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Saturday, 25 April 2015

Epic Fail

December. December. That's when I last spoke.

Sorry. I'm back, we're back. To continue our adventures, our story.

I won't bore you with the recap of the past four months, you'll catch up. Just know that we are all well and in a good place.

So on with the story.

I went in for some PEG button changing training the other day with the school nurse. Zack's Mic-Key button has been in place now for five years and every three months it needs to be replaced with a new one.

This job was always done by a nurse. I avoided it at all costs, too squeamish (wimpy I know) but also the fact that he once pulled it out by himself and then it refused to go back in firmly boxed off any chance I had of going near it. 

However, given I am often on my own with him and he has a taste for getting hold of his button and/or feeding tube I thought it was about time I come face to face with my nemesis.

So here I was at 3.15pm in school looking at a pretend baby doll that has had a really rough start in life. I mean that baby has a tracheostomy, a cannula, a peg and some other hole in the poor things stomach. Also, small child, the curious four year old enquires about each and every added extra that appears on the babies body. I swear by the time she's 10 she will have the knowledge of a first year medic student.

Pretend doll didn't play along, the peg wouldn't go back in, things did not bode well.

We move over to real child who was very happily chilling on the floor listeining to music having been very unimpressed with the school visitor, subject matter being gardening.

I get the peg out okay, by this point Zack is highly amused at my attempt to not butcher his stomach and does not co-operate by lying in a relaxed manner as I shakily went in for the placement of the PEG. Would it go in? My arse it would, nope it kept wobbling and bending all over the shop. Which only increased Zack's capacity for laughter and my inability to get over my fear of pushing on.

In the end I quit and the nurse popped it in.

Epic fail. I flunked my first attempt. I didn't even flunk my drivers test first time and all this is is putting a small plastic tube into a hole. Oh, did I mention it's only a hole that goes directly into my child's stomach. No pressure then.

Agreement was that I have another go in three months time.

I came home with both children and told Dan about my flunking of the button change. By the way, he has successfully completed his training no problem. 

Yeah I thought you might find it difficult was his first response. You kind of have to wiggle it about. You'll get it though. 

Yep, I'll get it. But for now Nurse Gould, if that button comes out, you're up.

Friday, 5 December 2014


We are here. I just haven't had five minutes to myself to write about our crazy, busy life.

Quick synopsis, Zack is good, Scarlett, good, Dan good, me working on cloning myself so that I have more time.

I will update soon. Promise. Stay with me. 

Sunday, 21 September 2014

Where else would you want to go?

Having completed two half days and a very good full day, Zack went to school for two hours last Tuesday morning before I get a call to collect him as he wasn't very happy. 

Yet again, we are met with a suspected chest infection, another course of antibiotics and a Pants that is coughing up a load of nast and updating his seizure numbers to a higher frequency.

Talking of seizures we have now increased medicine two and so far it has made not one dot of difference. This could be because he is ill which means we do the waiting game and see if things improve. 

However we just cannot get him right at the moment. Fingers crossed he improves in the coming days. Don't get me wrong he is still very happy and laughing a lot but I am sure he is thinking that he is now much too cool for school and is attempting the world record of a home staycation. 

Talking of staycations, I must share our photos of our brilliant holiday in the UK. We stopped at Cornwall for a few days before travelling to North Devon for the Great British seaside extravaganza.

The first spot we stayed in was, how can I put this politely, well, imagine what an old granny's cottage might look like in the 1970's, you know the one that has a few dogs, is a bit lapse with here personal hygiene. You get the picture? We stayed one night before I complained to the owner who moved us into a much nicer cottage. By the way prior to this move, he offered me a £25 voucher to use at the local pub. Nice try.

Cornwall was good, we visited Padstow, had some fish and chips from Rick Steins posh chip shop, (rip off price) but it was delicious. 

Oh, Padstow, that reminds me. A short tale of disability discrimination. Too long for this post I shall tell you in the next one.

We also visited Port Isaac, bit boring I thought. Very pretty, lots of expensive shops to tear the money out of hands of middle class tourists but pretty. Meh. That would be my final comment.

Before we drove up to North Devon we stopped at the Eden Project. We've been before and it is good, but the thing that impresses me most every time is the Changing Places bathroom. A proper disabled toilet with a changing bed that goes up and down, even showering facilities. Amazing, it makes all the difference.

North Devon. We booked an apartment in Westward Ho and oh yes, it was fabulous daaarlings. Loads of space and a hot tub on the roof garden. We had floor to ceiling windows that overlooked the atlantic ocean. My motto for the week we stayed was "Where else would you want to go when you have Westward Ho." (You can have that for free Westward Ho tourism marketing people, actually forget that if you use it I'm suing, but feel free to offer me some monetary value).

Ok, it's only a little seaside village and some of it is a bit chavy, but there are some good restaurants and Zack loved his hot tub plus in our en-suite there was a whirlpool bath with lights which he was even more impressed with. I swear we have both never been so clean, by skin was beginning to shine by the end of the week. 

Scarlett was addicted to the beach and I'm sure as the day's wore on she was morphing into a diddy surfing chick. The whole atmosphere was relaxed and easy going, what also got me was that nobody batted an eyelid about Zack. Usually you get the staring, the really rude staring but here people just looked smiled (not the pity smile), some people would come and say hello and chat to Zacky like he was just an ordinary little boy (which is exactly how we see him). It was a refreshing change. I was hoping I would get left behind in the Penthouse with the 55 inch 3D tv and full sky package. Alas it was not to be.

Here are some pictures. Aaaaaah good times.

I'm telling you mum Rick Stein better bring me my Scampi and Chips soon or else I'll go in there and cook it myself. Understood.

Aaaaaaah beer, it makes me so funny.

Swift drink of the rough stuff before I start. Actually he was very good.

Told you we loved the toilet at Eden Project, though it does like Scarlett and I are in desperate need of the loo.

I love my hot tub.

Yes I do.

You know,  just chillaxing,

The view from our window.

Again, where else would you want to go?

There was a sweet shop underneath the apartment, never give three year olds free choice.

Thursday, 11 September 2014

Keep a watch on it

You know that botox stuff? Turns out it's quite good. Normal service has resumed for Zack. Back to full on lying across me cuddles, back to standing frame, back to straighter leg (not entirely straight but much better) and back to school.

School. A new class and what's more, a new school. Kind of. The old school that he was in has moved to a new site which is lovely except for the parking facilities and the fact that it is absolutely crazy in morning.

I went in with my usual million and one concerns, Zack went in and proceeded to sulk nor speak to anyone. He has started back with two half days. Today's half day he came out looking shattered but apparently had a great morning. I am hoping this continues.

His epilepsy remains difficult. He is still having bouts of seizures, one day they are not lasting as long the next he is having longer sessions but less of the amount of clusters. We continue to keep a watch on it and I have found a great app on the Epilepsy Society website that you can use to keep a diary of seizure activity.

I hope his leg remains well but who knows. When the botox wears off it could go back to how it was or remain normal again. I am hoping for the latter.

Sunday, 24 August 2014


I just want to put a quick post up to say thank you to all of our friends and family who kindly made a donation following my Mother's funeral.

We had agreed that the money should go to a cause that was important to my Mum and so we picked Cerebra, a charity dedicated to helping children and their families with disabilities. I know from experience how helpful Cerebra has been in providing us with vouchers towards much needed speech therapy. Most recently they have developed the Go 2 Seat, an invention that Zacky tested out and has helped many families just do normal things like the supermarket shopping. A brilliant and growing charity that deserves some more recognition.

The generous donations reached well over £1000 and to that we are very grateful.

Here is a link to an article which featured within Cerebra's news page.

Thank you everyone, I know my mum would have been delighted. 

Saturday, 23 August 2014

Bent leg

As I currently type this I have a little boy taking a nap on my bed having yesterday been under general anaesthetic for a leg that would not bend.

For over two weeks Zack would not bend his left leg he kept it guarded and whenever we tried to lower it he would cry, great sobs and howls. Zack is a tough little guy, he can tolerate quite a bit of pain so I know whatever the problem, it was serious.

Thanks to a great consultant and team at Alder Hey we managed to get in for some botox treatment to help alleviate the pain of his bad leg. Whilst the problem does not seem to be hip related as is common in children with cerebral palsy, the consultant is almost convinced it is muscle related. 

Zack now seems more comfortable, so God knows what pain he was in before. He is still white as a sheet and won't straighten his leg entirely but it is an improvement.

Following on from the leg problem, Zack has introduced Dystonic movements to his bag of tricks. What this essentially means is his other good leg will all of a sudden go straight out in front of him, and his two arms would straighten across his body and he would be stuck. Stuck in a muscle protest that he can't control. It's horrible to see and awful to know it is causing him discomfort. We have been prescribed Diazepam to treat them, so far we only give it him at night, which essentially knocks him out fast asleep. Giving us all some respite.

I can't believe how difficult this year is becoming. I thought this was going to be a great year, a happier, easier year but it is turning into our year of hell.

I try to be upbeat in this blog but equally I would be lying if I didn't also tell the truth of how dark things can get sometimes. I know that everything is relative to all people but when I hear parents complaining that their child has had a cold or a tummy ache I just think you have no idea. No clue, how easy it is for you. 

In fact the differences in our life and that of a 'normal' family become ever so clear when you have those friends over. They try to get it, they try to show the right amount of sympathy understanding but they are so far from understanding. I think some of them just see the downright awfulness of the situation. They don't see all the good bits with Zack. That's very annoying. Equally its such a relief that I have friends in a similar position that understand all the difficulties and stress that comes with our children. And when they nod their heads in agreement it isn't with an  'aaaah yes it must be awful' smile but a 'shit yes, it's bloody hard but you'll make it through' nod. 

Truth is, sometimes I wonder how we will make it through this tunnel.