Family Matters : Retinoblastoma

This is a bit of a more serious and personal blog, but one I have wanted to write well, pretty much from when I started the blog. 

Most people haven't heard of retinoblastoma (Rb), possibly seeing the odd poster at a children's clinic but that's about all. The reason I know about it, is that my sister had it. Retinoblastoma is a children's eye cancer.

My sister had it as a toddler and lost her eye to it, resulting in a prosthetic eye. As a result we (her sisters) and her child was all tested and thankfully this hereditary disease has not been passed on. I don want to focus on the details of her story as that is her story to tell and not mine. But what I do want to do is a raise a bit of awareness in what it is and what to look out for.

What is retinoblastoma:

The NHS website describes Rb as "Retinoblastoma is cancer of the retina. The retina is the light-sensitive lining at the back of the eye. Retinoblastoma causes the cells of the retina to grow rapidly and out of control."

"To check for retinoblastoma, an eye specialist will examine the child's eyes by shining a light into them using special equipment called an indirect ophthalmoscope. If retinoblastoma is diagnosed or if there is a family history of retinoblastoma, the child will be checked by screening every few weeks or months. The frequency of this screening reduces over time but continues for five years"."

This is the link to the NHS webpage (http://www.nhs.uk/conditions/retinoblastoma/Pages/Introduction.aspx)and the Childhood Eye Cancer Trust (http://chect.org.uk). If you are looking for more information. 

What to look for 

From more personal experience, my mum always was careful to take pictures of us with red eye, in my sisters case the red eye only showed on her healthy eye and was one of the indications that something is wrong. Obviously times have changed in the last 30 years, and cameras have automatic red eye reduction, but it won't hurt to take that off for a few snaps just to look at your child's eye health!

The NHS website also lists these warning signs: 

It's important to be aware of the warning signs of retinoblastoma. The signs may include:

• Abnormal reflex in the pupil – usually, the affected pupil reflects white, like a cat's eye (see the picture on this page). This may be spotted in photos, where only the healthy eye appears red from the flash, or it may be noticed in a dark room or a room lit by artificial light. 
• A squint - one eye may turn in towards the nose, or out away from the nose. 
• Poor vision – your child may not fix their gaze on faces or objects or they may not be able to control their eye movements. This is more common when both eyes are affected.

I hope you have found this information useful! If in doubt, check it out! 

Sleep child sleep : Controlled Crying

I'm I haven't made it much of a secret that Tom has not been sleeping well. Tom used to be a good sleeper, when it was fine to pop him on the boob and back to sleep he would go, weyhey. But then he got older and this wasn't such a good solution, namely, it stopped working (dam). So after much late night googling, because what else are you going to do when your child won't sleep, I found the different types of sleep training.

I think Tom was around 8 months when we first did sleep training, I found a lot of my information on BabyCentre (http://www.babycentre.co.uk/a1027930/crying-it-out). I decided to let Tom have a bit of a cry before I would go to him and would then ask him to lie down and once he laid down, ask him to go to sleep, if he didn't then I would lead the room and return and longer intervals each time. It sounds so simple, it's not. 

I do not stick to this if Tom is waking when he is ill or teething, this means I have been through the sleep training around four times, so I am pretty confident with it. My key advice, do it when you are nearing the end of your tether (weird I know), I need that desperation to need to sleep to be able to let Tom cry and to not give a fig what the neighbours think.

The first lot of sleep training was the hardest, it took hours. I would spend my night sitting in the bathroom reading 'How To Be A Woman' by Caitlin Moran (great book!) whilst waiting for the next interval and blocking out the crying. It was really tough, but the results came in less than a week and lasted until Tom started teething again, so it was really worth it. 

I will say that each time I do it, it gets quicker and easier. It's like Tom remembers what he is needing to do and can reset himself back to it. I do not think it harms him in any way, I would not do it if it did. When I am badly sleep deprived I am not as good a parent, I get headaches, I can't concentrate and I am less present, by doing this we are both better rested and have a better quality time together.

I know this isn't for everyone and some people feel very strongly for or against any form of sleep training but my view is that some babies need help to learn how to settle themselves. Tom would get caught in a loop of needing boobie then having his back rubbed for up to an hour, this led to a very tired mum with a back up the swannie, this was not working for both of us. Instead we are on day two of sleep training and he is back to sleep in 30 minutes, much better for both of us. 

On that note I best go to sleep! I am going to have a well rested baby in the morning! 

Can we have it all?

This week is the closest I have ever got to the dreaded burnout. A combination of studying, working, running a household and a toddler that has had a reluctance to sleep has pushed me to my limit. I took a day of work to rest and recoup and had a think about my life balance.

I feel I have sacrificed blogging, something I take so much pleasure in and use as an outlet. But, in contrast I wouldn't think of not doing the housework (the horror). So time to readdress the balance, what do I want, what do I need and what can I drop.

I have come to the conclusion that I can have it all, I will blog, I will clean, I will work and of course I will parent. But also, I will rest, I will ask for help, I will leave the washing until I am ready to do it. I will be a bit kinder to me. 

I feel I am bombarded with images of the perfect balanced and blow dried mother and it makes me feel inferior. But then I go on my Instagram to see the real parenting, the need for coffee, the messy house, the calling out for support and I remember that I don't want to be a glossy mum, I want to say fuck it and eat cake and I want Tom to see that I am trying my hardest but sometimes it's ok to need help. 

In short, eat cake, screw the washing and be happy!

Peace and love X

But what have you learned?

Recently I have talked parenting with a few childless (and well rested) friends, a question that has come up each time is 'what have you learned?' 

Well, I've leaned lots of things, I've learned to change a nappy whilst Tom is standing up (read: running away), I've learned to have a conversation whilst Tom is loudly playing (read: screaming and running away) and and I've learned to clean my house, make dinner and write an essay whilst chatting with a toddler (read: nodding along to him screaming). Basically you learn to multitask. 

But there is something I haven't really leant, how do you deal with not sleeping? Mr B is starting to be up with Tom during the night more and he thinks that I've already learnt to cope with the not sleeping but I'm not so sure. 

I am so tired, I am so tired I forgot the word spoon, unusual considering they are now the implement I used about fifty times a day. I am so tired I now do microsleeps, whilst walking. I am so tired I actually crave sugar for energy, I had not experienced this before! 

I don't know if you get do learn to manage the lack of sleep? I am running on the fumes that one day he will just give it up and sleep properly. Or that I will become a supreme being who can survive on Reeces Pieces and cold tea.

So I guess this is a bit moany and not particularly reassuring to the person looking for the answer of how to get a toddler to sleep through the night. But, it shows thy no matter how tired you arroyo can gulp down that cold tea, spray on that dry shampoo and crack on. You can do it mama!