Where’ve You Been?

This is the question I have asked Jude this evening time and time again….. Jude has had a couple of months now where he hasn’t really been himself.  He’d stopped interacting with us, stopped smiling and a laugh……. nowhere to be heard.

I took him to Birmingham Children’s Hospital last week to discuss his diet and to talk to the neurologist. I went through all of the symptoms Jude had displayed and expressed my worry about where my little boy had gone.

Two weeks Jude had a vile rash all over his body that lasted about 7 – 10 days, it was like something I’d never seen before and to be honest I was quite worried. Obviously by the time I went to Birmingham Children’s the rash had almost disappeared.

The doctor decided to take Jude off his topirimate as over a long period of time it can have an effect of making a child withdrawn, listless and very very quiet.

Over the past few days Jude has been more irritable and has seemed to have more seizures, this obviously has made me even more anxious.  Ian said he felt he was coming out the other side (so to speak) and coming back to us.  I think you will agree that Ian absolutely has the right to go ‘Nah nah na nah nah’ to me tonight 🙂


Home is where the TV is.

It’s been a while little blog, perhaps you thought I had deserted you, left you alone out there on the world wide web to fend for yourself. Sorry little blog.

So yes, we did move in and yes, the first thing I did was put my TV together wired up the amp and speakers and settled back to watch the box. We had no internet for a while – that was strange, we talked, we sat around the table an ate and began the process of home making. Interesting times but thankfully we are back, once again connected to the real world virtually.

When me and Rachel took on our first house, it was empty and we pretty much started from scratch. First the TV, then the beds and sofas and eventually the kids. It was home and the idea of leaving was tough but we knew that where we were going would be special too and we haven’t been disappointed. Everything works for a start – at least when I found out how to work it it worked. We were in for a few weeks before I learnt how to set the timer for the hot water, the grill on the cooker seemed only to have two settings – off or burnt, we’ve set the smoke alarms off on numerous occassions.

But the cooker…..

…the people who lived here left this for us (bless them indeed). And not just the cooker, but a really nice glass dining table and leather chairs, a couple of sofas and some wardrobes and drawers for the kids rooms. And some very nice lamps that I couldn’t figure out how to turn on. But the cooker that burns is a thing of beauty – at least Rachel has begun to appreciate it’s functionality as well as it’s beauty or else we might still be eating sandwiches and take aways.

These little things made making a house a home much easier and the couple who lived here have clearly done an excellent job decorating and fixing the place up. No doubt at all, this is home and we love it.

Jude’s been a bit sorry for himself the past few weeks. The ketogenic diet is going fine and we are pretty stable with his Ketone levels but, as yet, no change to his seizures. But he’s been flat, less chatty and no smiles. No smiles for a while now. He’s picked up a little in the last few days and maybe this is just a blip but I miss my happy, smiley boy.

He’ll soon be three and at that age Jude qualifies for additional benefits. Because of his disability, Jude gets a small weekly payment called Disability Living Allowance and from the age of three this is topped up and this means we can get a new car on a scheme called Motability. This scheme uses the additional money to lease a car and although we have to pay a little up front we will hopefully be taking deliver of a Wheelchair Accessible Vehicle in the next few months. Transferring Jude from his wheelchair to his car seat is becoming unmanageable.

This is the car we’ll be getting. A lot of the Wheelchair Accessible Vehicles are converted vans and the wheelchair is secured in the very back and we wanted something that put Jude in between his two brother. One so he was part of the family and two so he could be looked after more easily.

We will also be getting a new bed for Jude too

We want to get Jude into his own room but also in something that will look after our backs too – with luck, this bed will last Jude a long time.

And it seems on the medical front neither of the other two boys (or Rachel) want to be left out. Nathan is having on operation on his hips next Spring to have two metal plates inserted to correct something or other which will improve his mobilty and Joe broke his thumb yesterday but at his age it is a badge of honour rather than something painful and inconvenient. Last friday Rachel had an operation to take out a wisdom tooth and suffered. No doubt she will testify that as ever I was the perfect carer, lacking only in patience, compassion and empathy.

And the TV is great. Just where and how I want it.