly reassured that, as before, we could carry all of M’s medicines and foods in an extra suitcase and was advised to make sure I had copy prescriptions and doctors letters with me to make our security experience as smooth as possible.  They’ve also added a note to M’s booking to make it clear to all staff that we are entitled to carry extra luggage free of charge for medical reasons.  A big tick there that there will be no problems carrying M’s medical supplies.

Next the small matter of M’s in-flight meal.  I couldn’t imagine that any of the special meals on offer were going to avoid the wide range of allergens we needed them to, but again the Special Assistance team were able to help.  I sent an email with a full list of the foods M can’t eat and then followed it up with a phone-call.  The lady I spoke to agreed that it would be difficult to accommodate him with their standard meals, but asked what, if anything, would suit him.

Plain chicken and rice,” said I, “with no butter or sauces added and a few vegetables on the side.”

Leave it with me,” she said.

A couple of hours later an email popped into my inbox.  “I’ve spoken to the catering staff and they will make plain chicken and rice as requested for M for the flight.  I’ve passed on a complete list of his allergies for their reference, so please let us know if anything changes between now and your flight.  I’ve added all this information to your booking.”  I was amazed at just how easy adapting a meal to suit M was, but because I’m something of a worrier, I gave VA a quick call last week to confirm everything was okay for the meals.  “Yes absolutely.” said the man I spoke to this time round.  “I can see this meal marked on M’s booking and this list of foods to avoid.  Is that all correct?”  They’d even had the sense to annotate the return flight too, so I can be confident that M will be eating something safe in both directions.  They also suggested we carry a supply of safe snacks in our hand luggage (another extra bag could be carried free of charge if it was necessary), so that M won’t go hungry during the flights.

vroom_header_tcm4-588081The final element was our booking in the V-room airport lounge before we make our flight.  A complete breakfast menu is available to us, but scanning my eyes down the list of food, I could see that there was little on there that would be safe for either child, though G had a few more options than M.  This time I contacted Virgin Holidays as they run the airport lounges and asked what our options were.  I was given a list of foods that are M-friendly and advised to ask to speak to the chef when we arrive at the lounge to discuss what M would like for his breakfast.  They stock gluten-free foods as a matter of course and whilst they had soya milk as an alternative for dairy, this wouldn’t suit M.  Once again I was told that this wasn’t a problem and was hugely impressed to receive a follow-up email telling me that the chef of the V-room had contacted their suppliers and would get in some rice milk just for M on the day of our flight.  What more could an allergy-Mummy ask for?

fingerscrossed

Of course, there are no guarantees that any of this will work out as planned and I am cautious enough to be taking supplies sufficient to meet our needs as we make the trip to the US.  I will, naturally, let you all know how it goes once we’ve made our flight!

Eye adventures

Have you ever even heard of a chalazion?  No?  Me neither, but after last weekend’s events, I now consider myself to be an expert.  It all started with what I thought was an innocent stye in G’s right eye a week ago.  Her eye was a little swollen, but I’ve suffered with styes myself over the years and simply set to bathing it regularly with cooled down boiled water and bicarbonate of soda.  I had my fingers crossed that this treatment plus a trip to our GP on Monday would do the trick – why do children always get ill on the weekend? – but luck wasn’t with any of us last weekend.

Courtesy of medypal.com

Courtesy of medypal.com

Whilst Mike and M enjoyed a fast-paced weekend of adrenalin-filled 8th birthday parties, G and I were subjected to 7 hours visiting 3 of our local hospitals.  By the time G woke up on Sunday morning, it became abundantly clear that a trip to A&E was going to be necessary.  Poor G looked like someone had whacked her in both eyes, which were heavily swollen, red, weeping and extremely tender to the touch.  The single stye appeared to have multiplied and she now had a row of them across the bottom of both eyes.  We started at our local children’s hospital, a place I’ve visited more in the last 3 months than in the past 3 years due to our bad experience with their previous care of M.  The doctor there identified that G had had an allergic reaction to something unknown and gave her an anti-histamine to start to reduce the swelling around her eyes.  However, she was concerned about the number of small lumps along G’s lower lid and referred us on to the local eye hospital, who could see G just after lunch.

Fortunately, the hospitals are within walking distance of each other and we were able to pick up the prescribed anti-histamine from the main hospital (the only hospital pharmacy open on a Sunday), grab some lunch from a coffee shop and make our way in plenty of time for G’s appointment.  Once at the eye hospital, G was diagnosed as having a series of styes as well as a chalazion, which has resulted in preseptal cellulitis, a severe inflammation and infection in her lower eyelids.  Another prescription written, this time for antibiotics, eye drops and eye ointment and a mad dash back to the hospital pharmacy to get the medicines before it closed at 3pm ended our day and G and I were finally back home by 4pm, a full 7 hours after we left it that morning.

10359040_265190260333785_8817047899935492808_oThe great news is that a few days on, the medicines and continued regular bathing and massaging of her eyes has started to work and the swelling and redness is starting to subside.  This morning her left eye looked almost back to normal and her right eye has improved hugely, though the chalazion will take a little longer to disappear and return my girl to her full beauty.  G sadly missed her last days of Year 5 due to the infection, but I’m hoping for a great summer holiday now she’s well on the road to recovery.

Allergy Adventures

adventureIn my recent blog about the Allergy and Freefrom show in London, I mentioned in passing the wonderful Allergy Adventures, who M was keen to visit during our day at the show.  We first discovered Allergy Adventures at last year’s show and were so impressed with their products that we’ve kept going back for more.

Allergy Adventures was set up by the lovely Hailey, who explains her reasons for starting the company on her website.  She produces beautifully illustrated children’s books that take the reader on a magical journey inside their lunchbox, accompanied by a character with the same food allergy as them as they look for safe foods to enjoy.  Each book focuses on one main allergen and teaches the child “how to tell others about their allergy and stay safe around food.” These books are bright and colourful and drew M’s attention last year as we wandered the stalls of the Allergy show.  Whilst he and G joined in with some paper-plate crafts – an absolute godsend to any parent who wanted a break from complaints of aching legs due to the amount of walking needed – Mike and I flicked through the books.

Stickers_5_largeUnfortunately, due to the extent of M’s allergies, there isn’t one particular book that we could buy for him to enjoy and to share with his friends, but there was another product that caught my eye and which I snapped up in an instant.  These fantastic “stickers” have proved invaluable in labelling any pots, products or boxes that go into school for M’s use.  His lunchbox, water bottle, medicine pots and individual tupperware containers all have a sticker, indicating that the contents are M-friendly and for his use only.  Even the children’s swap-boxes have a couple of “Hands off” stickers, so that everyone knows that they are specifically for G and M.  What I particularly love about these stickers is that they create a positive association with his food for M.  Rather than focusing on the “free-from” label and listing what he can’t eat, they instead stress that the food is special because it belongs to M or G and not to anyone else – a great message for my allergy-challenged boy.

Earlier this year, Allergy Adventures also produced an amazing allergy-friendly cooking guide, which lists out easy substitutions that can be made when baking or cooking for someone with food allergies.  Not only does it make sensible suggestions about replacement products to use, but the notes highlight key areas to consider when using alternatives.  Best of all, this has been produced as a free resource and can be found by following this link. With plans afoot for creating more resources to support children with allergies both in hospital and in schools, this is definitely one to watch.

After our first hour or so at the show, we finally listened to M’s request and headed for the Allergy Adventures area.  Once again both G and M created paper-plate masterpieces, whilst resting their aching feet and Mike and I had a break from their moans, for a few minutes anyway.  I grabbed the opportunity to catch up with Hailey, who I chatter with on Twitter and 10outot10also the fabulous Vicki, the FreeFrom Fairy, another Twittersphere friend.  Once G and M had finished their creations, they were captured on film for the Allergy Adventures video all about the 2014 Allergy show.  There’s really nothing more to add.  This is a great set of resources for anyone with a child with food allergies and I would really recommend you spend some time exploring everything Allergy Adventures has to offer, it definitely won’t be time wasted.

 

A Grand Day Out

granddayoutIf you’re a sports fan, then last weekend was the weekend for you:  Wimbledon finals, the Tour de France in Yorkshire, World Cup quarter-finals and the Formula 1 British Grand Prix.  Under normal circumstances, I’d be trying to grab glimpses of the tennis whilst dealing with the never-ending demands of homework and food, admist the cries of “Do we have to watch the tennis?” from G and M.  This year however, saw a break from the norm and instead Saturday found me browsing the shelves of Milton Keynes’ library on my own as Mike and the children spent the day at Silverstone.

20140705_164656This amazing opportunity to watch the qualifying races for the British Grand Prix was thanks to the GOSH events and charity team, who work with Bernie Ecclestone and his team at Silverstone to fundraise for the hospital.  They have been working together to raise much needed money for 10 years, raising a whopping £4million for the hospital.  Each year they offer 30 GOSH patients and their families the chance to visit the race track over the 3 days of the Grand Prix event.

I first heard about the event on Twitter, where 140 characters offered parents and family of GOSH patients the opportunity to contact the charity’s office and apply for tickets for the event.  I wasn’t convinced we’d get the tickets given there must be hundreds of children who’d love to attend, but I came to the conclusion that there was nothing to be lost in making the application.  I filled the form in, contacted M’s gastro team to ask for an email supporting our request and confirming that he was fit and well enough to attend the day and emailed the completed form back in with my fingers tightly crossed.  I hoped we might have a good chance as M said he wanted to go on the Saturday as 1) he wouldn’t miss school on the Friday and 2) he didn’t want to go on race day itself as we weren’t sure whether there’d be as much to do during the day.

20140705_161022

20140705_105949We didn’t have long to wait and were delighted when Mike got the phone-call to say the application had been successful and 3 tickets for the Saturday were ours.  M was very excited to be going and the opportunity couldn’t have come at a better time for him as he’s been struggling with some big flare-ups from the EGID recently as well as the introduction of 3 new medicines to his daily regime, which has been challenging for us all.  The day had become a real focus for him and he was determined to have a great time there.  It was also fantastic to be able to include G in the day out as she rarely benefits from M’s illness and is frequently relegated to second place as we try to deal with him.  She was as excited as the boys and I hoped she would enjoy herself as much as I knew Mike would!

20140705_112530So, whilst my lucky trio spent their day meeting the likes of Eddie Jordan, exploring the Paddocks and the garages, polishing a F1 car and experiencing everything that Silverstone had to offer, I spent a quiet day on my own in Milton Keynes.  I explored the shops, enjoyed lunch at John Lewis and spent a few idyllic hours peacefully writing my blog and reading in the library.  The children have hardly stopped for breath since Saturday, telling me tale after tale about their grand day out and it’s all thanks to the hard work and generosity of those at both Silverstone and GOSH.

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Musical interlude

Music expresses that which cannot be put into words and that which cannot remain silent

                                                                                                                             – Victor Hugo   

Everybody needs a release for the stresses and strains of day-to-day living.  For some it may be sitting down in front of the television with a large glass of something cold, for others it could be something more active to challenge the body to see just what they can achieve.  For me, there are three things guaranteed to lighten my load:  a good book; a successful bake; and music.

piano

For as long as I can remember, music has been a huge part of my life.  When I was growing up, my parents always said they knew when I was finding life tough because the music would slowly disappear from my daily routine.  I would no longer sit at the piano and sing, until eventually that dark cloud would pass and I could let the music back in.  It is amazing to me how certain songs or tunes can evoke powerful memories and the emotions come rushing back.

clarient These days, whilst the piano sits proudly in our sitting room as an important member of our family that I cannot imagine being without, I rarely find the time to bash out a tune or two.  All too often, I find myself surrounded by small children who want to play alongside me, but who don’t have the patience to allow Mummy to teach them the basics.  However, despite a certain reluctance to put in much practice at home, both G and M have chosen celloto learn instruments to play.  We were recently treated to the school summer music concert, which saw both children playing solo pieces, though I’d be hard-pressed to say who had the greater look of concentration on their face – G with her clarinet or M with his cello.

I am delighted that both G and M love to have music in their lives, a fact that I like to attribute to my incessant playing of specially selected compilation albums during both of my pregnancies.  They both listen to CDs at night to help them settle to sleep and we almost always have a CD playing in the car, even for the shortest of journeys.  I maintain that there is a song for every occasion and have been known to coax M out of the darkest of moods by my rendition of any song that springs to mind, often with a slight change to the lyrics to suit the situation.

My biggest musical passion is, and always has been, singing.  Over the years I have had the opportunity and privilege to sing with some wonderfully talented musicians, from my competition-winning school choir to the history-making Cathedral choir and many more along the way.  I have sung with women-only choirs as well as mixed voices and have had the heady experience of performing on my own in addition to singing with groups that have varied in size from less than 10 to over 200.

choir

My current choir is a wonderful group of anywhere between 10 and 20 ladies, who meet weekly to share our love of music.  Each Tuesday I abandon Mike and the children for an hour’s worth of music, laughter and the most amazing friendships I could imagine.  This group of ladies bring a smile to my face without fail and this week’s rehearsal found me giggling so hard that I couldn’t get any semblance of a note out of my mouth.  I was transported away from the week’s dramas with M and instead could just enjoy some time without that pressure overwhelming me.  No matter what the song, we have a great time and it’s been a pleasure to see the choir grow over the last couple of years.  Sometimes the lyrics of the songs really strike a chord and help me express something I had no idea how else to explain.  At our recent concert, one of the other choirs performing sang the song “There’s a hero” by Billy Gilman which really spoke to me of our journey with M and how I feel about our family.  If you don’t know this song, you can listen to it here.

 

 

The Battle is won

battleThis has been a surprisingly difficult post to write.  I’ve found it challenging to give the details of our progress over the last 4 months following my formal complaint to our local hospital about the poor treatment we received when we were there earlier in the year, without it sounding either overly clinical or emotional beyond belief.  I’ve finally resorted to bullet-point format as the steps we’ve taken have been an important part of our journey with M that I want to share, but they don’t need any unnecessary waffle in the re-telling.

  • 24-Feb-2014: Write a formal letter of complaint to the Patient Advice and Liaison Service (PALS) based at our local hospital, giving details of our appointment, what happened whilst we were there and our areas of concern regarding the care they’re refusing to offer to M.
  • Mar-2014: I also write to our local MP asking for his help in getting local hospital support for M and giving brief details of our poor experiences to date, including a copy of our formal complaint and my blog-posts, so that he has all the relevant facts to hand.
  • Mar-2014: Receive an acknowledgement of my complaint from the hospital, who advise they are looking into the matter and will send a formal response by the end of April 2014.
  • Mar-2014: Our MP’s secretary calls from Westminster to express their dismay at learning about our experience and to offer an appointment at his next local surgery to discuss the matter further and to see how he can usefully support us in our quest to get local input for M.
  • Mar-2014: Receive a copy letter from the General Paediatrician we saw in February giving details of the appointment and what next steps they suggest are followed to help M.  Given the date of the letter and the way it is written, it is blatantly obvious that it has been written with my complaint in mind and does little to reassure me that this medic will be fighting M’s corner going forward.  The letter stresses that they are concerned about our request for shared care, but that they will refer M to one of the gastro consultants based at our local hospital to see if he will help.
  • Mar-2014: Same day that we receive the letter from the last doctor, I meet with our MP to seek his advice.  He listens with a sympathetic ear and immediately offers to do whatever necessary to ensure M is given the chance to receive local support as well as the care from GOSH.  In the light of the letter received, he proposes that we wait to see what the formal response from the local hospital is and whether the referral is successful or not. He also asks that I keep in touch with his secretary and let her know how things progress.
  • April-2014: A month passes without much movement on either the complaint or the referral front.  I contact our GP to ask him to also refer M to the gastro consultant as I am still lacking confidence that the hospital doctor will do a favourable referral given the nature of my complaint.  During this wait, we have a planned appointment at GOSH and I am able to discuss with them whether they would support our request for shared care. The gastro team is very supportive of our request and advises that they usually recommend that a general paediatrician is the point of contact locally to avoid any unnecessary conflicts concerning M’s treatment.  However, given our local’s apparent reluctance, GOSH agree they will discuss M’s care with anyone in the local hospital.
  • April-2014: We finally receive a reply from the Chief Exec, offering his apologies for our poor experience as well as giving me their findings about the complaint.  He also offers a meeting with both the gastro consultant and a member of the Senior management team at the hospital to see how we can take M’s care forward.  There is some confusion as to who will schedule this appointment, but a series of phone-calls on my part and a very helpful admin assistant at their end means that the appointment is finally organised for June.
  • May-2014: I receive a follow-up email from our MP asking how things are going and reminding me to keep him informed of any changes in our situation.  I’m delighted to be able to inform him that we’ll be meeting our local hospital at the beginning of June and agree to let him know how that meeting goes.
  • June-2014: The day finally arrives and Mike and I head off to our local hospital to meet with members of staff to discuss M’s needs, having left a poorly M with Mum for the duration.  Our aim is to get our local to agree to having “shared care” with GOSH, so that we don’t have a repeat episode of our Christmas hell with a M who desperately needed admitting for treatment and nowhere that would take him.  The consultant we meet is delightful and we’re thrilled to learn he worked at GOSH for a number of years and, even better, has worked alongside M’s consultant there.  He instantly agrees to look after M on a secondary care basis, dealing with our existing issues with recurring constipation/impaction and any emergency situations which may arise.  The management team has no choice but to go along with his suggestions and we agree on a system that should work well for us all and will ensure that M gets the very best care at all times.  The meeting ends with a follow-up appointment with the consultant 5 days later to deal with the current bout of impaction that M is suffering.

champagneIt has not been an easy road to follow and the number of letters, emails, phone-calls and late night discussions that have been flying around is huge – BUT we did it.  We’ve got secondary care for M at a local level and a positive way forward for the next few years, which is everything we wanted and which I hadn’t dared to believe was possible.  Of course, we still need to see how it all works outs in practice, but the first signs seem positive and we know we’ve got at least one consultant on our, and M’s side.