I win! I win!

Today I won £500! Ok, not really. I’ve never won anything monetary in my life. BUT remember a while ago I applied for a Family Fund grant to buy Jude a load of exciting stuff to turn his bedroom into a sensory room!? Well, today they emailed me with my codes to buy all the bits from a specific online shop. Amazing! I’ve just spent £480 in about 20 minutes and it was so much fun. It should all be delivered in the next fortnight or so and I can’t wait to transform his room on the sly…he’s going to love it! I will be sure to take a before and after picture.

I was sure to order a swingy chair after watching him at the picnic at Jubilee House on Sunday; he spent ages on their garden swing chair with Elsa and it had such a wonderful pacifying effect on him. It distracted him out of his normal ways and he was almost behaving like a typical 10 year old. I wanted to buy things we wouldn’t ordinarily have access to so have ordered some bubble tubes, lights, colours and all round joy and serenity. I want him to feel he can go into his room to relax. He loves his bedroom so I want to make it as cosy, calming and appealing as much as possible.

Family Fund are always pretty generous and you can re-apply after a certain amount of time so it’s worth registering with them if you have a disabled child and you want something you couldn’t normally afford. There is no way I could have bought all these bits for Jude off my own back so it’s fabulous that charities are out there to help people buy what is ultimately a necessity for the fluidity of as normal a life as possible. This sensory material is the equivalent of a non-disabled 10 year olds boys Playstation and…whatever 10 year old boys like these days. I have no idea.


Go have a look if you feel they could help you.

So today was boiling hot again and I was reminded of Jude’s inability to regulate his body temperature. Poor boy just gets hotter and hotter and really struggles to cool down in anyway whatsoever. When he was a baby, I think he was a year old the first time it happened, he had a fit because of the heat. He had had a temperature all day and despite using medicines, I really couldn’t bring it back down to a normal range and had to take him to the doctor (they had no suggestions). He ended up having a convulsion in the living room and I had to drive him to hospital because the ambulance couldn’t find my house. Thankfully, mum was with me at the time so I was able to sit with him whilst she drove. I couldn’t sit him in his car seat because he was so rigid and crazy so I sat in the back of the car with him on my lap/on the seat itself for the entire 25 minute journey.

The worst time was when he was 3 and he had a fit whilst in the bath. He had been playing a game that he loved to play every evening which was to lie under the water with just his nose in the air so he could still breath and therefore lie at peace for as long as possible. He was so content. This time, he went under as usual but stayed there longer than normal, his lips went a blue colour and I realised with absolute horror that he had stopped breathing. I don’t really remember much of the next few minutes but apparently he was only like this a very short while and as soon as I had laid him on the bed, his lips regained their colour and he started regaining his breaths. Never. felt. such. fear. Honestly, this boy has put me through the ringers but I think this was one of the worst experiences. We called an ambulance and by the time it arrived he was much better, still lying down but fine in himself. The paramedic told me that having a fit is similar, in terms of tiring the body out, to running a marathon. They took him in for a check up but we left a few hours later having literally just sat on the ward until Jude was able to get up and walk again. The doctors said they would test him for a few things, i.e. epilepsy, if he had another fit but luckily, he hasn’t had one since then.

Anyway, my point of all this is that today because of the heat, Jude has been suffering again. His eczema has flared up and he had a slightly blotchy face when he eventually fell asleep. He also felt sick and looked generally unwell. I haven’t seen him affected by the heat like this for a while and it has scared me into realising that a lot of Jude’s issues will not leave him even as he gets older. I have no idea how to help him with this one. To ease the eczema I avoid dairy, artificially laden creams and using harsh washing liquids. I will discuss eczema again another time as it is such a massive topic with which I have had a lot of success and failings!


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