The most amazing clinic appointment....

Today both Victoria and Samuel had their diabetes clinic appointments at UCLH with The Prof. This was Victoria’s first appointment so I was slightly nervous for her.

Before I talk about the appointment I want to go back to 13 weeks ago when she was first diagnosed. I’d decided that because I was quite laid back with Samuels care, got slightly complacent with it that the ‘diabetes gods’ were teaching me a lesson by imposing this condition on another one of my children. Sort of ‘this will make her sit up and notice us’ type of thing. Which I know is completely ridiculous!!
Anyway, once Victoria’s care was taken over by the UCLH team and she was given her pump I came away with brand new updated guidelines which I decided to implement on Samuel as well as Victoria. I was met with some resistance from Samuel who said ‘everything was working completely fine before, I don’t know why you’ve had to change everything!’ He was being quite dramatic as this is what I changed...
We bolus 15 mins before eating, which gives the insulin a head start on the food.
Every dinner (not just pizza and pasta) we now put on a dual wave. Although we have since started to that for lunch as well.
Now that I’ve finally got Carelink to work I upload their data each week and spend time looking at trends.
I feel much more confident tweaking the pump if I need to.
I regularly night test again (I’d got lazy)
For the last couple of weeks Samuel has had in a sensor. (Victoria only got hers Friday)

So....clinic today and the dreaded HbA1c result, is parents always feel like we are being judged on this number. Since Samuel was diagnosed 9 years ago we have never seen a number below 8.2, even being under the care of The Prof...
Today Samuels was 7.6!!!!! Victoria 7.2!!!!!!
I couldn’t believe it, and the boy had grown another 2.5cm since the last appointment!

The hard work is paying off!

There was also talk of applying for sensors full time so we shall see how that goes and I find it so much easier when he has one.

Samuels 9th Diabetic Birthday

Dear diabetes,

9 years ago on the 15th March we officially met, you were a bit underhand though, you were around for a while without me noticing. That’s ok though, because I noticed you fairly quickly, you didn’t get a chance to get a firm hold on him and make him really poorly, or worse! He wasn’t yours to take! He was, and still is mine.

You arrived with baggage... low blood sugars, high blood sugars, ketones, blood testing, injections, insulin pumps and set changes. Let’s just take a moment to mention food... how many carbs? Are they slow release or fast? How much is on the plate? What if he decides not to eat it all? Don’t even get me started on pizza and pasta that requires a dual wave.

Then comes exercise, can he do it? Are his blood sugars too high? Too low? Does he need a snack first? What about after? It doesn’t stop.

Simple day to day life issues seem to really upset you. Growth spurts, hormones, too hot, too cold, exams, stress, anxiety, he can’t even go to sleep without me worrying that he won’t wake up, and don’t even talk to me about illness! That’s when you really don’t play fair!!

If all of that wasn’t enough what you then decided to do earlier this year was to inflict yourself into another one of my children! Samuel took this to heart but is extremely supportive of his sister.

So on the 15th March we celebrated his ‘diabetic birthday’ in 9 years we haven’t had a hospital admission. Samuel is excelling in school and does not let his diabetes get in the way. We celebrate that so far we are celebrating puberty and the chaos that it brings.

I am thankful for the online friendships that I have formed, passionate parents that fight for their children battling a condition that follows no rules. Let’s just keep going, and remember that ‘hope is in a cure’ x

- Emma