365 days =
550 injections
5110 blood tests
4 Intravenous cannulas
72 Subcutaneous cannulas
1 999 call and a life saving glucagon injection
6 Inserted cgm cannulas
9 Hospital admissions
8 Clinic appointments
28, 884 Carbs counted
...and I've lost count of the jelly babies!
Today is 'Ivy Bravery Day'. April 13th, is her diaversary, the anniversary of her diagnosis. This time last year she was so seriously ill that we came close to losing her. Every day I feel blessed for every breath she takes, every smile, every cuddle, every time she says "mummy best" and looks at me with those cornflower blue eyes. I love this little girl more than I can ever express. April 13th her life was saved and ours changed forever.
I will always be more than grateful to the wonderful team of doctors and nurses who worked relentlessly for hours to stabilise her. The team who taught us to care for her and to enable this little girl, full of life, to live her life to the fullest.
This has been the hardest year of my life, I have experienced stress and anxiety like never before. My heart has been broken but with the love and support from our wonderful friends and family, it has almost healed. I will always grieve for the carefree life that I imagined Ivy would have; she will face the type 1 battle for the rest of her. As her mum I would take it away from her in a minute and take it myself but that is beyond me, until there is a cure she will have Type 1 Diabetes. What I can do though is I can carry the burden, I can fight her battle and I can protect her from the condition for as long as possible. Although (as many of you know) she already wants to be a part of it, she tests her dolls blood all the time, they all have cannulas and she helps to weigh and carb count her food! All of which we have never deliberately shown her. She is a sponge and learns so much from her environment. Sometimes it's impossible to keep it from her!
I had never truly appreciated the importance of medical research; of course I know how important it is but until now I would have read about a breakthrough with mild interest and probably not given it a second thought after I closed the browser or magazine. Now however I get so excited about stem cells, encapsulation devices, smart insulin, beta cells bionic pancreas'. The list goes on. The breakthroughs being made in diabetic research are ongoing and fabulous. I firmly believe that Ivy will see a cure in her lifetime and we would sell our house if it meant we could give it her.
I want to thank Sam for being my rock. These things are sent to try us and without him I would have burnt out. The best daddy Ivy could wish for.
My friends have amazed me with their love and understanding, with their generosity of time and shoulders to cry on. Many of them have risen above what a friend can do and unfortunately I have some who have shrunk into the shadows. I am ok with this, I know that friendships are organic and some come and go, I am in love with those who stayed.
This year Ivy made a very special friend, a little boy called Iver, he also has type 1. You honestly couldn't have written it. His mum is also called Emma! some people are meant to be in each others lives! Ivy and Iver are already firm friends. When they are together blood tests and pumps are normal, the most normal we could ever wish for them to be.
Ivy is a social butterfly, always with friends, she loves them and they love her. They will help Ivy lead a life full of fun. Be them 1, 4, 6 or 17 they already looking after her, they are curious and want to be part of her type 1 life..even.if it is just for the jelly babies sometimes..
Of course our families have been incredible this year, you can't choose your family but if you could we would choose ours!
This year has taught me a new kind patience. A patience for lack of understanding. Some people don't get type 1, I have heard it all "why haven't the doctors got it under control?" "When will she grow out of it?" "It's not cancer" "It could be worse". This one I find hardest and want to scream sometimes. There are many horrible conditions, type 1 is one of them, it is relentless and exhausting for Ivy. At this moment in our lives it is the worst. Day to day it requires constant brainpower and thought, a balancing act between food, insulin, exercise, stress, excitement, growth spurts, teething, illness and the weather. Yes the weather. All of these factors have an impact on Ivy's life and how she feels!
The last few weeks have had a strange feeling of building suspense. I knew it was coming, I have had flashbacks of how poorly she was. Her little body covered in wires and cannulas, her head shaved on both sides. I have kept myself busy by making her anything I can sew. I made her a magical teepee, a dress, a new pump pouch and most recently a Sugar Fairy. A fairy to look after her. This weekend, the one where we are giving diabetes the finger, it has reared it's ugly head and due to an infected cannula site Ivy has had 3 days of hyperglycaemia. Her bloods are running high and she has felt awful. She hasn't been able to sleep and yesterday she cried for an hour. I gave her the fairy early and explained that she knew Ivy was feeling sad and wanted to make her feel better. Ivy took her in her arms, sat under her princess canopy in her book corner and cuddled her for 5 minutes and didn't put her down for a further hour. The fairy worked her magic, thank god, she took me hours to make and can you imagine if Ivy just tossed her to one side? :)
Ivy bravery day will be a day for Ivy. Her day to celebrate how wonderful she is, for the highs and lows (literally) that she faces every day of the year. For her first Bravery Day, we are going to the zoo. She loves the story, Hug, about a chimpanzee who is looking for his mummy. Tomorrow she will see Bobo! We want to create a million positive memories for Ivy to treasure. It is a blessing that she was so young when she was diagnosed, she won't remember anything from April 13th 2014. All she will know is love and support from everyone around her. Friends, family even her diabetes team at the hospital; a wonderful team always there listen to me, to guide me, to help me and to fight for the very best she can have. The latest pump. The best in constant glucose monitoring. I even have to be grateful for our GP who never questions Ivy's prescription requests, believe it or not, some families have to fight for test strips and even insulin..in the UK. It is insane.
We have come through this battle as a family, I am sure the first year will be the hardest but we are smiling. I still get moments of panic and anxiety but I can do this. Ivy is my inspiration. She can do this and she does it with an infectious and positive radiance. What's not to inspire? Our little type 1 fighting, icecream loving, superhero. Who will be 2 next month!!
Where has that time gone?
My message for Ivy.
I believe you are every kind of amazing. Unique, clever and beautiful. You are everything positive in this world. Smile every day and love as much as you can. Enjoy every precious moment of a life that was almost taken from you. Type 1 doesn't own you, you can do anything you want in life, go to India when you are 16! I will be terrified but dear friends have shown me that you can do it! Diabetes isn't the only thing in your future. I am so proud of you and honoured to be your mummy. Proud to be able to say we had a bad night because I would take a million of those to million without you. You are our miracle.
I love you.
Sunday, 12 April 2015
Thursday, 9 October 2014
Superstar
When our adventure began, 23 months ago and we discovered we would be having a baby, I was filled with mixed emotions. Excited. Thrilled. Nervous. Curious. Happy. From day one I kept a journal, full of the ups and downs of pregnancy, documenting every single piece of preparation for our little arrival. Not knowing of she was a boy or a girl was a blessing really because it meant slight control on our spending; since she arrived I have become a shopaholic for tiny girls clothes, god knows what I would have spent if I had had an extra 4 months to buy things! I planned to give Ivy the best start in life. The healthiest start in life and the most loved start in life. I think I did this and I am trying my best to keep doing this. Some days diabetes is all I can think of and I struggle not to talk about it all the time, when somebody asks 'hows Ivy?' I launch into a full recall of her past 24 hour blood readings. ."oh she's ok, had a hypo at 2am and after her juice and biscuits she didn't want to go back to sleep so we were up till 5. Her bloods were high by breakfast so she needed a correction, still high after eating..I think it was the cereal. Slow releasing so probably bypassed the insulin before it was put into her bloodstream.." when all I had to say was "she's great, she is obsessed with steps at the moment, all I have to do to keep her entertained is put a box next to the sofa and she's off..perfecting her new skill!"
I need to remember that Ivy has diabetes, it doesn't have her, with our help and support she will hopefully live a normal life, ideally it will be an extraordinary one full of adventure. Like it typically is at the moment, she doesn't know she has this life long, life threatening condition, she just wakes up every day wanting to go and feed the ducks, play with playdough or dance around the living room. Life is an adventure to her and after the last couple of weeks we have had, I couldn't be more thankful for her innocence.
Two weeks ago we experienced the darker side of diabetes, after several days of generally being very low and having had 25 hypoglycaemic attacks in 3 days, Ivy lost consciousness due to one. I had already treated a hypo at 1:20pm, she came up to the safe range and was back to bouncing around and playing, when I asked if she wanted to go to playgroup she leapt straight up and went to get our shoes, so off we went. In the community centre she was happily playing with sensory rice and wanted to do some painting, I popped on an apron, sat her on a tiny chair and after one splodge of yellow paint on the paper she screamed, arched her back and frantically started doing the makaton sign for food; something she does to alert us that she is going low. It wasn't even 2:00pm so I thought she couldn't possibly be hypo again but checked her anyway. Her blood glucose reading was 2.8, anything below 3.1 is classed as a serious hypo. I took her into a side room and thought I'd read her a story after giving her double her usual dose of glucojuice. She slumped on my lap and I called our Diabetes Team to get some more advise for treating these persistent attacks, whilst on the phone to the specialist nurse Ivy became really drowsy and I was urged by the nurse to call 999. Ivy's head flopped forward and when I tried to get her to respond to her name, her eyes rolled in her head and she couldn't focus on anything. Within a few minutes her head was back and she had lost consciousness, we couldn't wake her and she just lay there, to an outsider she looked like she was sleeping. The paramedic struggled to find the community centre and arrived 20 minutes after I had given her the glucojuice, he put Ivy on some oxygen and explained that she may need an injection of a hormone called Glucagon, but they're reluctant to use it on little ones unless they really have to. He checked her blood and she was now 3.8, still in the hypo range but 0.2 off the safe numbers. He explained that he would wait 5 more minutes to see if the glucojuice would still be working, another 5 minutes ticked slowly by but he finally checked again, Ivy's glucose levels had crashed to 2.6, I saw the smallest look of shock on his face before he resumed that calm exterior that medical professionals have, he simply said "she needs the glucagon now, pull her trousers down" he administered the hormone injection, which would cause Ivy's liver to expel all of it's glucose stores and kick start the body, it took Ivy about 10 seconds to come around and she was screaming, scrambling to get the oxygen mask off, I was so relieved she was awake, I didn't even think about what would happen next. An ambulance arrived to take us to a&e, as Ivy no longer had any glucose stores it was important to get her straight there, blue lights and sirens, because she had to eat something. I am sure it only took us 10 minutes to get there but it felt like an hour. By the time we got to the hospital, Ivy was back to her normal self, happily playing, at one point she had another hypo with absolutely no signs at all (diabetes is so bizarre in how it affects the body!). We had her pump switched off for 90 minutes, gave her 2 biscuits and her blood sugars remained normal and stable; a small part of my hopeful brain thought she was cured, sadly not, her pancreas doesn't work how it is supposed to and until there is a cure, that is just the way it is. For the following week Ivy had her insulin intake significantly reduced, her background insulin has been running at 20% of her normal amount during the day, this is the equivalent of her having 0.0005ml of insulin over a 24 hour period! You couldn't even put that tiny drop on your hand! Nobody really knows what has caused this sudden sensitivity to insulin, our consultant said that it isn't uncommon for smaller children to not need as much insulin sometimes. Diabetes requires such a delicate balance of so many factors, some of which are still unknown. Another theory is that she hasn't been absorbing her food properly, due to some kind of virus, leading to a surplus of insulin in her body. Who knows! All we can do is keep checking her blood, pricking her fingers and treating her accordingly, I haven't had much sleep the past few weeks but I don't even care if it means Ivy will experience a little less discomfort.
It will have been 2 weeks tomorrow since Ivy had that awful attack and last night, having studied her stats, we almost hoped that she was returning to normal but then at 3am Ivy woke desperate for a drink, she downed a full bottle of water, I checked her blood...her glucose levels were 18.7! Hyperglycaemia kicks in when blood glucose is above 12, a T1 adult friend likens it to that awful feeling we call a hangover; headaches, feeling sick, being tired, unquenchable thirst.
These are Ivy's blood glucose readings for today. .
18.3, 9.5, 16.5, 16.7, 17.5, 15.5, 18.3 and finally a 7.7 after giving her loads of extra insulin.
She's poorly. A temperature, loss of appetite, crying, bloodshot eyes, runny nose and after waking up at 8am she has been asleep for the past 2 hours, since 12! As if a virus isn't bad enough when you're a toddler, she has to deal with raised hyperglycaemia and feel like she's having the worse kind of hangover at the same time. Hopefully it won't last too long, we will keep her hydrated, keep checking for ketones and of course give her as many hugs as she wants and watch Disney films all day!
A friend of mine recently called Ivy "content" I look at her, and she really is! Despite everything that she has gone through and continues to go through every day, she is the happiest little soul, often in hysterics herself or causing our cheeks to hurt through laughing so much! To those who don't know her, you wouldn't even know what a courageous little girl she is. Our little Superstar. A superstar who recently raised £450 doing her vwey first sponsored walk for JDRF, the Juvenile Diabetes Research Foundation, she walked about 40% of the 5k herself; it took 90 minutes, 2 stumbles, 3 blood checks and some snacks along the way. She crossed the finish line to applause, high 5's and cheers. I could have burst with pride and I cried!
She is amazing!
I need to remember that Ivy has diabetes, it doesn't have her, with our help and support she will hopefully live a normal life, ideally it will be an extraordinary one full of adventure. Like it typically is at the moment, she doesn't know she has this life long, life threatening condition, she just wakes up every day wanting to go and feed the ducks, play with playdough or dance around the living room. Life is an adventure to her and after the last couple of weeks we have had, I couldn't be more thankful for her innocence.
Two weeks ago we experienced the darker side of diabetes, after several days of generally being very low and having had 25 hypoglycaemic attacks in 3 days, Ivy lost consciousness due to one. I had already treated a hypo at 1:20pm, she came up to the safe range and was back to bouncing around and playing, when I asked if she wanted to go to playgroup she leapt straight up and went to get our shoes, so off we went. In the community centre she was happily playing with sensory rice and wanted to do some painting, I popped on an apron, sat her on a tiny chair and after one splodge of yellow paint on the paper she screamed, arched her back and frantically started doing the makaton sign for food; something she does to alert us that she is going low. It wasn't even 2:00pm so I thought she couldn't possibly be hypo again but checked her anyway. Her blood glucose reading was 2.8, anything below 3.1 is classed as a serious hypo. I took her into a side room and thought I'd read her a story after giving her double her usual dose of glucojuice. She slumped on my lap and I called our Diabetes Team to get some more advise for treating these persistent attacks, whilst on the phone to the specialist nurse Ivy became really drowsy and I was urged by the nurse to call 999. Ivy's head flopped forward and when I tried to get her to respond to her name, her eyes rolled in her head and she couldn't focus on anything. Within a few minutes her head was back and she had lost consciousness, we couldn't wake her and she just lay there, to an outsider she looked like she was sleeping. The paramedic struggled to find the community centre and arrived 20 minutes after I had given her the glucojuice, he put Ivy on some oxygen and explained that she may need an injection of a hormone called Glucagon, but they're reluctant to use it on little ones unless they really have to. He checked her blood and she was now 3.8, still in the hypo range but 0.2 off the safe numbers. He explained that he would wait 5 more minutes to see if the glucojuice would still be working, another 5 minutes ticked slowly by but he finally checked again, Ivy's glucose levels had crashed to 2.6, I saw the smallest look of shock on his face before he resumed that calm exterior that medical professionals have, he simply said "she needs the glucagon now, pull her trousers down" he administered the hormone injection, which would cause Ivy's liver to expel all of it's glucose stores and kick start the body, it took Ivy about 10 seconds to come around and she was screaming, scrambling to get the oxygen mask off, I was so relieved she was awake, I didn't even think about what would happen next. An ambulance arrived to take us to a&e, as Ivy no longer had any glucose stores it was important to get her straight there, blue lights and sirens, because she had to eat something. I am sure it only took us 10 minutes to get there but it felt like an hour. By the time we got to the hospital, Ivy was back to her normal self, happily playing, at one point she had another hypo with absolutely no signs at all (diabetes is so bizarre in how it affects the body!). We had her pump switched off for 90 minutes, gave her 2 biscuits and her blood sugars remained normal and stable; a small part of my hopeful brain thought she was cured, sadly not, her pancreas doesn't work how it is supposed to and until there is a cure, that is just the way it is. For the following week Ivy had her insulin intake significantly reduced, her background insulin has been running at 20% of her normal amount during the day, this is the equivalent of her having 0.0005ml of insulin over a 24 hour period! You couldn't even put that tiny drop on your hand! Nobody really knows what has caused this sudden sensitivity to insulin, our consultant said that it isn't uncommon for smaller children to not need as much insulin sometimes. Diabetes requires such a delicate balance of so many factors, some of which are still unknown. Another theory is that she hasn't been absorbing her food properly, due to some kind of virus, leading to a surplus of insulin in her body. Who knows! All we can do is keep checking her blood, pricking her fingers and treating her accordingly, I haven't had much sleep the past few weeks but I don't even care if it means Ivy will experience a little less discomfort.
It will have been 2 weeks tomorrow since Ivy had that awful attack and last night, having studied her stats, we almost hoped that she was returning to normal but then at 3am Ivy woke desperate for a drink, she downed a full bottle of water, I checked her blood...her glucose levels were 18.7! Hyperglycaemia kicks in when blood glucose is above 12, a T1 adult friend likens it to that awful feeling we call a hangover; headaches, feeling sick, being tired, unquenchable thirst.
These are Ivy's blood glucose readings for today. .
18.3, 9.5, 16.5, 16.7, 17.5, 15.5, 18.3 and finally a 7.7 after giving her loads of extra insulin.
She's poorly. A temperature, loss of appetite, crying, bloodshot eyes, runny nose and after waking up at 8am she has been asleep for the past 2 hours, since 12! As if a virus isn't bad enough when you're a toddler, she has to deal with raised hyperglycaemia and feel like she's having the worse kind of hangover at the same time. Hopefully it won't last too long, we will keep her hydrated, keep checking for ketones and of course give her as many hugs as she wants and watch Disney films all day!
A friend of mine recently called Ivy "content" I look at her, and she really is! Despite everything that she has gone through and continues to go through every day, she is the happiest little soul, often in hysterics herself or causing our cheeks to hurt through laughing so much! To those who don't know her, you wouldn't even know what a courageous little girl she is. Our little Superstar. A superstar who recently raised £450 doing her vwey first sponsored walk for JDRF, the Juvenile Diabetes Research Foundation, she walked about 40% of the 5k herself; it took 90 minutes, 2 stumbles, 3 blood checks and some snacks along the way. She crossed the finish line to applause, high 5's and cheers. I could have burst with pride and I cried!
She is amazing!
Thursday, 3 July 2014
Steps forward..
It has been a big couple of weeks for Miss Ivy, she started walking! She has has tentatively been taking a little steps here and there for a few weeks but really started going for it in the last few days; she has also mastered standing up from sitting without having to hold onto anything, so she is always on her feet now. My T1 friend has advised I stock up on Rowntrees jelly pots to treat the inevitable hypo attacks now that she is mobile!
I feel so proud of Ivy; those intraosseous cannula attempts (when they drilled into her shin bone) haven't really held her back at all! She had been making steady progress before she was diagnosed and the consultant said it would be months before she could properly stand and support her weight again, never mind walk, and look at her now, tottering around laughing at this new found skill. It must be so fun to all of a sudden see the world from a whole new perspective and height..and what height, she is so tall!
Her first official steps were taken in the garden, 6 of them took her from a flower pot to myself, the weather has been gorgeous for the past week; so warm and sunny, I love being outside with her, she loves the fresh air, the wind on her face, it always seems to calm her down when she is hyperglycaemic and distressed. It's a shame we live in Manchester, officially one of the wettest places in the UK which (until she can wear her wellies!!) prevent us from going out sometimes.
A hugely massive step forward this week has been the pump! After running high for over a month, the consultant decided that we needed to try a new tactic to try and rein in her erratic numbers and the Accu chek Roche Combo was the chosen pump. We chose it mostly because it is a bluetooth set up, once Ivy has the cannula fitted, the pump will sit snug against her back and we won't have to touch it to deliver her insulin! She can carry on playing and not even notice that we have done anything, we just program her carbs:insulin ratios, type in the number of carbs she will be eating, confirm confirm confirm and deliver. Done. Just like that! The consultant has assured us that it will make things better for Ivy and inevitably for us too, but it will give us 10 more things to think about. In my opinion though, getting my brain to think about a few more things, in exchange for my little lady feeling better is a tiny price to pay!
The biggest news of this blog entry is that as I type, I am wearing this pump!! Just using saline rather than insulin may I add.. Our specialist nurse thought it would be a good idea for both Sam and I to wear the pump for a couple of weeks and get used to it and really get our heads around the technical side of things before Ivy goes live at the end of the month. In a few days we will introduce her to the pump, starting with the noise that is made when the cannula is fired; she will wear some without a needle. She will also get used to wearing the pump, carrying it around, neatly tucked away in her babygro.
I was so nervous about today, I was gripped with this fear that we were doing the wrong thing and that it wouldn't be the right route for Ivy but after spending time with the pump nurse and using this little lifesaving machine this evening, I can already see that we won't look back. My T1 friend said some people wear their heart on their sleeve and she wears her pancreas on her hip...Ivy's will be gently nestled above that peachy little bottom, without an injection in sight!
I feel so proud of Ivy; those intraosseous cannula attempts (when they drilled into her shin bone) haven't really held her back at all! She had been making steady progress before she was diagnosed and the consultant said it would be months before she could properly stand and support her weight again, never mind walk, and look at her now, tottering around laughing at this new found skill. It must be so fun to all of a sudden see the world from a whole new perspective and height..and what height, she is so tall!
Her first official steps were taken in the garden, 6 of them took her from a flower pot to myself, the weather has been gorgeous for the past week; so warm and sunny, I love being outside with her, she loves the fresh air, the wind on her face, it always seems to calm her down when she is hyperglycaemic and distressed. It's a shame we live in Manchester, officially one of the wettest places in the UK which (until she can wear her wellies!!) prevent us from going out sometimes.
A hugely massive step forward this week has been the pump! After running high for over a month, the consultant decided that we needed to try a new tactic to try and rein in her erratic numbers and the Accu chek Roche Combo was the chosen pump. We chose it mostly because it is a bluetooth set up, once Ivy has the cannula fitted, the pump will sit snug against her back and we won't have to touch it to deliver her insulin! She can carry on playing and not even notice that we have done anything, we just program her carbs:insulin ratios, type in the number of carbs she will be eating, confirm confirm confirm and deliver. Done. Just like that! The consultant has assured us that it will make things better for Ivy and inevitably for us too, but it will give us 10 more things to think about. In my opinion though, getting my brain to think about a few more things, in exchange for my little lady feeling better is a tiny price to pay!
The biggest news of this blog entry is that as I type, I am wearing this pump!! Just using saline rather than insulin may I add.. Our specialist nurse thought it would be a good idea for both Sam and I to wear the pump for a couple of weeks and get used to it and really get our heads around the technical side of things before Ivy goes live at the end of the month. In a few days we will introduce her to the pump, starting with the noise that is made when the cannula is fired; she will wear some without a needle. She will also get used to wearing the pump, carrying it around, neatly tucked away in her babygro.
I was so nervous about today, I was gripped with this fear that we were doing the wrong thing and that it wouldn't be the right route for Ivy but after spending time with the pump nurse and using this little lifesaving machine this evening, I can already see that we won't look back. My T1 friend said some people wear their heart on their sleeve and she wears her pancreas on her hip...Ivy's will be gently nestled above that peachy little bottom, without an injection in sight!
Me wearing the pump!
Wednesday, 11 June 2014
A way of life.
It is 2am, Ivy's glucose levels are slowly creeping up, I have been hoping that she won't wake because hyperglycaemia seems to really affect her when she wakes with it..I suppose that is because she goes to bed feeling fine and wakes up feeling awful. Sadly, that happened tonight, she woke up sobbing and she needed a correction injection. She is coming back down now and is sleepily watching Postman Pat, my poor girl, it is times like this when the 'why hers' hit me; she will never know what her life was like before she was diagnosed, she won't remember being able to charge around Anchors Away, soft play centre, for as long as she wanted to without me stopping her every half an hour to test her blood and make sure she eats something if she begins to drop too quickly. She won't remember messy play at home with lots of different foods that she can explore, squidge, squeeze and taste without me monitoring everything and having to interfere with her exploration and learning. She won't know that she used to eat what she liked, when she liked with spontaneity, without me checking her blood was ok and giving her insulin to balance the food. Everything seems so rigid at the moment, I find myself checking every wrapper and weighing so many things to try and find little things that she can eat without us having to interfere and take the fun out of it-we have spent a fortune on babybels, that little round circle definitely makes her smile!
There has been so much in the media the last few weeks stating that Diabetes is draining the NHS and only 20 minutes of exercise a day can cure it, blah blah. They mostly neglect to distinguish between Type 1 and Type 2 diabetes; T2 is mostly caused by lifestyle factors and can be reversed, life can return to how it was before diagnosis. T1 (at the moment) can't be cured. I recently complained to a national newspaper because it clearly stated that "T1 is caused by overexposure to cane sugar", I couldn't believe it!! The Editor of that newspaper replied and apologised for the mistake. Ivy didn't do anything to cause her pancreas to stop working and without us, managing her condition, she would die. Her glucose levels will soar when she consumes any carbohydrates and she will be insulin dependent for the rest of her life. Only insulin can help to bring these levels under control, a daily battle and delicate balancing act. It was nothing to do with cane sugar, any other foods or lifestyle factors. It has been almost 9 weeks since her diagnosis now, it hasn't become any easier but it has become normal and our way of life. It is unpredictable and we are still having to check every 2 hours through the night but I don't care. I miss things from our 'old life' but I don't miss anything for myself, I miss things for Ivy; she will never know her life to be any different, a blessing in disguise maybe? People always ask would you prefer to see the colours in the world and then lose your sight or never be able to see but not miss those colours? A hard choice to make, if you're lucky enough to choose.
Ivy is amazing, I can't praise her enough. I hope that this innocent acceptance of her condition sticks around for as long as possible, I dread the day she asks 'why me?'...I'll tell her that she was born so perfect that she had to be a diabetic child, she can cope with it because she is so amazing and strong, another little child might not be able to cope with it and they would become very poorly. I'll tell her to embrace it and to promote living with it and not let it hold her back. I'll tell her to chase her dreams and to shout it from the rooftops when she achieves them. I'll tell her to be proud of herself and to never be ashamed.
I'll remind her that little girls are made of sugar and spice and all things nice; she was just made a little sweeter than most.
There has been so much in the media the last few weeks stating that Diabetes is draining the NHS and only 20 minutes of exercise a day can cure it, blah blah. They mostly neglect to distinguish between Type 1 and Type 2 diabetes; T2 is mostly caused by lifestyle factors and can be reversed, life can return to how it was before diagnosis. T1 (at the moment) can't be cured. I recently complained to a national newspaper because it clearly stated that "T1 is caused by overexposure to cane sugar", I couldn't believe it!! The Editor of that newspaper replied and apologised for the mistake. Ivy didn't do anything to cause her pancreas to stop working and without us, managing her condition, she would die. Her glucose levels will soar when she consumes any carbohydrates and she will be insulin dependent for the rest of her life. Only insulin can help to bring these levels under control, a daily battle and delicate balancing act. It was nothing to do with cane sugar, any other foods or lifestyle factors. It has been almost 9 weeks since her diagnosis now, it hasn't become any easier but it has become normal and our way of life. It is unpredictable and we are still having to check every 2 hours through the night but I don't care. I miss things from our 'old life' but I don't miss anything for myself, I miss things for Ivy; she will never know her life to be any different, a blessing in disguise maybe? People always ask would you prefer to see the colours in the world and then lose your sight or never be able to see but not miss those colours? A hard choice to make, if you're lucky enough to choose.
Ivy is amazing, I can't praise her enough. I hope that this innocent acceptance of her condition sticks around for as long as possible, I dread the day she asks 'why me?'...I'll tell her that she was born so perfect that she had to be a diabetic child, she can cope with it because she is so amazing and strong, another little child might not be able to cope with it and they would become very poorly. I'll tell her to embrace it and to promote living with it and not let it hold her back. I'll tell her to chase her dreams and to shout it from the rooftops when she achieves them. I'll tell her to be proud of herself and to never be ashamed.
I'll remind her that little girls are made of sugar and spice and all things nice; she was just made a little sweeter than most.
Saturday, 7 June 2014
One.
I have been more than excited for Ivy's birthday, not only because it is a big birthday for a little girl but because it seemed so much more poignant after what she has been through. The run up to it was stressful, not only because I wanted too make sure it was perfect but also because slowly, but steadily, her glucose levels had been creeping up. She was experiencing prolonged hyperglycemic episodes for most of the day..These are a concern as they are what contribute to the long term issues type 1 diabetics face with, for example, their eyesight and kidney functioning. Our DSN (specialist nurse) advised that it was likely due to her teething; it was driving her crazy, constantly chewing her hand, drooling everywhere and crying. Despite this her birthday was fast approaching and we were excited, I haven't been as excited for my own birthday since I was 7 and I got a Polly Pocket watch, with solid perfume hidden under the face!
On her birthday, we took her downstairs to the living room, which was filled with balloons-these it seemed were far more exciting than her presents! She had a birthday breakfast of blueberry pancakes (carbs perfectly counted of course!) and the opened her presents, her largest being her brand new swing, complete with helium balloons in the garden! Her reaction to first using this was amazing; she laughed and kicked her little legs continuously! We went to Jo Jingles and then the 3 of us went for a birthday lunch to a restaurant called Bem Brasil, perfect for our little diabetic lady because we could measure and calculate her carbohydrates, she could then eat as much protein and vegetables as she liked! Our evening was spent at Grandma and Grandpa's house with a birthday tea! The entire day was just lovely, a perfect family celebration.
The following day was her party! All of her little friends had been invited to come along at 11am.
We booked Charlotte and Jo Jingles to come and do a little session, made up of her favourite songs, instruments and bubbles. Ivy wore an adorable little navy blue party dress, covered in little flowers, with a pink band around the waist. Her outfit was completed with a pair of luminous yellow pumps, right on trend of course. This girl has an amazing wardrobe! We wanted her to be able to eat the same as her friends, her party food buffet was perfectly baby friendly; fruit cups, carrot sticks, cheerios, jelly cups, baby crisps and perfect little sandwiches cut into tiny little people and flowers. Everything was carb counted and she could eat whatever she liked. We kept a note of it all and because of most of her food choices being low in carbs or carb free, she didn't need an injection of insulin.
Her cake was my favourite thing; I'd spent every evening, in the week before her birthday, making fondant figures of circus animals and a Jo Jingles ringmaster. Ivy's grandma had spent so long perfecting a baby and diabetic friendly cake, sweetened with blueberries. It was amazing! I felt so emotional when everybody sang happy birthday; Ivy just studied the room, completely bemused, not knowing why she was the centre of attention. Not knowing how special the day was, or how special she is. Needless to say, she crashed out afterwards, exhausted by the excitement of the afternoon. I'd like to say she slept for a few hours, but that's not her style...after about 45 minutes she was awake and charging around again!
That was 3 weeks ago now, so much can happen in such a short space of time. She is on the verge of walking now, tottering around barely holding our hand. This is incredible for us to see, her diagnosis was only 8 weeks ago and the on shift consultant had advised us that the intra osseous cannulas in her shin bone would most certainly affect her mobility. They did but not too the extent they thought they would; she had been close to walking before she was diagnosed, but she has soldiered on and the new realisation that being upright can get you places is amazing, she is on her feet all the time.
As far has her diabetes goes, we had a clinic appointment last week; I was dreading it, as hard as we'd tried to manage it, Ivy's blood glucose levels had been running high for 10 days, she had been suffering with extended hyperglycaemia. Our consultant and specialist nurse were so understanding and have decided that an insulin pump should be the next step in helping Ivy. We don't know a great deal about them yet but having one should help Ivy feel so much better. At the moment the smallest amount if insulin we can administer is 0.5u, about 300 micromils, half a drop! It is a tiny amount but she is still so sensitive that this minuscule drop can send her into a hypoglycaemic attack in no time at all. The pump will be able to administer amounts as small as 0.1u and we will be able to treat hyperglycaemia sooner.
I am writing this at 3am; Ivy has had a particularly stressful couple of hours, with her levels slowly creeping up. We hoped that her background, slow release insulin may bring her down as we've been advised not to correct her below 16mmols, unfortunately (or fortunately. .) next time we checked she was almost 18 but we could now give her half a unit. Until it kicked in she was still so anxious, distressed and uncomfortable, it breaks my heart to see. She didn't ask for this and she doesn't understand why she is hurting, it is times like this that I am reminded that she will have moments like this for life now, the only thing I can do for her, is try and manage it as best I can and reduce the discomfort she feels..this is easier said than done and when she is sobbing, holding her head and thrashing around, I feel like a pretty useless mummy. What is easy, is the cuddling, kissing and love I can give her to reassure her that she is not alone. My 1 year old, facing so much and who's body is going through so much more than it should be. She is a trooper. An almost walking, birthday cake scoffing trooper. I love her with all my heart.
Her cake was my favourite thing; I'd spent every evening, in the week before her birthday, making fondant figures of circus animals and a Jo Jingles ringmaster. Ivy's grandma had spent so long perfecting a baby and diabetic friendly cake, sweetened with blueberries. It was amazing! I felt so emotional when everybody sang happy birthday; Ivy just studied the room, completely bemused, not knowing why she was the centre of attention. Not knowing how special the day was, or how special she is. Needless to say, she crashed out afterwards, exhausted by the excitement of the afternoon. I'd like to say she slept for a few hours, but that's not her style...after about 45 minutes she was awake and charging around again!
That was 3 weeks ago now, so much can happen in such a short space of time. She is on the verge of walking now, tottering around barely holding our hand. This is incredible for us to see, her diagnosis was only 8 weeks ago and the on shift consultant had advised us that the intra osseous cannulas in her shin bone would most certainly affect her mobility. They did but not too the extent they thought they would; she had been close to walking before she was diagnosed, but she has soldiered on and the new realisation that being upright can get you places is amazing, she is on her feet all the time.
As far has her diabetes goes, we had a clinic appointment last week; I was dreading it, as hard as we'd tried to manage it, Ivy's blood glucose levels had been running high for 10 days, she had been suffering with extended hyperglycaemia. Our consultant and specialist nurse were so understanding and have decided that an insulin pump should be the next step in helping Ivy. We don't know a great deal about them yet but having one should help Ivy feel so much better. At the moment the smallest amount if insulin we can administer is 0.5u, about 300 micromils, half a drop! It is a tiny amount but she is still so sensitive that this minuscule drop can send her into a hypoglycaemic attack in no time at all. The pump will be able to administer amounts as small as 0.1u and we will be able to treat hyperglycaemia sooner.
I am writing this at 3am; Ivy has had a particularly stressful couple of hours, with her levels slowly creeping up. We hoped that her background, slow release insulin may bring her down as we've been advised not to correct her below 16mmols, unfortunately (or fortunately. .) next time we checked she was almost 18 but we could now give her half a unit. Until it kicked in she was still so anxious, distressed and uncomfortable, it breaks my heart to see. She didn't ask for this and she doesn't understand why she is hurting, it is times like this that I am reminded that she will have moments like this for life now, the only thing I can do for her, is try and manage it as best I can and reduce the discomfort she feels..this is easier said than done and when she is sobbing, holding her head and thrashing around, I feel like a pretty useless mummy. What is easy, is the cuddling, kissing and love I can give her to reassure her that she is not alone. My 1 year old, facing so much and who's body is going through so much more than it should be. She is a trooper. An almost walking, birthday cake scoffing trooper. I love her with all my heart.
Sunday, 11 May 2014
A little but massively, important thank you.
Once we had been home for a few days and we were settling back into life away from The Tree House we started to think about how we could thank the staff who had looked after Ivy so well. In recent years Stepping Hill has received some bad press but I can honestly say we have never had anything other than incredible care, especially through our slightly complicated pregnancy, Ivy's lovely water birth and now with her diabetes. Her specialist consultant and several of the nurses who we had spent time with are running the Manchester 10k, in May, for Mediequip 4 Kids and we thought it would be nice to support them.
We asked our nearest and dearest if they would like to support them too and make a small donation. Everybody replied immediately and said they would be delighted to donate. In 2 weeks we had raised £400! An amount I never even imagined we would be able to collect.
To go with the donation we also made them a very special thank you card to remind them of the key role they held in saving Ivy, helping her get better and going home. We used 8 photographs of Ivy, starting with one taken half an hour before we first took her to hospital, so poorly and thirsty, clinging her little water bottle, ending with one of her with a big smile, with her special nurse backpack full of her diabetics supplies, ready to go home. The photographs in between show the 'Ivy Revival'. A time line showing the progress she made, the first photo was in black and white, slowly they increased in colour, until the last was full colour and vibrant. Sam created the images and I played my part by cutting and sticking them together!
We took the card and donation to The Tree House after an appointment with one of our Diabetes Nurses, of course the nurses swooned around Ivy, all desperate for a cuddle. They didn't actually recognise me at first, proof that there really is no place like home for some R & R! When we gave them the card they cried and we cried, they were so surprised and grateful for the donation and the card was passed around every member of staff before being put pride of place on the front desk. Ivy had her photo taken with the team on shift and she will receive a letter of thanks for helping The Tree House, all of these will be little memoirs of her diagnosis journey, of The Ivy Revival.
Sunday, 4 May 2014
A whole new normal life of carb counting.
Home sweet home. It felt amazing to sleep in my own bed, like a cloud compared to the one in hospital! That first night went quite smoothly, Ivy's sugars were pretty stable and we slept like babies. It was the following day which shocked me, it was like having a new baby; as first time parents your routine goes to pot, you don't really think about yourself, you eat at the most obscure times and leaving the house is an absolute mission!
We used to eat our meals around the table but all of a sudden it took so long to create, weigh, cook and carb count Ivy's meals that we forgot to cook ourselves anything. Here is an example of how we have to carb count Ivy's food: If she wanted a bit of banana (surprisingly high in carbohydrate!) weighing 26g, we would have to find out the number of carbs per 100g of banana, make this a percentage and multiply it by 26g. Ivy can have 0.5 units of insulin per 15g of carbs, any less and she couldn't have any with being too sensitive but her blood sugars would still escalate, we found ourselves having to encourage her to eat much more than we used to, thank god she loves her food. I remember the first meal we gave her in the hospital, there were fishfingers and mixed vegetables; the fish was deep fried so we removed the bread coating, we wouldn't dream of feeding a 10 month old deep fried food but then a nurse pointed out that it meant Ivy didn't actually have any carbs!
It isn't just the carbs we have to consider, we have to think about how these are broken down and used by the body. When consumed with fat and protein, carbohydrates take longer to break down and make their way into her blood. Her insulin is given before her meal so that it is ready and waiting to break down any new sugars she has eaten, sometimes because they take so long to reach her blood the insulin can cause her glucose levels to drop and cause hypoglycaemia before being corrected. Other times we found some carbs broke down too quickly and she'd spike with hyperglycaemia (too high) before the insulin had time to tackle them. It is so unpredictable and frustrating!
Recently we have started to struggle keeping her steady through the night. Our two hourly checks show figures between 12 and 8 around midnight but by 3am she is hypo; up we all get, jelly out, rusks out, toys out...Ivy is not keen to go back to bed after a midnight snack!
The other end of the spectrum is when she is hyperglycaemic. This is when her sugars go too high, typically if they go over 15 we have to give her an injection of corrective insulin. Unfortunately, because she is so sensitive to insulin, we have to be careful when we give it to her. One night she woke up at midnight crying, we tested her blood glucose and it was 15.1, we called the hospital for some advice and as she had had a hypo earlier in the day they recommended not correcting it as it could floor her. Sadly that meant we had to ride it out and hope that her slow release insulin could bring it down. Checking every hour, we just had to wait. Poor Ivy was so upset and obviously hurting, she tried to get comfortable but she couldn't lie down or sit down, or be held or even sit still. She was a little fidget but a fidget who was obviously desperate to sleep, she kept asking for a breastfeed but because of the sugar content in the milk she wasn't allowed to. It is horrible saying no, she doesn't understand why it was refused and it was even harder because she didn't want it for the milk, she needed the comfort to help her feel better. Three tiring hours later, by 3am, her blood glucose levels had reduced enough to allow her to have a breastfeed. Whether it was the insulin or her getting worked up and crying, or a combination of both, we don't know but within in minutes she was fast asleep, not too long after so were we!
We had our first meal in public a few days ago, rushing around we realised it was Ivy's lunch time. We decided to go to M&S cafe because they do perfect little, crust free, cheese sandwiches with the carbs already counted for us! We could hardly be inconspicuous, the only free table was in the centre of the busy cafe and knowing we were going to have to give her an injection my heart started to race. I slowly got the pen ready and when Sam came over with the sandwiches, we stood up, I held Ivy and he injected her thigh. It was over in a minute and Ivy happily tucked into her lunch and I began to breathe again. Shortly after an older lady came to see Ivy and explained that she had noticed (who hadn't?) that we had given her an injection and she asked if Ivy was diabetic. She explained that her late husband had been too, she gave Ivy lots of attention and us lots of encouragement. Her kind words were almost healing for the internal fear I have, that I am going to let Ivy down and be utter rubbish at managing her diabetes.
It is 3 weeks today since we first went to the hospital, it feels like an absolute lifetime ago now though. Things are slowly starting to feel normal, although on Tuesday I face the whole new challenge of day time decisions without Sam, as he is going back to work. I am sure I know what to do but the reassurance I get from double checking with Sam that Ivy can have 10 extra blueberries, or she only needs half a unit of insulin, or even just to confirm she can have a breastfeed, makes me feel so much better!
What if I make a mistake? What if her blood glucose messes up and she floors or goes through the roof? What if she accidentally eats a chocolate bar she finds stashed somewhere?
I know, I'll ring Sam!
We used to eat our meals around the table but all of a sudden it took so long to create, weigh, cook and carb count Ivy's meals that we forgot to cook ourselves anything. Here is an example of how we have to carb count Ivy's food: If she wanted a bit of banana (surprisingly high in carbohydrate!) weighing 26g, we would have to find out the number of carbs per 100g of banana, make this a percentage and multiply it by 26g. Ivy can have 0.5 units of insulin per 15g of carbs, any less and she couldn't have any with being too sensitive but her blood sugars would still escalate, we found ourselves having to encourage her to eat much more than we used to, thank god she loves her food. I remember the first meal we gave her in the hospital, there were fishfingers and mixed vegetables; the fish was deep fried so we removed the bread coating, we wouldn't dream of feeding a 10 month old deep fried food but then a nurse pointed out that it meant Ivy didn't actually have any carbs!
It isn't just the carbs we have to consider, we have to think about how these are broken down and used by the body. When consumed with fat and protein, carbohydrates take longer to break down and make their way into her blood. Her insulin is given before her meal so that it is ready and waiting to break down any new sugars she has eaten, sometimes because they take so long to reach her blood the insulin can cause her glucose levels to drop and cause hypoglycaemia before being corrected. Other times we found some carbs broke down too quickly and she'd spike with hyperglycaemia (too high) before the insulin had time to tackle them. It is so unpredictable and frustrating!
Recently we have started to struggle keeping her steady through the night. Our two hourly checks show figures between 12 and 8 around midnight but by 3am she is hypo; up we all get, jelly out, rusks out, toys out...Ivy is not keen to go back to bed after a midnight snack!
The other end of the spectrum is when she is hyperglycaemic. This is when her sugars go too high, typically if they go over 15 we have to give her an injection of corrective insulin. Unfortunately, because she is so sensitive to insulin, we have to be careful when we give it to her. One night she woke up at midnight crying, we tested her blood glucose and it was 15.1, we called the hospital for some advice and as she had had a hypo earlier in the day they recommended not correcting it as it could floor her. Sadly that meant we had to ride it out and hope that her slow release insulin could bring it down. Checking every hour, we just had to wait. Poor Ivy was so upset and obviously hurting, she tried to get comfortable but she couldn't lie down or sit down, or be held or even sit still. She was a little fidget but a fidget who was obviously desperate to sleep, she kept asking for a breastfeed but because of the sugar content in the milk she wasn't allowed to. It is horrible saying no, she doesn't understand why it was refused and it was even harder because she didn't want it for the milk, she needed the comfort to help her feel better. Three tiring hours later, by 3am, her blood glucose levels had reduced enough to allow her to have a breastfeed. Whether it was the insulin or her getting worked up and crying, or a combination of both, we don't know but within in minutes she was fast asleep, not too long after so were we!
We had our first meal in public a few days ago, rushing around we realised it was Ivy's lunch time. We decided to go to M&S cafe because they do perfect little, crust free, cheese sandwiches with the carbs already counted for us! We could hardly be inconspicuous, the only free table was in the centre of the busy cafe and knowing we were going to have to give her an injection my heart started to race. I slowly got the pen ready and when Sam came over with the sandwiches, we stood up, I held Ivy and he injected her thigh. It was over in a minute and Ivy happily tucked into her lunch and I began to breathe again. Shortly after an older lady came to see Ivy and explained that she had noticed (who hadn't?) that we had given her an injection and she asked if Ivy was diabetic. She explained that her late husband had been too, she gave Ivy lots of attention and us lots of encouragement. Her kind words were almost healing for the internal fear I have, that I am going to let Ivy down and be utter rubbish at managing her diabetes.
It is 3 weeks today since we first went to the hospital, it feels like an absolute lifetime ago now though. Things are slowly starting to feel normal, although on Tuesday I face the whole new challenge of day time decisions without Sam, as he is going back to work. I am sure I know what to do but the reassurance I get from double checking with Sam that Ivy can have 10 extra blueberries, or she only needs half a unit of insulin, or even just to confirm she can have a breastfeed, makes me feel so much better!
What if I make a mistake? What if her blood glucose messes up and she floors or goes through the roof? What if she accidentally eats a chocolate bar she finds stashed somewhere?
I know, I'll ring Sam!
Subscribe to:
Comments (Atom)