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.

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.