When we set out to start this blog we honestly thought we would have more time to write about our challenges and triumphs and in so doing help other moms and dads with raising their little T1D Warriors… Time really hasn’t been on our side! We have a few minutes spare and thought to quickly jot some thoughts down. We’d love to hear from some of you your thoughts, especially if you have had similar experiences and have some insight to offer. The Guardian Connect The Guardian Connect is a constant glucose monitoring device which is basically a sensor that is attached to Harrison and takes a glucose reading every 5 minutes. The nice things about it is that is syncs to an app on your iphone and allows you to monitor glucose levels in real-time and take the appropriate action for hypers and hypos allowing you to maximize your time in the “safe” zone. We have had several people asking our opinion of the Guardian Connect since having had Harrison on it for just over a month. This is our honest opinion so expect the untainted truth. Off the bat, given Harrison’s age, now 15 months old, I don’t think the device is actually right for him. The sensor is extremely sensitive to bumps, even the slightest, and if you think about a baby who’s really just discovering the world (and his legs) there is a lot of wobbling, a lot of falling, and a lot of bumping into things. You can’t exactly tell a young adventurous toddler that he needs to be careful and be still. Boys need to run and explore the world around them freely. Sadly, our little boy has presented with a nasty rash no matter what plasters we have tried, or pre-sensor-insertion techniques we have used. Each sensor (which costs over R300) lasts for 6 days – we have not made it passed 3 days on a single one. While we can rave about the device for the short intervals that Harrison has been able to wear it, we do feel short-changed for the simple fact that we can’t get the sensor to stay on long enough before it loses signal. Our medical aid has not covered the device and it is a lot of money to fork out whenever you need new ones. In saying all of that, even for the short time that we have been able to track his glucose levels, we can say the following positive things about it that we are sure every parent of a Type One Warrior will appreciate:
In the first week of having the device we were also able to identify regular trends of hypos that occurred at the same time every day indicating an issue with the insulin treatment we were prescribed. We have since changed insulin types and dosages and since then his levels have leveled out drastically. Thankful for people like Dr Claudine Lee If you’re in the KZN Midlands with T1D, or have a child with T1D, you may already be seeing Dr Lee, or have at least heard of her. She is a GP with a keen interest in Diabetes. She has been amazing in the treatment of Harrison, not only for his Diabetes but his general wellness as well. Dr Lee has bent over backwards seeking second opinions from other Paediatric Endocrinologists, given her knowledge and understanding that something was going wrong with the treatment that Harrison was currently on. Dr Lee has been there for us in so many ways: from fitting us in between seeing other patients, to giving us various different plasters to try because Harrison reacts so badly, to phoning through after hours scripts for us – the list is longer. This woman has gone above and beyond for us so this is just a special thank you to her. The biggest challenge
We have struggled so with what to feed Harrison, especially at dinner time. He thinks he knows what he wants and if you even try come near him with something new or different he will fight you tooth and nail before you force it into his mouth. Once he has eaten his allocated dinner begrudgingly and mom and dad sit down to eat theirs, he is there begging for every morsel of steamed carrot or veg that you just had to try force him to eat the night before... You know how the story goes. A plea to experienced moms and dads - share the secret to getting your kids to eat please - and the recipes! We're on a massive hunt now: searching for recipes and foods to try. He's still very young and too low a carb diet is not recommended. We're being as Low GI as possible! We will be sure to share our food journey on here because I think for most parents with T1D kids that are this young are going to face the same struggle with food.
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You two will never know how much you mean to Rowan, myself, and of course our dear Harrison. For every toe prick and glucose test, for ever insulin bolus and every rushed “sugar-feed”, for every nappy change (especially the poo ones Ing), for every tear you’ve consoled, for every hug, for every giggle you’ve spurred, for every nap you’ve had lying close to our boy, for every time you hold his hand, for every moment spent “weeding” in the garden with him, for every walk in the pram – for everything that you do – we could never thank you enough. Aside from Rowan and I, you are the only two people in the world who understand a little bit more about what we go through everyday caring for a Type 1 Diabetic, and one that is so little at that! Looking after a baby boy is one thing, but looking after a Type 1 Warrior is entirely different! You are both incredible and have stepped up to help us in ways we had no idea how to even ask for the help. You are part of a small group of people we call the unsung heroes who care for type one warriors! Thank you from the bottom of our hearts!
For the past few days Harrison’s glucose levels have been doing great but he has been fighting an ear infection which seems to be messing about with his ketones, however, this could be in combination with a new lower carb dietary adjustment that we have made as well. This morning, as I dropped him off at his Grossie (grandmother) he was particularly ratty so I decided to test his ketones before driving off. As suspected they were high: 1.9.
Aside from the additional bolus, several factors played a role in Harrison’s levels dropping to a level that our meter just spat out a “Lo” reading for. When we got the call (my husband and I each at our place of work), and the words “he’s not taking in yoghurt or juice”, and then “he’s jerking” our adrenalin just kicked in and we flew to our cars to get to Harrison as quickly as possible. Elna, Harrison’s wonderful Grossie, remained as calm as she could and with Rowan talking her through it over the phone managed to give Harrison the Glucagon injection he needed to stabilize him again! Today had to be the scariest day of our lives (aside from the day Harrison was diagnosed). Grossie, my superheroine still dressed in her nightgown, shoved Beauty and Harrison into her car and flew down to the nearest Dr where we met her. By this stage he had already stabilized and was looking much better. The Dr gave him a quick once over and was very understanding telling us that we did the right thing, that it was bound to happen, and that it will happen again. This is the life of a Type 1 Diabetic. We have spent the past few days signing papers and organising the new Medtronic Guardian Connect CGM for Harrison. If it arrives this week it will definitely not have come at a better time! After a day like today I seriously wish we had this device like “yesterday”, literally! The past few weeks have been somewhat trying in our little household. To surmise, we have been daring treacherous waters with no sign of calm seas ahead of us. Some of this is unrelated to our boy’s diabetes but unfortunately has an impact on his little life one way or another. As much as early December has been trying, this week has presented a small glimmer of hope making us feel a little more at ease with the year coming to a close and finishing on somewhat of a high note.
We’ve been paying close attention to constant glucose monitoring units and ones that are more affordable than the likes of the greats like the Dexcom G5. In our last appointment with Harrison’s Endocrinologist he mentioned the release of a much more affordable unit that will be in South Africa in December. The Medtronic Guardian Connect has landed and we are very excited to announce that just yesterday we officially applied for the unit for our little boy. This time next week our 14-month-old could be rocking a CGM device and have two parents whose minds are a lot more at ease! Our search for the unit was brought on by several weeks of unpredictable blood glucose highs and lows – the norm for a type 1 purely because there are more variables than just food to consider when dosing with insulin. Aside from lowering our long acting insulin to curb the mid morning and mid evening lows, we have also, with the help of our friend, Steph Joyner, a dietitian with a keen interest in diabetes, been tackling Harrison’s diet so that we can get his glucose levels under control. This change in diet, and the whole CGM unit coming into our lives, has us bouncing off the walls with excitement. It's really just been a few days of dietary adjustments and we can already see a massive improvement in Harrison's glucose levels. As we start trying new things and noticing the effects we will happily share our experiences and recipes with you. On the point of diet, some recommended reading material for any new Type One Warrior, or parent of a Type One Warrior, is Dr Bernstein's Diabetes Solution. Further to this, he has a YouTube Channel packed with immense information about his journey as a Type One himself, as well as his treatments etc. I am fast becoming one of his biggest fans! It's worth reading his book for an added and worthy perspective on the disease noting that he is one of the oldest Type One Diabetics alive without the long-term complications of Diabetes. We have had many comments on the above photograph of our little warrior - and I wanted to explain why we decided to use it as the header image for the site and our facebook page. Every month, since the first month after his birth, we have taken a photograph of Harrison next to this great big bear. We were a little late taking his 11 month photograph as we normally need to set aside a few minutes over a weekend to capture it. Instead of the 28th of September we ended up taking this picture on the 2nd of October... just three days before Harrison was diagnosed with Type 1 Diabetes.
There's the saying that a picture says a thousand words, but among them, in this instance, Diabetes was not one of them. Harrison has shown us time and again that he is fearless and courageous and can conquer anything. Maybe we gave his strength of will a little too much credit because in this small moment of laughter and smiles, we had no idea that antibodies were busy doing a number on our little boy's pancreas. In fact, we had the conversation again today about the day he was diagnosed and the words that came out of Dr Bisseru's mouth as she gave us the news. She told us, using her hands to show us our happy boy playing quietly on the bed in front of us, that "this is not the picture of a sick baby - this is not the picture of how sick your baby is right now - I need you to understand that your little boy is very sick". We were taken aback. She proceeded to take us through the numbers and initial test results and explained just how close we were to absolute worst case scenario. Our baby's life was saved by the beautiful Dr Bisseru to whom we will forever be grateful! Because of her we see these smiles everyday! Because of Dr Bisseru, we were introduced to our Endocronologist Dr Kubendran Pillay, who has cared for and taught us how to care for and raise our little man with Diabetes. This photograph says so many things for us, especially now. It gives us hope that our little boy can handle this and anything else thrown his way. Going back to the saying that a picture says a thousand words - I feel like, in one moment it definitely can, and then in another, it can say so much more. It all depends on your frame of reference. On this day I guess I thought it was just a beautiful photograph of my beautiful boy, but today there is a whole story behind this photograph: when we were first introduced to our Type 1 Warrior.
A friend of ours with a T1D warrior (now 16 years old) suggested PediaSure as a meal substitute! What a relief to have found something that could sustain our little boy for a couple of days whilst his little throat healed. His sugar levels were haywire at the height of his sickness but we just kept treating with insulin to keep his glucose levels in a healthy range and his ketones down.
We thought we'd share with other T1D parents the wonderful gem that is PediaSure. It has the same sugar content as that of most formulas so for a baby starting out on solids, or is a picky eater, or is sick but needs the sustenance, this was a perfect meal replacement! This is a bit of a lengthy read but it encompasses a few weeks worth of our life. Harrison was born on 28 October 2015. For about a year our lives were bliss. We had a bouncing baby boy who was always in a great mood. We had barely seen him unhappy. We had it good.
Our little boy began walking at 10 and a half months old. He was reaching all of his milestones slightly ahead of schedule. We noticed a slight drop in weight gain around this point not thinking anything of it, or at least pinning it to his increased activity. We were such proud parents, we had blinkers on. Around this time Harrison had an increase in thirst. We hadn't fully recognised this until we spent a whole weekend at home with him without visitors or interruptions. Around the same time we took him into the GP for flu-like symptoms where he was put on a course of antibiotics and cortisone. Unknowingly, the virus he had was working its way through his body at a rapid rate, completely flat-lining his little pancreas from producing any insulin. Fast forward a few nights, Harrison was irritable, couldn't sleep unless he was drinking on a bottle of water, and noticeably weaker: not walking, barely crawling, and sitting was even a great effort. This was when we suspected perhaps it's not just thirst to soothe his sore throat. On Wednesday, 5 October 2016, we took Harrison in to see an incredible paediatrician at the Hilton Life Hospital, Dr Bisseru. Upon checking his glucose levels in her rooms our boy's glucose was extremely elevated. Dr Bisseru admitted Harrison immediately for a full work up. As initial test results came in, our baby boy was fast tracked from the paedeatric ward to high care for closer monitoring and observation. At this point nobody had told us yet what was going on and a nurse had let it slip that our baby boy had Diabetes. A short while later Dr Bisseru arrived to discuss Harrison's test results and it was confirmed that he had Type 1 Diabetes (T1D) and that his current health status was critical. We had a very sick baby. That night we had no sleep. They checked Harrison's glucose what felt like every 10 minutes (it wasn't, but it felt like it), drew bloods several times in the night for more tests... He was attached to a drip to bring his fluids up, and in conjunction with the insulin drip help bring the glucose levels down and flush out the ketones. It felt like a week and it had only been one night in hospital. The shock was turning into fear, anger and frustration. But I had this one resounding thought that kept running through my mind over, and over, and over again: If I was offered a glimpse to any point in time in the future I would ask to see just one thing… to see that we made it through, that we did our job as parents and raised up our beautiful son to be fully functioning and successful in his own right. I would want to see that despite his Diabetes he is fit and healthy and life has no limits for him. I would want to see him happy and thriving. It's not possible but I am learning to live like it's inevitable! We will make sure that we do everything in our power to provide this life for Harrison. Thursday, 6 October 2016, saw Harrison and I take our first ambulance drive as they transferred us to the Life Hospital in Westville where we met with Dr Kubendran Pillay. Someone who was set to become our lifeline as we navigate a world of insulin injections, blood glucose strips, hyperglycaemia and hypoglycaemia. Off the bat he told us that we won't be leaving the hospital until such time that he feels comfortable we can manage the T1D ourselves. Over the course of the next day or two Harrison's glucose levels slowly stabilised and ketones came right down. Each day Dr Pillay came into our High Care room in the Paediatric Ward, he taught us a little bit more about the life we have ahead of us. A sort of Type 1 Diabetes 101. Within 5 days we had started administering insulin and checking our little boys glucose levels every 2 hours. We were on top of doing things by ourselves. Wednesday, 12 October 2016, we were discharged and sent home to fend for ourselves. So... my first paragraph spoke of how our lives were complete bliss up until the point of the diagnosis. It still is bliss but now we have an unexpected guest (the Diabetes) that we have to keep in control and in check. We still have it good. Life would not be the same for us if not for Harrison being part of it. In the words of Dr Pillay we just have to "look after the baby, not the Diabetic". As far as possible we are trying to do this. |
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