Friday, 21 March 2014

Living with Type One (part two) experiences of living with a child with Type One Diabetes

So, last week we had to go down to Emilie's school for her parent/ teacher evening and to hear how she was doing. Well, I am pleased to announce that we got a glowing report!

Apparently Emilie is very well behaved, follows all the Golden Rules and is about where she is expected to be considering everything she has been through and the time missed from school due to her diabetes! We simply couldn't have asked for a better report!

Unfortunately the last month, Emilie has spent most of her time feeling crummy and ill. She was sick a couple of times and has also had a chesty cough that has been troubling her a bit. This has kind of made her blood sugar levels go up and down a bit as they are prone to do with illness. Yaay! Thanks Diabetes!!

Yesterday, we had an appointment at clinic. Once again, as we always seem to be doing on our last few visits, we had to try and explain away her few high readings and demonstrate what we were trying to do about them.

Although the nurses and the Doctors are all perfectly nice, you always seem to get the impression that you are doing something wrong, despite their reassurance. And they all so overly friendly, you kind of just want them to stop smiling at you and trying to comfort you that you are doing everything right. I mean, obviously you are not or otherwise Emilie's bloods would be better behaved, right?

It often feels with Emilie's Diabetes that we are not really managing it, just coping with it. Will there ever come a time when we can successfully manage it? I don't know. Right now there are times when it doesn't feel so. And if we are struggling, what happens when it becomes her responsibility? The only thing we can do, I guess, is be there to support her because this is something that will never go away and that she will have to live with for the rest of her life. What's more we, and later she, hold her life in our/ her hands. This isn't something simple or just black or white. Diabetes is complicated, it takes a lot of work and there are a lot of people out there who don't realise this or just how serious her condition is. Hell, until Emilie was diagnosed, neither did we...

When I left you last, I had just told you about Emilie being admitted to the Jenny Lind Children's Ward. That first weekend was and still is a bit of a blur. It was only the third time we had been there. The first time was when Emilie was born and didn't take to the breast as well as we thought. She was a pain to feed, lost a lot of weight and had to be readmitted ten days after being born. 

The second time was when Daddy pulled her arm out of its joint when she pulled away from me on the stairs. Apparently this is a very common accident at such a young age, but I was left feeling terribly guilty. Especially when I thought she was putting it on at first and made her sit down to eat her tea. Oops! Needless to say Mrs.Sparky was less than impressed.

As soon as Emilie was admitted with her Diabetes, the nurses and the Doctors started treatment. All I really remember really is having to stay overnight in a hospital room with her and being woken every couple of hours through the night when they checked her bloods again and again and again. A great way to spend my 40th birthday...not!

By the Sunday, they were happy with Emilie and ready to let her go, but first they had to make sure we were comfortable and happy with testing her blood and giving Emilie regular insulin injections. The Diabetic team don't work weekends except on call, so it was mostly down to the nurses to explain everything and send us on the way with the right supplies. As soon as possible, within the next two days, they told us, the Diabetic team for Norfolk would be out to fully go through everything but in the meantime, if we had any problems they gave us a number to call. I remember we must have phoned that number several times those first few days (and nights) but they didn't mind because that is what it was there for!

Emilie obviously was off from school and Mrs.Sparky took some time off to be with her while I went back to work. On the Tuesday, the Dietician came to our house. It was his job to help explain how to work out counting Carbs and to make sure both he and we were happy with the way things were going and progressing. The visit lasted, I think, a couple of hours and both me and Mrs.Sparky found ourselves becoming emotional during it. It was a lot to cope with and the last few days had been a lot to deal with and something just had to break. 

From that first week on, Emilie was put on a Insulin regimen called basal-bolus; this is what she is still on now. Essentially this means that for EVERYTHING she eats, Emilie has to count the carbs. And I mean everything. 

And that is the first common error that people often make when hearing someone has Type One Diabetes. Being Type One Diabetic has nothing to do with not being able to eat sugar. It is about controlling what you eat and making sure you take the appropriate steps so that your body does what it is supposed to with the food you are putting in. Emilie can still eat cake. She can still eat sweets. She just has to make sure she takes enough Insulin to combat the amount of carbohydrate present in the food that her body now is unable to break down independently.

Emilie has FOUR injections a day. One injection of Nova Rapid Insulin with every meal - breakfast, lunch and dinner- and one injection of Levemir every evening before bed to keep her stable during the night. If she wants to eat anything else during the day, (which we actively discourage right now, if she wants sweets, chocolate, cake etc she has it with her meal) then she NEEDS another injection. Simple as that. There are no two ways around it. These are the Rules now. Emilie's own personal Golden Rules as it were.

Thankfully, Emilie has been strong through all this. We couldn't ask for more. She has coped with everything life has thrown at her perfectly. Hopefully this will bear her in good stead in the future. From now on, Emilie just has to be a bit more responsible than everyone else with her eating habits is all.

One of the things that has proved invaluable to us through all this is a book the Diabetes Dietician gave us. It is a comprehensive guide to lots of different foods and drink you might encounter when eating out with a Carb count for different weights and portion sizes. This book is called Carbs and Cals and essentially gives you a visual guide to portion sizes so if you eat out, you can take a look in the book and go 'well, that looks like that much' and work out how many Carbs are within.You can get this free on the NHS if you are Type One Diabetic and there is also a Smart Phone App you can download, though this costs around £4.

It is a very interesting book - even if you are not Diabetic. For example, a 225g portion of Lasagne contains 29 Carbs, but a pint of cola 62 Carbs. Eating sweets or chocolate likewise can contain enough Carbs to be the equivalent of a full meal! 

It is very scary but, without this book, it is fair to say I think that there are times when both me and Mrs.Sparky would be lost! It's like every little thing that Emilie eats now has to be carefully considered and thought about! Thankfully Emilie doesn't do fizzy drinks and has never overly bothered us for chocolate or sweets but I hate to think what some parents must have to go through!

Whilst it's true that all of this has been hard, we have been truly blessed with Emilie and the way she has coped has made all of this a little easier. Still, this is an ongoing battle and one none of us will ever be able to have a respite from. 

That is part of why I wanted to Blog about this. I want other parents in the same situation to know YOU ARE NOT ALONE. There are other people going through the same things that you are and if by sharing our story I can help give some support, then this is what I want to do.

I am including the following links again to other sites that may be able to offer you more information and support:

And please share this Blog with anybody you know who has a child with Diabetes.

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