A marvellous man.

I can't believe we are now in March of 2015, where does the time go? I haven't posted for an age!
Samuel had his quarterly checkup, we had to cancel the one before Christmas as it clashed with a school trip to the science museum, lets face it that is far more exciting to a 10 year old. We hadn't been since September, and during that time we had had the winter sickness bug, the school holidays, awful bg levels, and of course Christmas itself.
We get to clinic and we are both excited by this as we were meeting up with Samuels pump buddy, the gorgeous Kita and her equally gorgeous mum Magda. We hadn't managed to link up our appointments for ages. Samuels height and weight had both gone up, height by 3cms and he had put on 4lb. Ahhhhh it all becomes clear.. .that is why we have had awful levels. Samuel is called in to see his consultant. This man is a hero among families of children with diabetes. Prof Peter Hindmarsh, otherwise affectionately known as 'The Prof' . He takes one look at his pump and states all Samuels settings are out of date and need changing. Carb to insulin ratio adjusted, Basel rates adjusted, correction dose adjusted. We had a quick chat about the residential trip that is coming up and we were on our way. Oh, side point for those in the know the HbA1c came down!!!
I can honestly say in the four weeks since this appointment Samuels levels have been amazing they have never been so good The Prof is truly an amazing man. The other reason I love this man is that the appointments are all about Samuel, he takes the time to talk to Samuel. I get the boring letters through the post stating all the medical stuff, Samuel gets a letter thanking him for going to clinic and that he hopes he enjoyed the rest of the day, it is all very personal.
Ask anyone who has there child seen at UCLH by this man, or actually anyone who has a child with type 1 diabetes, about him and they will all say the same.

How God selects......

Not my words but I love this poem  HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES by Erma Bombeck Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. “Armstrong, Beth, son. Patron Saint Matthew.” “Forrest, Marjorie, daughter. Patron Saint Cecilia.” “Rutledge, Carrie, twins. Patron Saint Gerard. He’s used to profanity.” Finally, He passes a name to an angel and smiles, “Give her a child with diabetes.” The angel is curious. “Why this one, God? She’s so happy.” “Exactly”, smiles God. “Could I give a child with diabetes to a mother who does not know laughter? That would be cruel.” “But has she the patience?” asks the angel. “I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that’s not going to be easy.” “But Lord, I don’t think she even believes in you.” God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.” The angel gasps. “Selfishness? Is that a virtue?” God nods. “If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect.” “She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.” “And what about her patron saint?” asks the angel, his pen poised in mid air. God smiles. “A mirror will suffice.” ~By Erma Bombeck

Children In Need.

Pretty much everyone will be aware that Children In Need is on Friday. This annual event is broadcast across the country with many celebrities taking part.
Friday 14th November is also World Diabetes Day, a very important date in the calendars of families who are affected by type 1 diabetes. This is the birthday of Dr Frederick Banting....who is that? This is the great man who discovered insulin. It's important to point out that insulin is NOT a cure for type 1 diabetes, it's life support. Without it a person with type 1 diabetes will die! FACT.
The whole month of November is diabetes awareness month, how many of you knew? We know that October is breast cancer awareness month, and November is taken over by 'movember' to raise awareness for prostate cancer, but diabetes awareness?
I suppose really the point of this post is that our type 1 children are 'Children in Need' they live with this life threatening condition day in, day out. Currently there is no cure, hopefully one day this will change.

Hope is in a Cure x

5 years in......

Diaversary.......diagnosis day........d day, whatever you call it....we call it diabetic birthday, today is that day.
5 years ago today diabetes entered our lives again, Samuel was 4. If you follow my blog you will know this already but for those who are new to it I will give a quick recap. My husband was diagnosed at the age of 22, so thankfully when Samuel started showing signs we knew what we were dealing with. That said it was still a huge shock to us, and it was still a lot to take in. He was never admitted into hospital and he never got the chance to get really sick, for that I will always be thankful as many are not so lucky.
So here we are.... Lots has changed, we move from twice daily injections, to multiple daily injections and now the pump. Have things got easier? The short answer is no, nothing is ever easy where type 1 diabetes is concerned. What does happen though is it becomes normal, well normal to us anyway, we are used to carb counting, insulin measuring and blood glucose testing. We have gained great support from the CWD online community, we have met some wonderful people and I'm sure this will carry on for many years to come.
However, this year is tinged with sadness, this year we have tipped over and Samuel has been diabetic longer than he hasn't. He has spent more than half his life injecting insulin, more than half his life counting carbs and measuring bg levels, and if I'm honest it sucks. But this is the hand we have been dealt, Samuel is an awesome young man, he is shining at school and he doesn't let his condition stop him from doing anything so actually I think we are really quite lucky, as it really could be a whole lot worse.

Missing........Samuels hypo awareness!

It appears that Samuel has misplaced his hypo awareness, actually his hyper awareness seems to be lost as well. Saying that he never really has had much hyper awareness. I just know when he is high as he is more irritating than his usual 9 year old boy self. You know what it's like.....he won't listen, do as his told, jumping around more than usual, the attention span of a goldfish, and generally I have the strong urge to shake him! That or push him through a wall, but I'm not allowed to do that ;-)
He did however recognise the fact that he was going low. He couldn't really describe it he would 'just feel low'.
The other week though we were sitting down to dinner and I had asked him to test.....1.5!! This is the lowest bg we have had since diagnosis. Up until he saw the number he was fine, he was playing with his sisters, once he saw the machine this changed and he got all emotional. It shocked me because it seemed to come out of nowhere. He hadn't been to his usual Friday night swimming lesson, he hadn't been charging around the garden. The pump was functioning correctly, it was all very odd, and the fact that it dropped so low without him knowing concerns and scares me. If he doesn't realise he is hypo and he isn't wearing a sensor then we are leaving it up to someone else noticing that maybe he doesn't look quite right! This is a huge ask of someone.
Thankfully at school we have a few people who do notice if there is something not quite right. One of them has been with Samuel since the start and can read him really the well, she knows when he is low. The others can usually tell when he is high as he is more 'jumpy' and can't sit still.
There are not enough words to describe how grateful I am to these ladies, they do an amazing job keeping Samuel safe in school, and I have never had to be concerned about his health when he is there.
But...... If anyone does come across his hypo awareness could you please send it back this way, with it missing the whole diabetes thing is so much more complicated!!

I'm thinking ignorance is bliss!!!

Ignorance is bliss?
Now this is not something that you would usually hear me say. I truly believe that knowledge is power, and armed with it anything is possible. However, Samuel and I went sensor training on Friday, and as his care is with UCLH he is funded for 10 sensors a year. As he has been pumping for almost a year now I thought it was time for us to try them, also his levels have been all over the place recently, I think we may have a bit if a growth spurt going on, although we are also in the school holidays which is ALWAYS a bit of a nightmare.
We came away with Samuel looking more like the bionic man, with the pump attached on one side and the sensor on the other, and the thing hasn't stopped alarming since. The thing with testing only five or six times is that you only get a snapshot of what is going one, the levels could be within range at these times and that makes us believe that the control is good, and we feel great! We are winning, we are in control not the diabetes, and that's where sometimes we are completely wrong!
The last two days have been a complete nightmare and a real eye opener! I thought we were plodding along quite nicely and things weren't too bad, how wrong was I! We have had high levels most of the time, yesterday he did not get below 10 until about 8pm, and then started rising again most of the night. Today has not been much better, it started good, but this afternoon has been constantly rising and now it it has dropped like a stone!

The sensor  is a fantastic bit of technology but after two days of rather annoying numbers part of me thinks I'd rather not know!!

Lets spread the word........

Today marks the end of diabetes awareness week, this year I haven't made a fuss and I haven't written about it. I don't really know why I've let it pass unnoticed, I've maybe pushed it to the back of mind, I don't actively think about it 24/7. Don't get me wrong there really is no getting away from it, not with two of them in the house with it, but it's now just the norm for us.

I accept, that I appear to be fairly laid back about Samuels diabetes, but I'm like that generally, and I always have been. Obviously everyone deals with life events differently, and what is right for one isn't always right for another. However, I do find myself getting rather agitated, and here's why. I don't understand why some people perceive others as ignorant if they question something to do with type 1 diabetes, or they believe something to be true when it isn't. Clearly the media have a huge part to play in what people believe to be true as they very rarely distinguish between the different types, and yes this does annoy me......a lot!! That said, unless something actually affects you why would you know? There are thousands of children's conditions / diseases out there, what makes 'our' one so special.
As a parent of a type 1 diabetic child we can think that we have it tough, and I totally agree its not easy, but lets take the time to be thankful for the children that we have. Lets also take the time to learn about other conditions, and have the understanding for others that we are desperately seeking for ours. Lets use the platform that we have, and use the audience that we have on our campaign to make people awareness of not just our fight, but the fight that parents of children with other conditions have.

Here's mine:
I have a good friend who I've known for about 8 years, her name is Maria. Our children went to nursery together, and then moved to to primary school together. She is, without doubt the bravest woman that I know, and feel blessed, and I feel proud that she is my friend.
6 years ago her son, (her only child) was diagnosed with DMD (Duchenne Muscular Dystrophy). For these of you that don't know this is an inherited (genetic) condition which affects the muscles, causing muscle weakness.
About 1 in 3500 boys in the UK are born with DMD, and the average life expectancy currently is 27 years old.
27 years old, that is no age at all!! As time goes on, and each year passes, it gets harder, it's not going to get better.
If you were to meet her, you would see the most cheerful, and smily person. She is positive most of the time, lets face it none of us can be positive ALL of the time.
She, like me does her bit to raise awareness, although she does mad things like swims with sharks, and throughs herself out of planes........ seriously she's crazy!! (I will stick to my running!)
So, my followers, and those of you that read this blog take the time to read up about this condition, and help my friend spread the word about DMD.

You can find out more at

http://www.nhs.uk/Conditions/Muscular-dystrophy/Pages/Symptoms.aspx

http://www.patient.co.uk/health/duchenne-muscular-dystrophy