Quality of life

Over the last two weeks I’ve been watching, “My baby’s life: Who decides?” on channel 4. It is filmed in Southampton’s paediatric intensive care department and follows the stories of several patients. The program deals with some difficult questions about quality of life and what level of intervention a child should be put through.

As a mum of a profoundly disabled child, we are frequently forced to confront these issues. While William has never, so far, needed an unplanned intensive care admission or to be ventilated (other than for surgery), we can say with a fair amount of certainty that one day we will be in that position. We have had many many discussions over the years about what level of intervention we want when William becomes very poorly. Here and now we make choices every day about the level of medical intervention we use. William has twice daily nebulisers and chest physio, and frequent suction to try and keep his lungs working as well as possible for as long as possible. Our respiratory physio is applying for another piece of equipment to further help William’s lungs. 

Watching the program left me with mixed feelings. On one hand I found it interesting seeing the depth of discussion that goes on amongst the medical team about what is right to do for each child. It’s resssuring to know that drs aren’t making big decisions lightly and are involving a big team in the planning and difficult decisions. It was also reassuring to hear most the drs acknowledge that were it to be their child in the position of some of the children in the show, they would perhaps feels very differently than they did as the child’s dr. 

The point was made that we’re able to keep more and more children alive for longer with various expensive medical interventions, in the hospital and the community, but the NHS and Social care have finite funding. I have seen just in the last few years how things are changing as funding becomes tighter. These are discussions that need to be had or we will just end up saving the lives of children who society can then not afford to support. 

As parents, steve and I have always wanted to prioritise quality of life over quantity of life for William. What this looks like is different for all parents though. We have an idea of what level of medical intervention we will try and when we say enough. None of it is easy to plan for but as a parent you go with your gut and what you feel is right for your child. That might change over time and for it is very fluid and guided by William.

The part of the program that left me with a feeling of unease was when the drs talked about quality of life, and in particular around an older girl who seemed similar to William. There seemed to be an idea that because someone couldn’t eat orally, couldn’t walk, couldn’t talk and had limited cognitive understanding, their life was automatically of a poor quality. 

There’s no denying that William’s life is very different to that of a typical 7 year old. There are many aspects of it that are hard, unpleasant and sad. I would not change him for the world, he is perfect to me, but he does have a broken brain. But, just because william is unable to do most the things every else can do, does that mean his life isn’t worth living? 

William does not experience life like I do. He is profoundly cognitively impaired. As far as we can tell, he has no understanding that he is different. He holds no worries for the future or fears from the past because he is only conscious of the here and now. The awful seizure he had one minute is forgotten the next. While I sit and type, William lies next to me laughing his socks off at who knows what! All he knows is right now he’s happy. I dont know why he’s happy or what’s making him happy, I don’t know if he knows I’m here with him or if he’s enjoying the peace while his sister’s out. Maybe he’s just happy to be in his favourite position - lying down! 

He will never have the opportunity to experience many of the things we consider wonderful in life. He’ll never fall in love, hold his baby in his arms, taste Ben and Jerry’s or look forward with great excitement to a family holiday. But he’ll also never know what it feels like to have his heart broken, to be lied to and let down, to be rejected or to be bullied. 

If I compare my life to William’s, of course it seems unimaginable! How I’d hate to lose my ability to communicate, to not be able to enjoy chocolate or drive myself where I wanted to go. How vulnerable would I feel relying on other people for everything I need! But you can’t assess William’s experience of life in that way because he doesn’t start from where i start from, his view point starts from where he started from. 

I don’t agree with preserving life at all cost because I don’t believe it’s always in that person’s best interests but when it come to complex people like William we absolutely must listen to those closest to them. Only those people with them day in day out have a good understanding of that person’s experience and enjoyment of life. 

When the time comes to make those really awful decisions about William’s future I hope that Steve and I will be listened to as William’s advocates and voice. But I also hope the team around us will sensitively discuss what we are facing and guide us to the right decision. I hope we won’t be blinded by our desire to keep him with us forever, but know what it is the right thing for william. When to give him another chance and when to let him go. 

When "a William" gets “a cold”

We suspected yesterday William might be coming down with something. He was sleepier than usual, pale at times, requiring lots of extra suction and he’d sneezed! By bedtime we were sure he was unwell, he’d sneezed more, so the sats monitor was out (measuring his heart rate and oxygen levels in his blood) and his oxygen was on. We got into bed wondering if he’d sleep well or if we’d be calling an ambulance in a few hours.

Cracking out the oxygen supplies

Overnight he woke us around 4am coughing and his temperature was up. We gave paracetamol suppositories, suctioned him and went back to bed.

By this morning the “cold” was in full swing. Steve did his usual two and a half hour morning routine, upping the strength of his saline neb to help loosen the gunk in his airways. I then took over when Steve left for work, not before emailing our amazing symptom management nurse with a couple of questions about how best to manage this episode. Within the hour she called me back and took a history of what was going on and offered to drop by in the afternoon to check him out. She sent an email round to all of William’s medical team to update them on the situation and on what action she was taking. She suggested we collect a sample of William’s sputum (the gunk he coughs up) to send off for testing and made calls to arrange that. 

Sputum trap!

Shortly after our continuing care nurse called to arrange collection of the sample and talked me through how to collect it as it had been a while since I’d done one. I forget to ask how much will be enough so then call around the symptom management team and Holly ward checking if I’ve collected enough. Meanwhile I’ve moved William downstairs in his chair for another neb and the suctioning is non stop! He still needs his usual morning water and nappy changes on top of six hourly paracetamol suppositories and eight hourly diclofenac suppositories. Moving him round and hoisting him is trickier than usual because not only is he attached to his insulin pump but also the oxygen and sats monitor. Everything is slow!

At midday a health care assistant arrives to collect the sputum sample. After more meds and nappy changes, I give an extra neb and round of chest physio. During the neb his sats really pick up but his breathing rate quickens a lot and he looks to be working harder to breathe. Once lying back down he slowly settles again but his sats are worse!

We finally sit down for lunch at 1.30. I have mine first (I like to go by the same principle as when putting your oxygen mask on in an airplane...sort yourself first or you’ll be no use to others!). Before I start William’s lunch he needs his blood ketones and blood sugar testing as per usual and so far all is good. It takes half an hour to give his lunch and then it’s time for another nappy change! 

Our symptom management nurse arrives at 3pm to assess him. She takes an updated history of how he’s been and listens to his chest with a stethoscope. She thinks there are crackles lower down in his lungs so we agree to start him in his oral antibiotics which we keep at home for a situation such as this. The “cold” has become a chest infection. William’s seizures have been getting worse since lunch and while she’s here he barely stops seizing. She agrees to come back and review him on Friday (if we don’t end up in hospital) and emails the medical team and me a thorough update of her findings. 

At 4pm our Tuesday carer, Daisy, arrives to help out. She sorts William’s afternoon water out while I do a blood glucose as his continuous glucose monitor alerts us he is high (which is typical when you’re ill and a diabetic). We give some extra insulin to help bring it down and Daisy begins the long evening process; more nebs, chest physio, changing, washing, nappy etc etc while continuing to suction frequently.

I make up the antibiotic medicine ready to give and then set about trying to get hold of William’s neurologist to check with her whether I can start William on one of his extra seizure medications. Thankfully she’s in today and calls me back quickly and we have a plan. 

I then finally sit down to spend some time with Eliza while Steve makes tea. We all have tea together but William continues to have lots of seizures throughout the evening. We give him his extra epilepsy medicine and hope it starts to work soon. His sats are a little better this evening thankfully but then his temperature goes up higher than it has all day. At 8pm we give more meds and daisy gets William to bed. Steve inserts William’s new glucose sensor into William’s bum cheek to warm up ready for tomorrow. His insulin pump alarms as his blood sugars have gone very high after tea because of being ill so we do an extra ketone check and give more insulin. 

It’s finally time for us to get to bed but not before Steve sets alarms to move his sats probe in the night and to give more meds to help his temperature. Tomorrow it’ll all start again, but hopefully be a bit less full on!

This isn’t unique to us, this is what “a cold” looks like for many people with complex health needs. This is why we avoid exposing William to germs wherever possible. It can be life threatening to him and completely overtakes our day to day life. 

Despite being a bit worn out this evening after a day of nursing, I am so grateful for all the resources we have now to manage these episodes at home for longer; our symptom management nurse, oxygen, sats monitor, nebuliser, the acheeva, medicines, our awesome carers, grandparents and friends helping with Eliza, suppositories!, blended diet, and a fantastic medical support team in the background if we need to call on them. 

Back to school

This week was back to school time for William. I always find the start and end of the school years quite emotional...thankfulness that we've made it to another year, worrying what new problems this year will bring, wondering if he'll make it to the end of this year. It can feel like we're on some kind of countdown, counting down William's life in school years. It's not easy.

This September has felt particularly difficult. I am reflecting on last year which brought us a big surprise and wondering what's around the corner for William. It seems this summer has been a great one for many of his school friends in many different ways with lots of celebrations of different achievements. And yet for William there's never anything to celebrate, he never makes a step forward in his health, he never develops a new skill. This summer has seen a step back with seizure control and more difficult conversations have been had. I've just been wishing for something good to come William's way for a change.

And then I got to thinking and chatting with my lovely friend and William's carer, Michele, and I started to see it all a bit different.

I've felt for a while that in a way William shouldn't be here. If you look at the cold hard facts of his medical needs you can wonder how is he still here. Tonight I've been reflecting;

• In July 2010 my unborn baby boy was diagnosed with a devastating brain malformation. The radiographer told us he might not survive until birth, the neonatologist told us he would never got to school and Wikipedia told us he'd unlikely live past 2.
• In May 2011 William stopped breathing in the car either as the result of a seizure or chest infection. Steve perform CPR on the hard shoulder and a passing police car picked us up and blue lighted us to A&E.
• In June 2011 we put a DNR order on him, he was having frequent seizures where he would simply stop breathing. Our consultant told us he had a very severe case of epilepsy in infancy and we were not in a good situation. It was a very real possibility that he might not make his first birthday.
• In September 2012 our consultant returned from a years leave and told us she hadn't expected William to have survived the year she was away.
• In  April 2015 we met with the respiratory team at our local major hospital. William was struggling with his respiratory health in several ways. The lead PICU consultant told us he was surprised William hadn't had an intensive care stay as a result of a chest infection given how he was presenting.
• In May 2015 he developed a chest infection and we thought our first PICU stay was upon us. But the situation turned around over night.
• In October 2016 William went into DKA with un-diagnosed diabetes. We were told he'd been maybe 48 hours from death had we not acted when we did.

So you see, my boy might not be improving but he's living, and he's more well than he should be. So we might not be celebrating a new skill or seizure control but every day we will celebrate that he is with us. And we will thank our faithful God that we've already been blessed with more days and more good health than anyone thought we might get. And we will pray for so so many more good days. 

Extension

Three years ago our lovely friends Michelle and Sam walked from their house near Kettering to ours in St. Ives to raise money for William. They did an amazing job walking all day and raised lots of money that we put towards a specialist buggy for William. We have used this buggy soooo much and it enables us to do things with William which we wouldn't be able to access with his wheelchair.

On Saturday, Michelle and Sam have decided to do it all over again to raise some more money for William! We are so grateful they have decided to take this on again knowing how hard it was last time!

Thank you so much to everyone that has sponsored them already! We would like to share a bit more about what the money will go towards.

A few years ago we had our home adapted so that William could continue to live in it. We had a through floor lift installed to get William upstairs, four ceiling track hoists and a wet room with shower bench. Now William has got so big we rely on this equipment. We can no longer carry him upstairs or lift him. The adaptations and equipment we have are so important and vital to our everyday lives.

As William has grown, changed and become more medically complex and we have come to completely rely on the adaptations, we have started to find some aspects of it aren't meeting his needs anymore so are applying to have some more changes done. The plans have got through the first stage of approval but we've still got a way to go. Initial estimations are that we are looking at needing around £50,000 for the work. If the plans get the go ahead, £30,000 should be provided by the council which leaves us needing to find around £20,000. If the plans don't get approved we would need to fund the whole thing our self, which seems impossible!

We want to move William's bedroom and wet room downstairs and get rid of the lift, which will require an extension on the side of our house. There are a number of reasons why we want to do this and I won't bore you with the details, but one of the biggest reasons is William's declining respiratory health. William needs regular suctioning when he coughs to stop him choking on his secretions. If he coughs while in the lift we cant get to him to suction. Also when William is unwell he often struggles to sit up and we find his oxygen saturations drop. However to get him upstairs we have to sit him up to go in the lift which is far from ideal. At times we can only get him to bed by compromising his breathing.

We have many other reasons linked to the amount of care we now have in the home, not having enough space for his ever growing medical supplies, increasing size of his equipment (wheelchairs and standing frame), reducing hoist transfers and quality of life.

We want to do everything we can to make sure William will be able to live at home for his whole life, however long that will be and however complex he might become.

Holidays with 'a William'

One thing we try and do every year as a family is go on holiday! Planning a holiday when you have a medically complex disabled child is something of an ordeal...

The Planning
First we need to work out where to go! We tend to holiday with grandparents and my sister and brother-in-law so we have 10 people in total. We love spending time with them all but it also gives us gives us some help with cooking and caring for Eliza and provides us with a back up if William were to become unwell away from home. William needs his own bedroom due to his nocturnal activities so we have to find somewhere with six bedrooms. It needs to have parking nearby, no steps to the front door, a downstairs bedroom and ideally wetroom, no narrow corridors or doorways, room to manoeuvre a mobile hoist, ideally within 30 minutes of a decent hospital with A&E, not so remote that we don't have phone signal in an emergency, with activities for all ages located nearby and ideally within two hours of home. It's nice if we don't need to load up into the car every time we want to go out and to be able to do things close to the house so we can nip back for nappy changes. And of course it needs to meet my decor standards (no patterned carpets and only white linen allowed) and be nicer than my house so it feels like a proper treat to be away.

The Preparation
As the holiday approaches there's a lot we need to get ready. In order to reduce the amount of work we need to do when we're away we pre-blend most of William's meals for the week (plus a few extras for when we get home). In the run up to this holiday we blended 7 batches of food (28 meals), all labelled, carb counted and bagged up. We have to call William's oxygen delivery company and arrange with them and the rental agency for a delivery of oxygen to be make to the house on the day of our arrival and then collected again when we leave. We have to make sure we have enough medicines and equipment in stock and plan prescription ordering around when we'll be away.

The Van!

The Packing
For the first time this year we have hired a van to take on holiday. That's right, my six year old son is such a primma donna that he demanded a whole van to take his luggage on holiday!
William has got so big and more difficult to manage physically so to make it as easy on him and us as possible we decided we wanted to take the Acheeva bed. As we're only 90 minutes from home it was easy to take two vehicles. The van has enabled us to not only bring his acheeva but also his indoor chair, his buggy, his offroad base, his full sleep system, a mobile hoist, his bath chair as well as all his medical supplies and clothes.

Packing up!

We take a lot of stuff with us "just in case" and it quickly adds up to a lot of stuff! We have a big packing list that we work to every time we go away anywhere which helps but I always end up short of time and majorly stressed by the time we actually manage to set off!












The Destination

Chest physio on the acheeva

Family dinner time!

I love that hour after you arrive at your holiday home and explore your new surroundings. Where we are staying this week is a particularly massive amazing house so exploring it took a while! Then began the task of working out who would go where. William always gets first dibs! He had the choice of two downstairs rooms this time. We quickly discovered a problem in that the room earmarked for him had a staggered doorway so we wouldn't get his acheeva in the room. The second bedroom was better but the bed sat too low to the ground and we couldn't get the hoist under it. Back to the first bedroom but the hoist didn't even go through the doorway so the second bedroom it was! After a trip to the local timber yard for some blocks to raise the bed we were good to go! When I pick a holiday home I scour photos and floor plans working out what will and won't work. There are some details though that you can't foresee and although insignificant to most they can be massive hurdles to caring for William.
The house we are staying in this week is super spacious, it's such a treat! We have plenty of room for us all, William's bed and a parking area for all of William's chairs! I can get in such a stress at home about lack of space due to the amount of kit William needs to move around the house, that it's really nice to not have any of that to contend with this week!

Kitchen space for medicines and blending kit!

Wheelchair car park!

The Itinerary
Getting William from bed to out the door takes about 3 hours in a morning so we plan what we're doing every day so we know which days we need to start early with him and which we can be more relaxed with. We then need to take into account what will Eliza like doing? What will four grandparents like doing? Where can we change William? What will the weather be doing? What wheelchair is most suitable for where we're going? How long is William likely to be in his chair? Is he likely to run into difficulties with his airways and require extra equipment?
Visiting new places can be a bit stressful because we don't know what to expect. Today for example we visited the Holkham Estate. The visit was made much more enjoyable because their baby change was a bench rather than a small table so we could lift him onto it (just!), the cafe was spacious so his chair wasn't in the way, there were benches in the cafe so we could lie him out over lunch, the footpaths were good and disabled parking was available nearby. It can just as easily go the other way though too!

Why do we bother?
With all the planning, packing, stress and effort that goes into holidays for us we do often wonder if it's worth it. There are two main reasons why we keep going; firstly because despite all the difficult bits we actually have a lovely time. There are moments in there that are so wonderful. We've had a really full on couple of weeks with a lot of big meetings and appointments. We have more to come when we get back. But being here in the Norfolk countryside surrounded by big skies and fields is my time to breathe out and switch off. It's time to just be us.
Secondly, we do it to create memories. I am massively into memory making, especially for us as a family around a life limited child. I take hundreds of photos on holiday and turn them into photo books so one day they'll form part of our physical memories of William. We only have a small window of time to enjoy life on earth with William before we'll be separated for a while, so for now we do everything we can to enjoy life with him, even if it takes a lot of effort. One day we will look back and remember all the wonderful special things we did with him and the stress will be forgotten.

What sort of mum?

I'm the sort of mum who has always wanted to have children.

The sort of mum who doesn't like being pregnant, hates the nausea and the pelvic pain, does not like labour at all and actually feels quite terrified when given a new baby to look after. 

I'm the sort of mum who doesn't get that rush of love when I first see my baby, because quite frankly it could be anyone's baby and I wouldn't know the difference. 

But I'm also the sort of mum who's love for her children grows as I get to know them and all their little ways. 

I'm the sort of mum who started off with no confidence in herself but then was given a very special little baby who needed a mum who could speak up for him and become his voice and advocate.

Now I'm the sort of mum who has become the sort of mum I never imagined I could or would be. 

The sort of mum who chooses to blend three meals a day in the hope her son's digestive system will not pack in. Who attends manual handling clinics to makes sure the headrest is just perfectly positioned. Who finds it really hard work to keep interacting with my son who won't interact back.Who reviews an EHCP draft with a fine tooth comb to make sure there are no loopholes. Who gets asked at every hospital admission what my resuscitation wishes are for my son. Who knows how to do the job of a pancreas. Who knows that that little noise means a great big phlegmy cough is coming. Who thinks through everything on my son's behalf and tries to imagine what his experience of life is like. Who finds her son's smile worth a hundred tough days. Who watches violent seizures with a complete mix of normality and heartbreak. Who is trying to find someone to update her CPR training. Who tries to explain to her three year old about death. Who thrives in an MDT meeting but finds a normal conversation a bit daunting. Who fights (in the friendliest kindest way) to get her son what he needs. Who has to hoist her son onto her knee if she wants to give him a cuddle.The sort of mum who doesn't want to live with regret that my son didn't always get my best. 

I'm the sort of mum who will never be able to turn off the worrying but who would sometimes like to be able to turn off from the routine of the nebs and the physio and the hoisting and the feeding and the blood glucose testing and the nappy changing. The sort of mum who would just like to have a little break now and then to do something a bit nice (that doesn't involve military operation style planning).

But to be the sort of mum who gets a little break now and then I've got to be able to put myself first and ignore what I know is right and best and safe for my son. I have to be able to let strangers (all be it highly trained strangers) take over my job as my son's advocate, voice, interpreter, pancreas and mum. But I just can't do that.

So I wish instead someone could understand the sort of mum I am and see my need for a little break but see my bigger need to do my absolute best for my son. I wish someone would see that it's taken a long time to build a little team of people who I can trust and who know how to do my job just like it needs to be done. I wish they'd see that if he's not with me he should be with one of them because that's what's best and safest for him. I wish they didn't just have to see costs and red tape and policies and insurance problems. 

Every child is different, every mum is different and every family and their needs is different. I wish sometimes we could stop and listen and work out what are this family's needs and how do we best meet them instead of squeezing everyone into a one size fits all option. Choices for care have improved massively but I think there's still so far to go in making the family feel listened to, understood and respected.

A whole new world!

A whole six months and 6 days ago have passed since William's diabetes diagnosis. I wrote the blog below just after it had all happened.

What a weekend we have had!

On Thursday morning William decided not to wake up, in fact he slept nearly all day. He had a mild fever in the morning so we kept him home thinking he was brewing a little respiratory infection. We decided to monitor his sats and give him a little oxygen as he was so out of it. By Friday he wasn't much different. A little more mild fever but easily fixed. But still he slept and looked a bit worryingly pale. Of most concern was that his heart rate was 120-130 when zonked out asleep rather than his usual 70-80. 

What followed was a serious of perfectly arranged events. I had to pop to the hospital to pick up supplies for William. I had put off calling the hospital as I was worried they would want to see him and I didn't think he was that poorly. Instead I decided to ask to speak to his consultant for some advice when I got there to pick up my supplies. I so nearly didn't ask as I didn't want to take her time but outpatients was totally empty and I just went for it. Thankfully she was there and came straight out to see me. After explaining Williams' symptoms she told me he needed seeing, as an elevated heart rate with no obvious cause was cause for concern.

Thankfully Steve had cancelled his trip to London to work from home as we were unsure which way William was going to go. So I drove back home, collected Steve and William and back we came. Thankfully the consultant on call was the diabetes specialist! He did all the usual checks and we suspected he would diagnose the start of a viral infection. He decided to check William's blood sugars, which is not a standard check ever done on William, anticipating they might be low but the reading came back as 'HI' indicating a result too high for the monitor to read. He did two more tests to check there hadn't been an error and they both came back HI too. This indicated a more serious problem was going on. They quickly checked William's ketones and found that they too were also much higher than they should be. We were told William had diabetic ketoacidosis (DKA) and most likely had type 1 diabetes. Sepsis was also an additional possibility given his symptoms. My first thought was, "What have I done to give him diabetes! Is this because I have fed him a blended diet?" My concerns were quickly laid to rest by the nurse but I was still so confused how this had happened and what would it mean for William.

We were moved quickly to HDU and treatment was started for the DKA. We were told, had we not sought advice, William was maybe only 48 hours from death. He was checked regularly for signs of cerebral oedema, a rare but very serious complication, and we were very very worried.

Over the course of the night his numbers (blood sugars, ketones and blood acidity) came down and he was no longer classed as having DKA. The situation was no longer life threatening but now we had the big task ahead of learning about type 1 diabetes and getting William's diabetes under some control.

Type 1 diabetes is an autoimmune disorder, where the pancreas no longer produces insulin. The blood can therefore no longer absorb glucose from food without the help of insulin and this causes a series of problems. In order to treat this, insulin is given to the patient but it must be give in just the right amounts to regulate blood sugars. Too much insulin will give you hypoglycemia which is lethal if left untreated and too little insulin would give you hyperglycemia which could lead to DKA developing again. The amount needed will depend on the patient, how many carbs (glucose) they eat, their activity levels, how well they are, their hormones, the weather, what type of meals they have, how quickly they digest their food and numerous other factors!

Type 1 diabetes is nothing to do with being overweight, how healthy your diet is or any other factors you can control. Your pancreas simply stops producing insulin for not totally understood reasons. William developing type 1 diabetes on top of his many other diagnoses is just really bad luck. There are no links to his existing conditions. At some point his immune system attacked the insulin producing beta cells in his pancreas but the reasons for that are not really known. He joins over 29,000 other children in the UK diagnosed with Type 1 diabetes.

So now we have begun the process of learning about this new diagnosis and working out how much insulin William needs each day. So far his levels have been very variable and nowhere near what they should be. Each day his insulin doses get put up but we still have a way to go. We will need to be inpatient until they can find the correct dose for William and until we become more confident in managing it.

For William the fact that he is tube fed and has no control or choice over what he eats will make it easier on us to calculate his insulin requirement but the fact that he has no awareness or symptoms when his blood sugars are too high or low is going to be very tricky. 

So, back to now and we are 188 days into this new stage of William's story and mostly things are actually ok! Thankfully our diabetes team were quickly able to secure funding for William to have an insulin pump and continuous glucose monitor which helps us a lot in controlling the diabetes. However they are just tools and have taken a lot of working out! Between Steve and I and the pump and sensor we are performing the job of one of William's organs. Every day is different and despite being able to tightly control his carb intake, we see massive variations day to day in his control. We are so thankful for an incredible diabetes support team who have got us back on track, despite a case like William being quite unusual for them too! Our diabetes specialist nurse is so lovely and encouraging and always available to offer support. The team at the hospital also run a 24hr helpline in case of unexpected problems which is so useful.

Once every three months William goes to diabetes clinic and has a blood test called HbA1c which is used as an indicator to show how well your diabetes control has been over the last 3 months. The aim for diabetics is to get 6.5%. On diagnosis Williams was around 9.5% I think. A reading of 12-13% is considered very high. William's first two results since starting treatment have been 6.6% and 6.7% which is pretty incredible given his target range is higher than most peoples.

Diabetes continues to challenge us and complicate many areas of William's care but it feels safe to say we're conquering this mountain. I just hope there are no more new challenges for a while!