Changing the rules...

Let me start by saying that three weeks in and we are loving the pump. As we had hoped we have better control, less fluctuating levels and a happier Samuel, which is all great. What's taking me slightly longer is the ability to forget almost everything that we have been doing for the last three years. Obviously the 'diabetes' is the same. It's still unwelcome, annoying and doesn't follow the rules. Any parent of a type 1 child would agree. What has changed is the rules in which we follow when attempting to whip it into shape!!
The main rule change for us is the for the treatment of hypos. When Samuel was on mdi, we would treat a hypo (bg below 4) with fresh orange juice, wait 10 mins, re-test and if above 4 we would give two biscuits. Actually, the three girls would quite like it when he was low as they would also get two biscuits.
However, it is slightly different on the pump. 4 is still the floor and needs to be treated but we now follow the 15 rule: Treat with 15g of fast acting carbs, wait 15mins, re-test and if above 4 that's it, not further treatment is required. This has not gone down too well with the Warrington children!!
I also have to remind myself that if the levels before bed are between 4-5 that actually its ok, whereas on mdi, that would be too low and he would need a snack.
I wouldn't change it for the world now though, it just takes a little bit of time to trust the pump, but I am getting there.

Pumping Insulin....

Samuel has been pumping insulin for a few weeks now, he went 'live' on Tuesday 7th  August 2012. We started this journey with another family, Magda, Ben and 7 year old Kita. Samuel and Kita became firm friends straight away, which was lovely to see as Samuel doesn't really know anyone his own age with type 1 diabetes, and I feel very lucky to have met Magda, it feels like I have always known her and it is lovely to have someone who is going through the same process at the same time. I have lots of support from the diabetes on line community, but it isn't the same.
Pump school had arrived very quickly for us as we were given a cancellation appointment, so although I had some idea of what it entailed I didn't really have a chance to get myself worked up about it. Olivia had made a countdown chart so that Samuel could cross off his remaining injections, and week were all, as a family excited. It would mean a better quality of life for Samuel, better control and more freedom.
The night before I have to say I had got myself in a bit of a state, even though I had been fighting for this for a long time I was overcome with nerves! What if I did something wrong? Did I push Samuel into it? Was it really the best thing to do?
I really shouldn't have worried, everything went really well!
Samuel loves his pump!! On our way home from the hospital we let him have a bar of chocolate, and he looked at us and said 'it's been so long since I have had one of these (mint aero) I can't remember what it tastes like' he enjoyed every mouthful!
He is a completely different child, he doesn't have the mood swings that he used to have as we don't have the huge blood glucose swings. His levels are much more settled, in the first two weeks I think he has only 4 readings over 14, which for him is amazing!

Was the fight worth it? Absolutely!
Was the two hourly testing worth it? Yes! (although I won't lie it was a killer!)

The team at UCLH have been amazing, the support for the first two weeks (daily phone calls) was fantastic, they have given me my son back.

My only regret is that I didn't do it sooner!

Pumping saline!!

Now, I realise that I have been really slack these last few months with my blog, sorry, however I have some truly fantastic news.
I have wanted Samuel to have an insulin pump for the last year or so, he hadn't shared my want! We had been plodding along for three years, and I knew it was time for a change. Our local hospital do not provide a pump service so in order for us to get a pump I had to change Samuels care. This worried me to begin with. The DSNs had been fantastic since Samuels diagnosis and I almost felt if I was betraying them by going elsewhere, but I knew that if I wanted a pump for Samuel that I would have to do it. As luck would have it I work at the hospital that some say is one of the best in the country as far a treating children with diabetes, and the Prof is the best in his field. So I requested that we be referred.

It then went completely crazy and I was totally overwhelmed!

I had a phone call to say that we had an appointment on the 16th July '12 to meet the nurses. I had discussed this with Samuel and he was keen to go, although he had not confirmed that he was indeed going to have a pump. We went to the appointment and after sitting the the nurse, and playing with the play therapist Samuel gave us a double thumbs up!! We were then given an appointment to come back for Samuel to try a pump, to see what he felt about it being attached, if he could sleep with it etc. I was expecting the appointment to be after a couple of weeks, but no we went back on the 18th July '12. At that appointment we were told that there was a place for us at pump school on the 31st July '12 if we wanted it. This meant that Samuel would be pumping insulin on the 7th August '12!!
I was completely overwhelmed! I couldn't believe it was happening so quickly....
So, tonight as I write this,  Samuel is pumping saline! So far, so good!

We can't wait until next week!

Diabetes fail!!!!

This episode occurred a couple of weeks back. Saturday mornings in our house are always quite chaotic. I had always said that the children would not take part in activities that occurred at the weekend, however things haven't quite turned out like that and now my eldest daughter has a tutor on a Saturday morning. So, we had a busy day planned, the fire station were having an open day and I was taking the children with my friend and her two girls. I had got them all up, Samuel had checked his blood and his level was on the low side, not hypo, but I decided that I would give him his injection after he had eaten his breakfast instead of before. They finished breakfast, I took daughter to tutor, came back, loaded the dishwasher, put some washing on. It was then time to collect from tutor, so I did, came back and got everyone ready to go to the fire station. I had decided to buy them Mc Donald's for lunch, so off we went. Now, the more observant among you have probably already noticed my error.... We sat down to eat, Samuel tested his blood 26!!!!!!! Yep!! I had forgotten to give Samuel his insulin with his breakfast!!! DIABETES FAIL!!!!

A quick round up....

I have been rather slack in the ole blogging department lately. So here is a round up of what has been going on in our diabetic world. My friend and I held a charity curry night for JDRF (Samuel) and The Muscular Dystrophy Campaign (her son Oliver). We raised just short of £1900, which was an amazing amount of money and everyone enjoyed themselves (I think!!). Three days after the four children, my mum and I flew to Ireland. We went with JDRF to talk about the D GAP trial. Those of you that follow my blog regularly will know that my three girls are part of this trial. I was meant to take part in two talks. However, I couldn't go to the first one as Samuel was residing in hypo city!! I did talk on the second day though, and for these of you that know me in real life will know that I don't like public speaking. That said, I managed to talk to over 60 people, and I actually felt ok about it. Although, two adults, four children travelling on a plane was not easy!! What came next? The Brighton marathon. Again, raising money for JDRF, I was absolutely thrilled with my efforts in the marathon this year. I managed to run it in 5hrs 22mins!! After the disappointment last year of hurting my knee at mile nine to say I was happy with this result is an understatement! So, I already have my place in Brighton for next year, and I have entered the ballot for the London marathon. So my challenge next year is if I get my London place I will run both marathons in one week. If I don't get a London place then I will aim to complete Brighton in under 5 hours. That's it, I will make more of an effort from now on!

Samuels 3rd diabetic birthday.

This occurred the day after our clinic appointment this year. It went by without any drama, he went to school and I was given strict instructions to buy sweets and take them into school for his friends. He is like the Queen and has two birthdays each year!! Basically anything goes on this day and he chooses what we have for dinner, which with Samuel usually involves the words 'take-away'. If you were to ask any parent of a diabetic child about this day you would probably get a mixed response. Some find it a really upsetting and traumatic, and others are more laid back about it. However, we all will use the day as a day of reflection. Three years.......it seems to have gone so fast, and although I remember his diagnosis as if it was yesterday it is hard to remember what life was like before. Everything is different now and we have learnt so much. I have a great network of friends, who, even though I have never met I know I can turn to for help, who understand, as they are in the same position. That said I also feel that I have so much more to learn and that we are only at the very beginning of this long journey. As yet, Samuel has never been ill, so I have not had that to deal with. He is not old enough to rebel as such, I can't wait for that stage, and at the moment I am in control. I know that as time goes on I will have to hand some of that control over, maybe on his 10th diabetic birthday. What I know for sure is diabetes keeps us on our toes, but another year can be crossed off, another one under our belts. One, where we can hold our heads up and say that it will not get the better of us, we are stronger, and every year that goes by, the stronger we get, because knowledge is power, and we are learning every day.

Left clinic feeling a little disappointed

Well, March has been busy in the Warrington household with regards to diabetes. So what follows will be a series of shorter blogs because each event deserves a title of its own.

Let's start with clinic *sigh* I have to admit I came away from this particular appointment feeling a little disappointed. Despite the night testing, the correction doses and really trying hard to get ontop of Samuels random levels his HbA1c went up! Not by much, 8.4 from 8.0, but still it is going in the wrong direction.
Yes, I know it is only a number, and yes, I know it is not a big leap, but any parent with a diabetic child will tell you that this number is a big deal, well it is to us! This number is what we feel we are being judged by. Who won this quarter? Did diabetes win or did we? Diabetes did! Has all the hard work, the carb counting, correction doses paid off? NO! Do I feel like I have failed? YES!!
I should point out that absolutely no one in clinic makes me feel this way, this is my own personal battle, mummy vs diabetes!!

We came away with only one change and that is moving Samuels lantus back from morning to evening, which is causing me no end of trouble, I keep forgetting!!

The other outcome from clinic is that they are no nearer to providing pumps, well I say no nearer I think that they have made some progress, and apparently Samuel is top of the list to have one, so we will just wait a little longer.