Iris's Blog

Our apologies for the recent lack of news. Basically, there hasn’t been much to say in many ways, we have just been busy “doing”, and enjoying our now relatively “normal” existence!

Iris has had some fantastic milestones; Taking part in her school sports day (bringing a tear or two of love and pride to more than a few eyes!)  Performing in her end-of-year school show. Falling over and laughing about it. Going to after school Spanish club with no parent, nanny, or teacher aide with her. Playing rough and tumble games with Athina. Starting to read, and with a lot more effort, write. Planting and growing an enormous pumpkin plant in our garden. Going on an after-school play date. “Swimming” without clinging onto Mummy, and actually laughing (not crying!) when she gets splashed. Drawing pictures of herself with extremely long hair!

Each little achievement (however delayed it may or may not be) makes us SO proud. Iris will always need to try harder and longer than most people to gain what seem to be relatively small and effortless skills and confidence. But she simply does not give up, which is why I admire her spirit and her will so much.

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The slow process of getting the growth hormone injections is happening, with it due for delivery in a few weeks. Athina (not the tallest 3-year-old) is almost as tall as Iris now. With a 2 & 1/2year age gap we get asked if they are twins. They just laugh! The eye ops have been a great success – it’s difficult to tell that they are not quite 100% straight still. The hearing loss is stable (which seems the best possible outcome) Concerns which we had about ongoing “congestion” in her ears were relieved when Mummy pulled out two (disgustingly huge!) lumps of solid wax from her ears a few weeks ago. Although I’m not going to confess to GOSH that I did it using (sterilised) veterinary instruments!

We have been asking for some time for Iris’s next MRI scan to be done conscious instead of under GA. There is alwys a long wait for GA slots, (especially now that she is “low priority”, i.e. not sick, hooray!) So the scans which should be every 3 months have been 4, almost 5 months apart. Which we hardly noticed until a couple of weeks ago. Luckily there is a scan booked for Tuesday, under GA. There is also a non-GA slot available Monday, but if we take that and it doesn’t work out, we will go back on the waiting list for the GA scan. And this time we don’t really want to wait.

Athina had a cough & cold, then Iris got it. I always feel strangely elated when she gets a cold, because she ISN’T neutropaenic, and we don’t have to worry! Iris herself does tend to worry about it a lot,she has no perspective on being sick in a normal kid’s way and simply getting over it in a few days. Fair enough.

The constant sniffing (Mum now, I know how annoying it was for you when I didn’t want to blow my nose) causes Iris to cough,and then to throw up. She has a very sensitive gag reflex now. Brushing her teeth usually makes her retch – but each day it makes me happy that the days of daily & nightly vomiting are behind us now 🙂

The late nights and changes to routine with recent events, appointments, parties, days out etc. have meant that she is often totally worn out by bedtime, so occasionally Iris has wet her bed at night (Athina somehow has the best bladder in the world, and never does!)

But if we rewind to November 2009, this is how it all started. Wet beds. Throwing up in the morning.

We are very scared.

There was also a lot of upset behaviour (probably headaches) and worsening balance. Which we don’t have this time at all. So it’s probably just the sniffling. But please keep your fingers crossed, and/or pray for Iris this Tuesday. We are hoping to get the results sooner than the usual week it usually takes.

Iris herself isn’t worried one bit! She doesn’t even cry when she’s sick, just quietly goes into the bathroom and vomits in the sink or loo. She told me that her brain tumour isn’t going to come back.

I hope she’s right.

In the meantime, Athina’s favourite book is now “Mary has a Brain Tumour”. I guess every little sister wants to emulate her big sister (except me and you of course Ali) Athina says she will get a brain tumour, but it won’t hurt, and she won’t vomit. She will just go to hospital and get presents and go to the cafe. She would like a portacath (not a hickman line) and a PEG tube (not a nasogastric tube)

I hope she’s wrong!

Guess this is parenthood, there is always something to worry about. But Iris has taught us that there’s always something to smile about too 🙂