Sunday, 28 October 2012
A blip on the road
So, things have been pretty settled recently. Very few hospital visits, just keeping meds in check and increasing as he grows. He has been on the top dose of Topirimate now for about 3 weeks, and although there has still been no decrease in seizures, we had kind of come to the conclusion, that for Zak, life without seizures is just not going to happen, and so long as there are no dramatic increases and they aren't upsetting him or making him miss out on life, then we will try to go for as long as possible before rushing to speak to the neurologist.
Anyway, he suddenly developed a 'twitch' recently. I had no idea what it was or what was causing it. It was quite subtle, just a repeated, slow twitch of his left arm, head and chin. But after 28 hours of continual twitching, every 2 or 3 seconds, enough was enough, and I called his consultant for advice. She told me to give him his rescue medication (Midazolam) as it sounded seizure to her. So I did, after walking roung the house crying for an hour, knowing what I needed to do. I hate Midazolam, because the last few times I have given it to him, it has made the seizures MUCH worse....as it did this particular day. He went from having this small, subtle twitch, to having huge tonic and Gelastic seizures. The Gelastics were new, and for a boy of 5 and a half, who has never been able to smile...I was mesmorized by the fact he was now not only smiling, but out loud laughing!! My multitasking came into full swing then, talking on the phone to my hubby, holding Zaks hand, reassuring him, and grabbing for my camera! I didn't care what form it came in, but my boy was smiling!!!
The meds didn't work, and as soon as he was out of the midazolam daze, the arm twitching continued...so after a quick call to the doctors, we were off to the Infirmary.
He baffled them, they hadn't got a clue what was going on, and had to call the neuro for advice.
They came to the conclusion that this new twitch was something called Dyskinesia, and was the result of one of two things....either the brain injury/Cerebral Palsy evolving as he is growing, and this would be just another phase, another name to list in his ever growing list of conditions.....or.....it is a side effect of the Topirimate. Either way, the treatment would be the same. We were prescribed Diazepam. Now, he has been on this before, and was taken off it as it made him too sleepy. The new dose was over double the previous amount, but trusting the neuro knew what she was doing, we went home and administered the first dose....so far so good.... the next day, he seemed ok....still twitching, but ok. So the following day he went back to school.
At about 2pm, I was in Morrisons, and I get a tanoy saying, "could Mags Hall please report to the customer service desk immediately"....I needed to get to Zak asap as they wanted to blue light him to hospital.
When I got there he was sound asleep, but very deeply. The School nurse, who knows him well, said he had been very yellow, sleepy, having increased seizures and his breathing was fast and shallow. I knew instantly what it was... the bloomin Diazepam! We ended up back in hospital, explaining the previous few hours, and decided to take him back off the Diazepam.
He was much more settled, although still having the movement in his left arm.
At times like this, there are sooooo many questions that no-one can seem to answer. It's maddening that we play Russian Roulette with him, but know that we have no choice.
The old phrase of "suck it and see syndrome" has never been so true.
If one anti-epilepsy drug doesn't work, we loose it and try another...and that's how it goes, until we run out....then what?
And it seems this is the way it all works. So we are waiting now for an appointment to speak directly with the neurologist. Should be interesting.... so many questions....
Is this new twitch Dyskinesia or seizure?
Should we be treating it?
Is it the brain damage or the Topirimate?
Do we stop the Topirimate or just live with the twitch?
Does this mean things are changing?
Do we continue with Midazolam?
Why does it make his seizures worse?
What else can we try?
And this ladies and gentlemen, is what goes round in my head, every second of the day...
Anyway, he suddenly developed a 'twitch' recently. I had no idea what it was or what was causing it. It was quite subtle, just a repeated, slow twitch of his left arm, head and chin. But after 28 hours of continual twitching, every 2 or 3 seconds, enough was enough, and I called his consultant for advice. She told me to give him his rescue medication (Midazolam) as it sounded seizure to her. So I did, after walking roung the house crying for an hour, knowing what I needed to do. I hate Midazolam, because the last few times I have given it to him, it has made the seizures MUCH worse....as it did this particular day. He went from having this small, subtle twitch, to having huge tonic and Gelastic seizures. The Gelastics were new, and for a boy of 5 and a half, who has never been able to smile...I was mesmorized by the fact he was now not only smiling, but out loud laughing!! My multitasking came into full swing then, talking on the phone to my hubby, holding Zaks hand, reassuring him, and grabbing for my camera! I didn't care what form it came in, but my boy was smiling!!!
The meds didn't work, and as soon as he was out of the midazolam daze, the arm twitching continued...so after a quick call to the doctors, we were off to the Infirmary.
He baffled them, they hadn't got a clue what was going on, and had to call the neuro for advice.
They came to the conclusion that this new twitch was something called Dyskinesia, and was the result of one of two things....either the brain injury/Cerebral Palsy evolving as he is growing, and this would be just another phase, another name to list in his ever growing list of conditions.....or.....it is a side effect of the Topirimate. Either way, the treatment would be the same. We were prescribed Diazepam. Now, he has been on this before, and was taken off it as it made him too sleepy. The new dose was over double the previous amount, but trusting the neuro knew what she was doing, we went home and administered the first dose....so far so good.... the next day, he seemed ok....still twitching, but ok. So the following day he went back to school.
At about 2pm, I was in Morrisons, and I get a tanoy saying, "could Mags Hall please report to the customer service desk immediately"....I needed to get to Zak asap as they wanted to blue light him to hospital.
When I got there he was sound asleep, but very deeply. The School nurse, who knows him well, said he had been very yellow, sleepy, having increased seizures and his breathing was fast and shallow. I knew instantly what it was... the bloomin Diazepam! We ended up back in hospital, explaining the previous few hours, and decided to take him back off the Diazepam.
He was much more settled, although still having the movement in his left arm.
At times like this, there are sooooo many questions that no-one can seem to answer. It's maddening that we play Russian Roulette with him, but know that we have no choice.
The old phrase of "suck it and see syndrome" has never been so true.
If one anti-epilepsy drug doesn't work, we loose it and try another...and that's how it goes, until we run out....then what?
And it seems this is the way it all works. So we are waiting now for an appointment to speak directly with the neurologist. Should be interesting.... so many questions....
Is this new twitch Dyskinesia or seizure?
Should we be treating it?
Is it the brain damage or the Topirimate?
Do we stop the Topirimate or just live with the twitch?
Does this mean things are changing?
Do we continue with Midazolam?
Why does it make his seizures worse?
What else can we try?
And this ladies and gentlemen, is what goes round in my head, every second of the day...
I have a new camera and I'm not afraid to use it!
I've always loved photograghy, and I adore my kids.... what better combination does a girl need!
One of the single most important things I do, is to take photo's of my kids, and Zak in particular. These pictures hold memories in one frame, they bring back a million memories with one glance, they imortalise our lives and days gone by. We forget the little things every day, and one look at a photogragh and it all comes flooding back.
I will happilly click away in the good times as much as the bad times, because when this journey is over, they will be all I have left to hold on to, and to help me take another breath to be able to move forward.
And to be honest, with a little practice, I think I could be quite good at it!
What do you think?
One of the single most important things I do, is to take photo's of my kids, and Zak in particular. These pictures hold memories in one frame, they bring back a million memories with one glance, they imortalise our lives and days gone by. We forget the little things every day, and one look at a photogragh and it all comes flooding back.
I will happilly click away in the good times as much as the bad times, because when this journey is over, they will be all I have left to hold on to, and to help me take another breath to be able to move forward.
And to be honest, with a little practice, I think I could be quite good at it!
Tuesday, 28 August 2012
So, a happy post....
So much going on at the minute.....
It's the Summer holiday's and we've done all sorts of lovely things. Cerebral Palsy and seizures won't hold this boy down!!
Ash has discovered a new found love of horses. It's wonderful to be able to give her something that is JUST for her. All too much of what we do revolves around Zak and his needs, so this is huge!
It stems from our annual holiday at Ribby Hall near Blackpool. There's an equestrian centre on-site, so she was riding every day! and loved it!! She's now all kitted out with jodhpurs and riding boots, and she's enrolled in the local riding School.... One very proud Mummy here!
Look at that smile!!
So, we have been on holiday, to Blackpool. We planned on doing a few of Zaks favourite things while we were there, and yes, we did manage to do them, but thanks to the addition of Topirimate (yet another drug to try and win the war on Epilepsy), Zak spent the majority of his time fast asleep, and missed it all!. He missed the Zoo, the sealife centre, the beach, the bike ride....the lot!
So, what could we do, but go to the zoo again! As the top pic shows, he managed, just, to stay awake throughout.
It was a great day, lots of fun.... even being chased by a monkey keeon on getting its little hands on Zaks medicine in his bag, didn't stop the fun.
While all this fun is being had, we have also, finally, enlisted the help of a carer.
Zak is 5 now. He's not getting any lighter, and his care needs just get more and more. I've always hated the idea of getting a carer in. It's alien to me to have someone else in my house, doing my job!
So, tentatively, we have taken the step to go for it. And we welcome S to the family.
As you can tell from the picture, she has LOTS of fun things to do, and plenty of enthusiasm!
I'm slowly getting used to the idea, although I still find it hard to step back and just let them get on with things..... but I'll get there!
I think it will be much easier when we get the house extended.... and on that matter, things are moving forward.
Now that Zaks case is settled, we finally have the means to give wee man all the things he needs to have as full a home life as possible. We are converting the garage into a downstairs bedroom/bathroom.... extending the front of the house to make space for a sensory/therapy room and larger entrance for wider access.... we're widening the doors, and most exciting of all, he is getting his very own hydrotherapy pool!! (another thing ticked off his bucket list!)
All of this is going to make such a massive difference to all our lives! Zak can have the therapies he needs, light, music, water... our carer will have room to do everything she wants without us breathing down her neck, and we can have time off! which will be lovely!
The work is due to start mid October, so watch this space for updates and pics!
Poem....every morning, by me, Mags Hall.
Every morning starts the same
I hold my
breath until I see yours
The world
stops till the moment I know
That the
darkness has not stolen you
Then in a
heartbeat I know all’s well
And the
morning sunshine streaks across the room
Bringing
life to a new day
For just a
second I look at you and everything’s forgotten
As you
stretch and yawn, opening your eyes from your slumber
You look
like any other five year old
This moment
is like heaven has allowed a glimpse of what should have been
And, a
flurry of dreams go as quickly as they first appear
For inside
your body, a battle is being fought
A familiar
foe,
one who is
so strong that defeat is inevitable
It takes
every ounce of your strength to keep it at bay
And there
are times it would be so easy to give in
But your
enemy does not belong here!
There was no
invitation!
And the
strength you gain from the love of those around you
Is all you
need to hold it back!
So you
fight!
And each new
day is a blessing
Another win
in the battle that is your life
We celebrate
and ensure your days are filled
With
happiness and memories we can hold in our hearts for an eternity
You show us
that the things that are important are of no monetary value
But of love,
devotion, hope, hard work and rewards of the heart
As the day
nears its end we reflect on new memories made
We smile and
hold you close
Loving this
moment, but knowing all the time your enemy is ever present
As the the
lights are dimmed, and stories read
I hold your
hand as you drift off with your dreams
But every
night starts the same
With a
prayer that we get to fight another day
uninvited thoughts...
But it brings with it a wave of emotion, good and not so good. The thoughts that sometimes get into my head, without invitation, and so hard to get back out, really do, sometimes, hit the hardest.
I've had quite a few of these uninvited thoughts of late. I'm sure anyone with a child like Zak will understand immediately what I mean when I say that, for the most part, these thoughts stay burried in a deep, dark corner of our minds. But just sometimes they do a clog dance, trying so hard to be noticed, and we do all we can to ignore them and keep going. But of course, sometimes they win, and we have to address them.
One such thought, is that.... from day one of wanting to have our beautiful second child, the reasons for that decision were that we never wanted Ash to be an only child. We wanted her to have someone to grow up with, to play with, to confide in, to have that one person in her life who knows all about her, the good bits as well as the bad bits....like I did. I have 2 sisters and a brother, all of whom I love dearly, and can't imagine life without one or all of them nearby or at the end of the phone if I need them.
So, despite all our dreams coming true in Zak, there is going to be a time when she once again will be on her own. But even before that, she has been duped out of her 'normal' too. She can't play with Zak in the way she should have. I cought a glimpse of her smiling at two young children in McDonalds the other day. They were fighting, not doing as they were told, and the little one in the highchair was in fits of laughter....and it broke my heart. I can't give her that....
I remind myself that it's all about perspective. That although so many things are different, he can offer excellent listening skills. He is the worlds best at keeping secrets! He never pinches her toys, or scribbles on her homework. He never invades her space or blames the marker pen on the wall on her... and so I hide the wiping of that little tear. I suck air back into my lungs, despite the feeling that every bit of emotion is suffocating me, and I remind myself of the obligatory "there's always someone worse off thatn you" phrase..... and I order our big mac.....
And that, ladies and gentlemen, is something us special needs parents do, regularly.
It can be the simplest of things that kick you, full throttle, in the stomach.... a new baby crying, the 8 week old smiling into the eyes of his loving Mother, the conversation in Asda about the sleepless nights that come with a newborn, the kid next door riding his bike without the stabilisers, the Birthday cake he can't eat, the toddler taking his first wobbly steps, and the laughter of children playing....
....When I feel those emotions start to errupt, I try to surpress them with thoughts of the family I met in hospital... the child dying of the same horrible disease that her brother had. That the brother was yet to show signs of, yet he had to watch as his sister mapped out his destiny....all the while their devoted, beautiful Mum, stood by singing Happy Birthday to her daughter, while she wore a head scarf from the chemo effects after he mastectomy.... and it's then you realise how 'lucky' we are, that he is still here to hold in our arms and to kiss goodnight.
Sunday, 1 July 2012
So, now that Zak is 5......
A milestone in itself! For anyone following Zaks story, you will be well aware that his disabilities were all a result of his...'interesting' delivery.... for which we decided to make a claim of medical negligence. Now, at this stage I don't want to go into too much detail. The case is almost complete and will all be over in a matter of 2 weeks from now.
Lots of Zaks case involved expert witnesses all giving their opinion and predictions on Zaks life expectancy. The numbers went up and down, but they'd always say that, 'if he were to live to be 5 yrs old then.....' so as you can imagine, we were very happy to see his 5th birthday. We celebrated with a fun day out at the superbowl, followed by a huge lunch at Frankie and Benny's.
So now that he is 5, what happens next? Well, according to our experts, he will most likely not live into adulthood. At best guess, they say about 19. All I know is, this is the one guarentee...they are definately wrong!!! They can't know, no-one can!!! And if losing so many of my friends children has taught me anything, it's that when it's time, it's time....and there's not a thing anyone can do about it.
So while he is still a happy, healthy little boy...I've been thinking about doing a bucket list for him.
I can't think of everything I want for him off the top of my head, so this will be a work in progress.
So far he has achieved a few things that are bucket list standard.
He has...
Met someone famous
Been in a boat
Been a Pirate for the day
Stayed in a 5 star swanky hotel
Got an award for an achievement (canoeing)
Held the olympic torch
Owned his own house
Got a personal liscence plate (HA11 ZAK) cool eh!
Got a signed shirt from a footballer
Convinced Preston Wheelchair Services to provide something NOT on their list!!!
Had a haircut at the barbers (not just by Mum)
Had several 'girlfriends'
Been a part of the olympic torch relay (Windermere leg)
Gone sledging
And this is just the beginning. There are so many things I'd like for him to achieve... there will be a LOT! We might not manage them all, but we will have a lot of fun trying!
Other things going on the list include.....
Climbing a mountain
Going rock climbing
Appearing on TV
Hit the headlines (for something good, other than his case!)
Holiday abroad
Get his own pool
Raise some money for charities close to his heart (and ours)
Dip his toes in the sea
And so, so much more..... Can't wait to get started!!
Wake up call....
There have been times on this journey when you realise just how lucky we are to be alive. There have been so many ups and downs that the old analagy of it being a Rollercoaster is bang on the mark. The bad thing though, about these rollercoaster, is that every ride eventually has to come to an end.
Harvey
Josh
Tahnee
Amy
Toby
Bradley
Ella
So many, too many, children have already lost their battle. And with each death, the fear that our time is just around the corner becomes more and more real.
Finding the right words to give those families the support they so desperately need is just about impossible. Partly because you don't want to sound like a cliche, partly because you are scared that if it comes out wrong, at a time when emotions are so raw, it will hurt or offend them.... but also because you know you will one day be in their position, and the fear just eats you up.... you can never know 'how they feel' or 'what they must be going through'... not until it happens to you.
The analagy of the Rollercoaster becomes even more real.... You start the journey full of hope and fear and excitement.... you have many ups, downs, twist and turns, you throw up, you squeel with excitement, you cry in pure fear........and it suddenly, with no warning comes to an abrupt end.... and it's at that point only, that you realise how much fun it was and that you would give ANYTHING to have another go.... Sadly though, we can't. So because I have seen the end of too many of my friends rollercoaster rides... it has made me realise that we have to take the opportunities in life when we can... don't let disability get in the way, where possible...if there is a way, try to find it!
None of this can prepare me for the end of our ride.... but like the title of this blog, you CAN'T HAVE YESTERDAY... That is ours and ours alone. These memories we are making right now, are what I will have left when this all ends. So now, my job, is to make the best memories possible, in hope that one day, I'll be able to look at them and smile.
Sending love out to all those who have lost their children. I hope you are looking back at your own memories and smiling now.... even if for now, it's just a glimps of a smile among the tears and heart break...xxx
Harvey
Josh
Tahnee
Amy
Toby
Bradley
Ella
So many, too many, children have already lost their battle. And with each death, the fear that our time is just around the corner becomes more and more real.
Finding the right words to give those families the support they so desperately need is just about impossible. Partly because you don't want to sound like a cliche, partly because you are scared that if it comes out wrong, at a time when emotions are so raw, it will hurt or offend them.... but also because you know you will one day be in their position, and the fear just eats you up.... you can never know 'how they feel' or 'what they must be going through'... not until it happens to you.
The analagy of the Rollercoaster becomes even more real.... You start the journey full of hope and fear and excitement.... you have many ups, downs, twist and turns, you throw up, you squeel with excitement, you cry in pure fear........and it suddenly, with no warning comes to an abrupt end.... and it's at that point only, that you realise how much fun it was and that you would give ANYTHING to have another go.... Sadly though, we can't. So because I have seen the end of too many of my friends rollercoaster rides... it has made me realise that we have to take the opportunities in life when we can... don't let disability get in the way, where possible...if there is a way, try to find it!
None of this can prepare me for the end of our ride.... but like the title of this blog, you CAN'T HAVE YESTERDAY... That is ours and ours alone. These memories we are making right now, are what I will have left when this all ends. So now, my job, is to make the best memories possible, in hope that one day, I'll be able to look at them and smile.
Sending love out to all those who have lost their children. I hope you are looking back at your own memories and smiling now.... even if for now, it's just a glimps of a smile among the tears and heart break...xxx
Zak holding the olympic torch. June 2012.
As always, it's been a long time since my last blog, and as always, so much has happened.
It has been 9 months since my last update, and Zak is now 5 years old. 5 was always going to be a huge milestone for us. It's the age kids officially start school, and separate from their parents more regularly. It's a time when they develope friendships, and discover a lot about themselves. They begin to discover their own identity. Zaks identity is pretty well established right now. He is our gorgous couch potato, who loves nothing more than cuddles and a pretty lady.
Zaks health continues to be good. We are so lucky that he is rarely ill...just the very occasional cough or cold. His biggest issues remain his Epilepsy and his inability to do anything for himself.
His seizures are not becoming more frequent, but are becoming more severe. Each seizure seems to gain a new bit, or a twist, and morphs slowly into new, stronger seizures. Right now the most troublesome ones are what we call 'the pukey ones' he strains and stiffens, and makes sounds and movements as if he is going to throw up...but very rarely does. These are quite distressing for him, and we are debating on speaking to his neurologist again soon to see if his meds need yet another tweak.
Zaks physical abilities have not altered. He still has no head control, can't roll, sit, smile.....but we are very much used to that, and consider this his normal. I can't see it changing. Although it will not stop us trying!
Having a kid with extra special needs does have its bonuses. We were chosen recently to join a few families from The Rainbow Trust Childrens Charity to be a part of the olympic torch relay as it came through Lake Windermere....and so we found ourselves (yes, me too) sitting in a canoe in the middle of the lake, with Mr Tim Farron MP No less, lining the route the boat carrying the runner was taking. We had a fabulous time, lots of laughs, some amazing memories, and the best view of the evenings entertainment! Even the weather managed to behave itself just long enough for us to get back to the car.
In addition to this, I am lucky enough to know one of the runners, my lovely friend Megan Fearnley, who volunteered to come to Zaks School with her torch so that the children could all have a photo. As you can see from the pic above, Zak was 'very impressed' hehehe!
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