Epilepsy Awareness

EPILEPSY AWARENESS MONTH

Yes my friends, it's here again. Time for everyone affected by Epilepsy to turn Purple.
It's out of a mark of respect. It's to remember those who've been lost to it. It's to teach people what it is and how it blights our lives. It's about knowing the facts and taking time out to tip your hat to the strength it takes just to out one foot in front of the other some days.

Zak has Epilepsy. It comes top of the "things that scare us" list.
He has LENNOX GASTAUT SYNDROME which is diagnosed by how it presents both clinically and on EEG. There is a specific EEG pattern. A slow spike and wave is seen. It also shows that Zak is having continual clinical and sub clinical seizures, of varying type, which are resistant to medication.
Physically, LGS means that Zaks development is regressed. At the ripe old age of 7 and a half, he functions at a level similar to that of a new born.

Zaks current favourite seizure type is a bit of an odd one. We find it very difficult to pin point the actual terminology of each of his seizures, so for now, we'll call this one the "pokey eye out one". It is most definitely TONIC in nature, as it involves a period of intense stiffening of his body, mainly his arms, which will simultaneously rise, bent at the elbow, making a bee line for his eyes/face. He has caused himself so many facial injuries but scratching, punching and poking his eyes, it's unreal.

His other seizure types are generally tonic, but he also has some Absence seizures, some are clonic and some we really just have no idea where to start pinning labels to.

What we do know is that 11 Anti-epileptic drugs down the line, and we're yet to find anything that makes even the slightest difference.

I couldn't possibly talk on here about November being Epilepsy Awareness month, without telling you that NOVEMBER is also DIABETES AWARENESS MONTH.

Part of the reason I have been so behind on keeping up with Zaks blog is that in November 2013, his beautiful big Sister, Ashleigh, was diagnosed with Type 1 Diabetes.
On the very day we were supposed to be going on a LONG awaited family holiday to Disneyland, Ashleigh took seriously ill. The GP told us she just had a tummy bug, when infact she was seriously close to slipping away from us.
The ambulance was called at 7 in the morning, after we discovered Ashleigh could not lift her head from her pillow. She'd lost what looked like all of her body weight over night, and her breathing was hard and fast. She looked skeletal. I've rarely been so terrified on my life, and believe me I've seen some scary times.

The paramedics arrived, and it didn't take them long to figure out what was going on. The Paramedic in charge said there wasn't even time to go get the stretcher. He just scooped her up in his arms and carried her to the ambulance waiting outside.

Less than a mile out of our home town, they had to pull over at the side of the road to try and work on her. We were losing her.... but running out of time, they had no choice but to put on the blues and two's and rush her to hospital.

It was horrific to have to stand in the wings while Doctors and Nurses rushed around her, trying desperately to get a line into her veins. But they'd all collapsed and at one point she had 2 Doctors and a Consultant stabbing needles in every part of her fragile body.

Thank god they did, because without that, she'd not be here today.

20 Cannula attempts later, she was having fluids pushed through. She needed Potassium, and Insulin to try to bring her levels back to a healthy point. There was talk of transferring her to Manchester Children's Hospital, and ICU were on standby.

It took about 24 hours, but they finally brought her back to us.

A week in HDU, a diagnosis of TYPE 1 DIABETES, and a fast track session on how to test her blood sugar levels, and inject her own Insulin, and the rest was up to Ashleigh.

In a few days in will be exactly one year since she was diagnosed, and oh my god, I could not be more proud.
She has sat her first year of GCSE's and already has enough marks to get the place at College she wants. We even spent the night at the college of her choice, and enrolled there and then.

She now uses an Insulin pump, where instead of guessing how much Insulin she needs and injecting it 4 times a day...now, she just works out exactly how many carbs are in her food, programmes it into her pump and the pump does the rest.

It's still early days really, but already I am able to take a back seat. She does all of it herself....only ever needing a kick up the bum to get out of bed in the morning, but then, she is still 15...

                                   These two little devils make me proud every single day xx

Bumpy journeys.....

Wow, Halloween is here again. That means it has been way too long since I last updated this blog. I am terrible at keeping up with it. But as long as no-one minds a very intermittent blog, then service shall continue as normal.

Last week we had a little get together with some friends who were in the original special needs club called Koalas.
The group was set up by Mums, for Mums of children with special needs. Zak was one of the founder members.
It was amazing seeing how grown up they have all become....and so tall! even those who were very premature, tiny, little ones when I last saw them...
It was though, quite sad to see some missing children. Those we have lost along the way. But never for one second have we forgotten them. How could we... they left such an imprint on our lives, in our hearts. Gone, but definitely not forgotten xx

So, Halloween fun aside, this last few months have been a lot of hard work. So many huge decisions hung in the balance, and lots of tears, deciphering whether or not any of them were the right decision at all.

Zaks School, who have served him well for 5 years now, have kind of come to the end of their ability to give Zak the 100% he needs.
There was no doubt in my mind, what so ever, that the staff there love Zak with all their hearts. They've cared for him, and myself, for a long time, and have felt much like family. But over the last year or two, we've seen services cut, Ofsted standards slip, and some people not fulfilling their promises to Zak. We have fought to keep vital services available. Some we've won, more though, we've lost. We spent a whole year fighting to keep hold of a nursing service on site, to enable Zak to be safe in School. We won this fight, even though the nurse only returned on a part time basis, and shared between two sites. But it was a compromise, and one I could sort of live with. But as one fight came to a close, another opened, and when we were informed that the Physiotherapy in School was going to be lost, it was a fight too many, and we decided that it was time to move forward.
In all of this, our aim is to keep Zak safe, happy, healthy, and in the best position to be able to gain something, however small, from being in the School environment.
Zak didn't return to School in September. We'd made the decision to change Schools, and were committed to giving him the best of everything until things were put in place at the new School.
Bleasdale School in Silverdale....although this means a 45 minute journey to School every day....it is a School that is excelling with children, like Zak, who have PMLD. They have full time, on site, nursing staff, and from what I've seen so far, their Physiotherapy schedule is outstanding. They have on offer everything that we were fighting for over the last couple of years.

So, Zak has a place in his new School. The uniform is bought, and I will be taking him in myself for a couple of weeks, to give staff time to learn all about Zak, his likes and dislikes, and most importantly his little Zakisms that make him him.

Our hurdle now, because of course, in the world of Special needs, there is always a hurdle.... is transport. In the infinite wisdom of those in suits, they gave Zak a start date in a new School, in another county....but neglected to organise any way of him actually getting there.
The irritating thing about this, is they promised us, last time he needed transport, that they would not mess about with his providers. They'd not put his run out to tender as there was too much training needed, and we'd spent the Summer of 2012 training the ones he has, after the last time they pulled this stunt on us. Not surprising though, they we not true to their word, and it now looks like organising Zaks transport to and from School may take some time.
So currently, I have no idea when Zak will officially start School.....until then, I will take him in when I can, so he doesn't miss out. And I will home School him the remainder until that time comes.

Never a smooth ride is it.....