Category Archives: Parenting

Reflections of an appointment

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I started writing this blog post 12 months ago and had put it to one side then because I wasn’t sure that the time was right to share all that was going on with M’s care at that point, particularly when it came to expressing my hesitation about whether the decisions being made were the right ones or not. Today we find ourselves in an even more emotionally charged situation and are becoming increasingly vexed with the marked lack of progress made over the last year. I revisited this original blog post tonight and decided that it now feels right to express that turmoil and the frustration in dealing with a medical team that appear to have lost their impetus to engage with us and with M. Those words written in italics are about our current experience.

There’s been lots going on over the last 6 months as many of my blog posts about our mini adventures have shown, but the one area I haven’t yet shared is the journey we’ve been exploring with our local consultant as I briefly mentioned last November. The decision to move almost all of M’s care from GOSH to our local hospital has not been an easy one to make, but for many reasons we have concluded that it is possibly the best one for now. Having a complete MDT (Multi-Disciplinary Team) close at hand to discuss all the challenges of M’s health has been invaluable and experiencing first-hand their willingness to see him at the drop of a hat over a 6-week period, where we’ve had 2 “emergency” appointments and 1 planned one, has been a relief, especially when you consider the problems we’ve had with them in the past.

It sounds fantastic doesn’t it? An almost perfect solution to meeting the complex and on-going medical needs of M; and yet, I would be lying if I didn’t admit that we’ve had our ups and downs with some of their suggestions and have not yet found ourselves moving on and making progress from the starting point we had 12 months ago. The overall opinion held is that M’s ongoing problems are not really related to his EGID diagnosis or the numerous foods we have previously identified as being unsafe, but rather a physical problem that is massively affected by psychological influences that are still to be fully explored and identified. We don’t disagree that there absolutely has to be a psychological element to M’s health: how can any child live through the experiences of his first 12 years and not be impacted in that way? But it also feels as if they’re throwing the proverbial baby out with the bath water and ignoring all of M’s physical symptoms from birth to 5, a time when it was impossible for him to have developed any fears of new foods or associations that certain foods would cause certain health problems.

It’s been challenging for us to adjust our thinking and look to embrace their suggestions of how to move things forward for M. Experience is constantly nagging at the back of my consciousness, gently reminding me that so many times I have been proved to know my son far better than the doctors treating him; but Mike and I have both worked hard to be positive about their new ideas because ultimately we want what is best for M and what will improve his quality of life beyond his, and our, wildest expectations.

In August 2017, my thoughts stopped there. I wanted so desperately to believe that things were going to change, to improve for M and it was, I think, a conscious decision to not air my hesitations and doubts because I was afraid to unwittingly jinx the improvements we were hoping would come about. However, nearly a year on and things have not changed at all. I now have a child who has struggled his way through the first year of secondary school and has lost the spark that makes him him. M no longer sees a positive in being treated at our local hospital and just wants to return to the care of GOSH, which is the last place he can actively relate to seeing any major changes to his day-to-day living. He has gained a couple of extra foods, but we are only at 9 (chicken, rice, cucumber, apple, pear, parsnips, bacon, onion and banana) and not the 20 that his consultant expected when we met him at the start of June.

At that appointment, the entire MDT acknowledged that M is not the child they knew 12 months ago and commented on his lost enthusiasm for choosing new foods to trial. I have tried so hard to explain to them that I am certain that M is not thinking his body into failing those challenges, but none of us really knows that for sure. The truth is that there are some foods that cause an unquestionable reaction and with others it’s difficult to judge if they’re causing an issue, or if it’s simply a case that we’re not really giving his body time to rest and recover between each trial. I’ll be honest, we’ve decided to relax the rules a lot at key times because it’s becoming increasingly evident that M needs the emotional boost that occasionally being able to eat more “normally” gives him. However, every decision to eat something we wouldn’t usually allow brings with it a set of consequences that are difficult for us all and not just for M to process.

I don’t know where we’re heading or what the next few months hold for M. The one thing we’re all agreed on is that we can’t keep living the current status quo because every day like this destroys another small part of the confidence we have in his medical team and buries his spark even deeper.

Homeward bound

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With our whistle-stop tour of Scotland almost over, there were just a couple of places left on our hit list before we finally got back home. Mike was keen to detour via the Angel of the North, whilst G was desperate to make Scarborough our destination for the last night of our holiday. The last 2 days we were spending away from home were very much going to be all about the travelling, so it was good to have a couple of pit stops already planned for the necessary toilet breaks, stretches of our legs and escape from the relatively small confines of the car.

We crossed the Scottish border around lunch-time and I just about managed to snap a quick photo of the 3 Scottish flags that were flying to mark our departure. It then took us another 2 hours to travel down to Gateshead, home to the impressive Angel of the North. For those of you who don’t know, this is another Antony Gormley sculpture and one that dominates the landscape albeit in a surprisingly unintrusive way. As always there was a small competition in the car to see which family member could spot the Angel first and as it so often is, M managed to beat G and spotted it first. We parked easily and wandered across the grass to stand beneath its incredible wingspan and just stare up at the clouds. There was a somewhat heated debate between M and Mike as to whether the wings were moving in the wind, whilst G and I left the boys to it and simply stretched our legs out before climbing back in the car for the next part of the journey.

It would be fair to say that most of us slept – except Mike as designated driver thank goodness – over the next few hours, until we finally arrived in Scarborough far too late to do much more than drive rather aimlessly through the town and look at what we could have explored if only we’d arrived a little earlier. It’s still something of a mystery as to why exactly G was so determined to visit Scarborough, but I rather suspect that it has a lot to do with the infamous song, “Scarborough Fair” and not really anything else. She didn’t have a plan for anything she wanted to visit whilst there and M’s rather fed-up quizzing of her motives resulted in nothing more than a cursory shoulder shrug and typical teenage smile.

We were all a little tired, a lot travel-weary and in desperate need of food. Thanks to a speedy bit of googling on my trusty i-phone, I managed to find a well-recommended fish and chips shop that specialised in gluten-free batter and we decided to push the boat out for one last time on our holiday and spoil us all with that little treat. The gluten-free menu at Fish and Chips at 149 in Bridlington was incredible and I would highly recommend to anyone looking for a great allergy-friendly meal. We each chose our fish and accompaniment of choice and then headed to the seafront to sit and enjoy our meal. The portions were huge, but much enjoyed and we finished the evening off with a much-needed and refreshing walk along the seafront. It was a wonderful end to a fantastic holiday, though we were all looking forward to being homeward-bound once again.

The Hunt for Nessie…and other adventures

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Inverness was the location for yet another flying visit on our whistle-stop tour of Scotland, but was one we all enjoyed hugely and it even saw both children expressing a surprising yearning to move North as they gazed at properties in the estate agents’ windows. Inverness itself was not the primary focus of our visit, but rather nearby Loch Ness, which M insisted was a place we absolutely couldn’t even consider missing out when we were practically passing right by the proverbial doorstep. Our time spent there was tight, but we managed to squeeze in everything we wanted to do and even found an unexpected bonus before we left again to travel on to our next destination.

It was whilst we were in Inverness that the snow that had been dogging our every step finally caught up with us, but it didn’t spoil our morning’s trip to Culloden, the site of the final battle of the Jacobite rising in 1745. Despite M’s reluctant traipse around the visitor centre itself, the rest of us enjoyed the interactive displays which carefully talked the visitor through both sides of the story and depicted the events that led to the final battle. It is not a part of British history that either Mike or the children really knew at all and I enjoyed brushing up on my rather scant knowledge too. Mike and G took their time reading the displays, whilst M and I moved at his usual faster pace as I desperately tried to cut through all the facts to capture his interest in the story itself.

Being the Easter holidays, there were some great children-friendly activities available for younger visitors and they appealed to both M and G, who were fascinated to learn more about the weapons used during the battle as well as glimpsing a small insight into the household essentials of the time. We even participated in the family orientated quiz that was held in the last exhibition space and M proved once again that although he moves fast, he’s able to pick up a surprising amount of information in a short space of time and was able to answer with ease questions that left the rest of our side scratching our heads. Once we had finished exploring all that the museum had to offer on the inside, it was time to wrap up warm and venture out onto the snowy battlefield itself. Despite the grey skies and intermittent snowfall, we managed to make our way all around the site, although the return journey back to the warmth was at speed. Neither child had been particularly interested in visiting Culloden in the first place, so to make a full morning of it counted as a real success in our book!

We enjoyed a picnic lunch in the car as we travelled from Culloden to Loch Ness itself and stopped en route to take a few snaps of the beautiful scenery we were passing. Our destination for the afternoon was the Loch Ness Centre and Exhibition, which talked us through the history of Nessie and all of the scientific (and otherwise) investigations into whether she really exists. The children had the chance to investigate the photographs and evidence themselves and drew their own conclusions about whether the Loch Ness monster really exists. It was a fun and interesting exhibition and I particularly enjoyed the last room, which talked about other incidents and discoveries in the Loch Ness area, rather than focus on Nessie herself. A quick jaunt through the gift shop heralded the end of our day out and we headed back to the hotel for some much-needed sleep before moving on once again for the final destination on our tour of Scotland.

Scottish Engineering

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Looking back now, 2 months on since our Scottish adventures, I can’t believe just how much we did in what really was so short a time. Having “done” Glasgow, our next major destination was through the beautiful, snow-tipped Cairngorms to Inverness, but not before we had stopped off to experience 2 unmissable sights – the Falkirk Wheel and the Kelpies. When we first started planning our trip to Scotland, so many family members and friends told us that we absolutely had to visit the Falkirk Wheel and warned us to pre-book our tickets to make sure that we didn’t miss out that we both took heed and booked our Easter Sunday day out.

The engineering wizardry of the wheel, which was the world’s first rotating boat lift when it was opened in 2002 to link the Forth & Clyde and Union canals, had M absolutely hooked from the moment we showed him the website and he couldn’t wait to actually experience it in person. The transition from the lower canal to the higher one (and back again) is unbelievably smooth and you hardly realise you are moving 35 metres into the air on a remarkable man-made structure, planned in Lego and powered by the energy required to boil just 8 kettles for tea. Without a doubt, it is an impressive sight to observe and having done our “turn” on it, we settled in at the cafe for a light allergy-friendly lunch accompanied by a side order of a great view of the wheel doing its thing as we ate. 

The tour guide on our boat gave us so many facts and figures about the Wheel that it seemed almost impossible for the children to absorb many of them and yet, even now, they still remember the ones that particularly fascinated them whilst we were there. As we looked out from the top canal towards the Firth of Forth, we heard about the Kelpies just a short drive away and knew without a shadow of a doubt that we absolutely couldn’t head further north until we had taken our horse-mad girlie to see these amazing structures.

Built in a phenomenally short space of time in 2013 to form a gateway to the eastern entrance to the Forth & Clyde canal, this monument encapsulates the mythical beauty of the water spirits of Scottish folklore whilst forming a fitting tribute to the horse-powered heritage of Scottish industry. These 30-metres high horse heads are simply breathtaking to see and although we didn’t have time to enjoy the Easter sunshine with a walk through the Helix parkland project, we all relished the opportunity to stretch our legs and even perfect some dance steps on the way to the structures. All in all, it was a perfect way to spend a peaceful Easter Sunday with family and one that perfectly combined so many varied aspects of the Scotland we were slowly discovering each day.

And I’m back!

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You might have noticed that my blog has been quiet for a few weeks and, in time, I will explain a little more about the need…my need… for an extended silence as life has happened around us. However, we’re home after some family time away from home over the Easter holidays and I’m back with a vengeance with just so many reviews, recipes and photos to share from the last month or so.

But, before I get to the fun bits, I thought there was a much-needed health update, which is desperately long overdue. On the medical front, things are still ticking along without much intervention from anyone other than us. We haven’t been seen at GOSH for over a year and I have no idea when or if an appointment will come through the door. The gastro department there are very much working on moving patients back into local care and whilst I have steadfastly refused to let them discharge M from their care fully, they have definitely taken a step back and are in the background in an advisory capacity only should we want or need to call on them.

It also feels a little as if our local hospital has shrugged their shoulders with something of a “…we don’t really know or understand what’s going on with him…” attitude and are touching base with us on a fairly infrequent basis. I don’t really blame them as, for the most part, M is just going along as always and frankly I’m certain that I know far more about managing the ups and downs of his EGID on a day-to-day basis than anyone else. The one biggest change that has hit us has been the confirmation that there is almost definitely a mast cell problem lying alongside the EGID, but as the treatment is more or less the same for both, that diagnosis hasn’t made a difference to him or us in any way.

Food-wise, we’re now tentatively up to around the 9 or 10 food mark, having introduced onion, bacon and bananas on a regular basis and allowing the occasional other food creep in when circumstances call for it and we can be reasonably confident we can manage the outcome. These 3 foods have really added to my repertoire of recipes and make cooking so much more interesting and flavourful for M. Holidays continue to be the time when we really stretch our boundaries and whilst there are always consequences to live with – some of which are easier than others – our approach has led to a much happier M.

Both children are doing well at school with glowing “short” reports and parents’ evenings for them. G has selected her GCSE options with relatively little fuss or argument or discussion and we’re heading with a little trepidation into the wonderful world of humanities combined with dance. She recently took and passed her Grade 3 clarinet exam, a day I wasn’t sure we’d ever see and is also teaching herself to play the keyboard, guitar and ukulele in any spare moments she finds at home. G and M also recently took part in a regional Stagecoach performance celebrating 30 years of Stagecoach and loved every moment of it. It was great to watch them from the wings (I was back in chaperone role once more) as they danced and sang with enthusiasm on stage. As you can see, it’s been a busy few weeks and there’s just so much to share that I’m not entirely certain where I’ll begin!

Hitting 12

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It may be International Women’s Day, Jedi Day (thanks to Mark Hamill’s Hollywood star) and the eve of National Science week, but in our household, there’s only 1 thing that March 8th marks and that’s young Master M’s birthday. Except this year he’s not quite so young, having hit 12 years already – and just how did that happen? – and I can’t believe that this will be the last year that we only have 1 teenager in our household.

Today has been a great day at school for my youngest and despite a reluctant start to the day, he came bouncing back to the car at 3.30pm, keen to share everything that had been good about it. It’s not been the celebration that perhaps it might have been given the topsy-turvy nature of the last 2 weeks for our family, but it will be the celebration that we want it to be.

Happy 12th to my beautiful, strong, sensitive boy; who pushes the boundaries at every step, but has a true heart of gold xxx

Old-fashioned manners

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My kids aren’t perfect – believe me I know – and all too often there are those moments when I wish they’d remember the manners we’ve strived to instill in them over the years. They’re not always brilliant at doing the littlest of things that would make a big difference and I know that’s something that can frustrate my Mum (Hint: it does frustrate her and she might have mentioned it just once or twice to me in the last couple of weeks) Both G and M are a quirky mix of grown-up attitudes – due to their life experiences with chronic health problems – and a lack of rational thought because they’re both still very much children at heart. They’re tentatively challenging the boundaries set them by family members in particular; and sometimes not so tentatively at all; whilst very much toeing the line outside of the home, which inevitably leads to tears and meltdowns, and not necessarily just from them. Insecurity, uncertainty and lack of self-confidence is overcome with bold talk and bravado, which can be misinterpreted as arrogance and rudeness, when the truth is that the child beneath it all is struggling with anxiety and striving to find a different face to present to the outside world.

However, the one thing that I insist happens every year without fail is something that almost certainly falls into the category of “old-fashioned” manners in this day and age. Just a few days into the New Year, I shared this photo of G and M sitting at our kitchen table working hard to write the thank you notes for the Christmas presents and, in G’s case, birthday presents, they had recently received. It may not be their favourite task in the world and it may take a little persuasion to get them started, but they both know that this is a non-negotiable part of the celebrations for both Christmas and birthdays and always buckle down to write them, often treating the job as a competition to see who can finish writing all their notes first. These are no great literary pieces, just a simple acknowledgement of those family members and friends who have remembered them at this time of year and taken the time to buy and send presents that are always gratefully received.

M views me as being a particularly evil Mum because I won’t let him type out his letters, but rather insist that we take advantage of the opportunity to draw faint pencil lines and practise his best handwriting. Why? Well, I suppose I just think there’s something a little more personal and thoughtful about receiving a handwritten note of thanks, though frankly I would be happy to receive even an email rather than absolutely nothing at all. No acknowledgement leaves me wondering if the gift has arrived at its final destination and I have been known to threaten to not send presents again when weeks have passed by and I’m still uncertain whether they’ve been received or not. Does this make me old-fashioned? Maybe, but good manners don’t cost anything and it’s important to me that my children develop an attitude of thankfulness for all that they are lucky to have.

World Prematurity Day 2017

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Another year passed and another chance to mark World Prematurity Day. It’s hard to believe that my preemies have gone from this…

to this….

Determined to win their fight every single day!

The Newest Addition

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Back at the start of this year, Mike and I managed to escape the UK and headed to New York for the week to celebrate my 40th birthday. It was a fantastic trip where we had so many fabulous experiences and yet a single event managed to interrupt our time away from home and left us having to consider how to break some very sad news to our youngest once we were back.

M’s beloved cat, Ginger, who had proved to be an invaluable part of our family as he brought so much comfort to M at some of the most difficult times of his treatment over the years, was hit and killed by a car on the main road near our house. My Mum, who was looking after G and M whilst we were away, somehow managed to keep this news from them both, even though they were checking in at home every couple of days to feed the cats and M’s dragon, Leo. I knew that this would be hard news for M to hear and feared a similar reaction to when we discovered one of our twin black cats had suffered the same fate 6 years ago when M was just 5. Back then, M had spent the entire evening and much of the night in tears and refused to eat for nearly 24 hours, an experience I hoped we’d be able to avoid.

Both children were upset when we finally broke the news, and although G’s response was fleeting, M struggled almost as much as we had expected. Much to my relief, the effects of this loss were not so long-lasting and within days M had moved on to what was obviously to be the final part of him coming to terms with the situation: the request for a new kitten. Knowing our son as well as we do, this didn’t come as any surprise to either Mike or me and we had already agreed on our answer. We would consider getting him a new kitten, but it would need to wait until we had got through SATs, past our summer holiday in Greece and were settled into the new school year.

Much to our delight, M could see the sense in this suggestion (something that doesn’t often happen) and happily agreed to delaying our search until the end of the summer at the earliest. Over the following weeks and months, G and M discussed at length what they were hoping for in a replacement pet. It had to be a kitten (because they’re cute), it had to be ginger (because Ginger was) and it had to be a boy (because…well…just because). Almost as soon as we arrived home from Greece, the search began and I spent the next couple of weeks online to find out what kittens were available in one of the many cat rescue centres in the area. To our delight, my enquiry about a different set of kittens led us to the discovery of the delightfully named “Bill and Ben”, a pair of ginger toms who were both looking for a new home.

Despite the best entreaties of G, who fell in love with “Ben” when we met them for the first time, and the surprising expectation of both Mike and my Mum that I would come home with both kittens, I managed to stick to what we had originally agreed and so it was that “Bill” joined our family at just 10 weeks old. He has been a source of great joy and many giggles since he first joined us at home, though his current tendency to bite everything in sight, particularly ankles and feet, has led to some frustrated shouts of pain too.

Now at nearly 4 months old, I take great pleasure in introducing you to the newest addition to the 7Y2D household: Biggles!