Saturday 27 January 2018

2 weeks in.....All about me.

Those of you who regularly read my blog will know that it's always been about Samuel, and now Victoria, or about Type 1 diabetes in general. This one is going to be different, this one is going to be about me, otherwise known as mum......or Emma, it depends who you are.
However, before we get to that bit let me update you on the progress of Victoria. On  Friday 19th January Victoria's care was taken over by the team at UCLH which is fantastic! I didn't think it would happen so fast. We had our first appointment with them on Wednesday 24th, and we are going again on Tuesday 30th for her pump! I could not be happier about this.

Ok, I don't usually write about me, in fact  I think I have only done it once since I started this blog in 2010.
If you don't know me in real life there are some things that you need to know.
  • I don't really 'do' emotion. By that I mean I don't cry at films, or books, or TV programmes. I don't cry at Children in Need or Comic Relief etc.
  • My mantra is generally 'it is what it is, and it's ok' 
  • Mostly, if something is out of my control, and I can't change it, then I tend not to worry about it. Please note that I said 'mostly'
  • I was on anti depressants for 7 years. I stopped taking them in February last year (2017)
These last two weeks in one way have gone so fast, but in another it seems like a life time. The first week I was a mum on a mission. I wanted her transferred out of the care of our local hospital to UCLH as soon as humanly possible, although we had to go through the motions of dealing with the local team. Once that had happened the second week involved me re visiting maths. UCLH gave us a carb ratio to work with, so I had to get back to working out insulin doses, something that I haven't had to do since Samuel started on his pump as it does it for you.
The appointment at UCLH reignited some emotion from me. There is a consultant nurse there who is amazing, and lovely and has the ability to reduce me to tears just by looking at me. Her name is Becky, we had lots of dealings with her when Samuel first went on his pump, and she was the first person that I saw at our appointment. All she has to do is ask me if I'm ok and that's enough to set me off, although I did manage to hold it together, this time. I don't know what will happen next week!
Monday I went back to work, I was off for the first week, and all it took was one of the teachers, who taught Victoria and Samuel, Geraldine, to ask me how I was... yep you've guessed, I was crying on her shoulder. Then Friday, one of the school mums saw me in the car, crying again! Then had to listen to me go on, sorry Julie.

Like I said I'm usually 'its ok', but in all honesty, it's NOT ok. Nothing about this situation is ok, and it won't be.
It's not ok that this has happened again, it wasn't ok the first time. It's not ok that every night that I go to bed I have the worry that one of them won't wake up. It's not ok that children are dying because of this condition. It's not ok.

If you see me, I will probably smile and say that I'm fine, what you won't see so much, is when I'm on my own, driving the car, or running, the smile may be gone, and the tears may be flowing.



Wednesday 17 January 2018

I'm one big contradiction.....

Today is Wednesday, so we are five days in with Victoria's' diagnosis, and things are feel slightly weird in the Warrington house. At the moment Victoria is doing really well, she seems confident in what she is doing, and plodding on with it, the only thing she is complaining about is that she is constantly hungry. The other three children I'm not so sure about. Samuel has gone very quiet, in previous blog posts I've spoken about how much of a worrier he is and this seems to be the case now. I asked him this morning "what are you thinking?"... he is not happy about her diagnosis and feels sad. Elizabeth is really upset and is worrying that she will be next, and Olivia, I have no idea, I can't reach her right now, she is being a moody 16 year old.
Me? I'm just one big contradiction! I'm impatient and annoyed right now, the team at Southend say to me that they know I have experience with type 1 and in the next breath talk to me like I'm stupid. Then tell me that don't want to sound patronising, as they are doing that exact same thing. The wheels are in motion for the transfer to UCLH, I phoned them first thing on Monday morning, the referral letter from the GP has been written and she has already been discussed in a meeting with The Prof. So its hard to go through the motions knowing that we aren't staying. The other thing is that one part of me thinks 'what's one more child with it when I already have one, and a husband', then the other side of me, when I sit and think about it by myself isn't 'why us?', because why not? but really?! Did I really need more stress in my life? Then I start overthinking.... Samuel was only 4 when he was diagnosed so doesn't remember not having diabetes, but Victoria is 11. I know that eating disorders happen with boys, but its never been a concern of mine with Samuel. Victoria has already noticed that her stomach is slightly flatter as she had lost a few lbs and has already mentioned that it might come back as she is eating more.

Anyway, that's where we are all at right now...

Sunday 14 January 2018

Now I have two!!!!!

I haven't written a post for a while and in all honesty was going to write one about Samuels growth spurt which made all of his levels go up....AGAIN! Puberty.... you have to love it.

However, that's all changed, yesterday Samuels 11 year old sister Victoria was diagnosed with type 1 diabetes. In the back of mind I have always wondered if another one out of the four would ever be diagnosed. When the girls did the D-GAP trial it was Olivia that tested positive for the antibodies so I always expected it to be her, so the fact that it was Victoria, who tested negative was a bit of a surprise.
We had been to parkrun, Samuel and Victoria were marshals, we went to get a drink after and she knocked back her whole bottle and declared that she was so thirsty! cue alarm bells. I suggested that once we got home that I would test her sugar level. The meter gave us the HI message! Thinking that it may be an error I got her to wash her hands again and we tested twice more with the same response.. the blood machines are so friendly! Out came the ketone machine and we were met with a 5.5...not great.

So, here we are sitting in the hospital waiting to go home, which we think will be after dinner. I don't need the carb count training, and we already know what we are doing. The big thing for me know is to try and get the pair of them treated at the same hospital, so I will be on the phone to UCLH tomorrow.

Once again I am thankful that we knew the signs and she is not 'ill', and its a relaxed diagnoses. looking back there were a couple of other signs, my mum had noticed a slight weight loss, and the mood swings, but we explained them away.
Anyhow, it is what it is, we couldn't prevent it, we can't change it, so now we will look forward to playing blood sugar bingo at meal times, and getting on with it.