The Foot Saga Continued.

Hayden dislikes any intervention when it comes to his health and well being.

So this is what it looks like when you weight for an xray.

 Scared still.  Not wanting to go in the room.  Three nurses and me to get the xray.

Than after another long wait,  sedation,  he finally had a back plaster and padding to be worn another 3 days before  it all would be finally be removed. 

So Hayden, recovering from sedation and the nausea again feeling sorry for himself.

Hospital visits are such a trauma for him.

Wordless Wednesday 18 June

I am out of hospital after Hayden's toes is fixed.  See my blog post here

So here is what it all looks like on the other side of surgery.

Tape on the toes to stop him touching his big toe.

The plastic on this afternoon so he could go outside and play.






































I am linking this post to My Little Drummer Boys.

The Toe

Hayden has a bent toe.  It has gradually been bending.  We know for sure it is not rickets, something that people with cystinosis can sometimes get.  In fact we have no idea why this has happened as it is something that the elderly usually need medical intervention for.

So with his toe so bent  and pressing into the toes beside it surgery is necessary so it can be pinned.

Fingers crossed Hayden adjusts to the cast on his foot quickly.

Our Fabulous Neighbour.

The lovely Faye live just 5 minutes down the road.  She is the very young age of 70 and lives alone with her many animals including Lucky...her rescue dog.

Hayden  has taken a liking to visiting Faye and her dog.  She has taken a liking to Hayden visiting. 

So this is what a visit to Fayes house looks like.

Hayden walking Lucky around Faye's yard.

 Showing lots of love.

Great friends.

Lucky was a very anxious dog when he was rescued.  Now he hears Hayden coming up the road and barks with excitement at his pending visit.

We are not in a position to care for a dog. You really need the time to dedicate to one.  Something we don't have much of.

So thank you to Faye.  Hayden has these photos hanging on the wall in his room.  He can't wait to show us these photos most days.

Just how tidy is tidy?

After the usual two hour morning breakfast and medciation routine Hayden has made an incredible mess.  Lego, teddies, pens/ pencils, water bottles and cups.....you know the sort of list that comes with Hayden a child like Hayden in the house.

So at the end of our routine, when the behaviour management medication has kicked in, Hayden somewhat compliantly packs up....  some mornings. The brain injury he has as manifested in behaviour, that when unmedicated is extreme.  Some mornings we can spend a good 10 minutes picking up every piece of Lego, every pen, book and anything else within reach, from around the family room.  The photo below is on a good morning and still only some of the stuff spread around the room.

So you can imagine just how happy I am when I get this result called tidy by Hayden just as he puts his shoes on to catch the taxi to his special school.

Yes everything might not be away or even away just the how I like it.  But it is sure better than having to spend the ten minutes gathering everything up the way it usually happens.

Wordless Wednesday 12 March

Just one more photo from when Hayden was in hospital.

 

Just another check which Hayden does not like.

I am linking this post to My Little Drummer Boys.

Distressed....You just never get used to it.

It has got to the point in Hayden's life when he fears intervention.  In fact it could be said every time we step inside the hospital he is distressed to the point that it looks like I might not even be able to get him inside the hospital.

It is hard as his parent to get used to his distress.  The only thing that keep me ok from freaking out about it, is that I know that any intervention at this stage is good for him.  Helps to keep his life stable and even happy.

So when I came across a photo I took when Hayden was recovering from his recent port a cath replacement surgery it really reminded me of how he feels when he really does not understand what is going on.

Fingers crossed that these feelings of distress will slowly disappear.  That he will no longer fear the proceedures.


Just take a look so you can appreciate just how he feels.

(credits  Inner Self by Nutkin Tailz found here}

Another surgery.

 

Today is the day when I am taking Hayden into hospital for one of two surgeries we know he will have in the first 5 months of this year.  He is very nervous petrified of going into an operating room.  I know that I would not put him through this if it was not necessary. 

In fact he is nervous just going to see the Dental Nurse.  So you can imagine what he is feeling when he sees an operating theatre.

As for me I feel somewhat sad every time Hayden undergoes intervention. Only because I know it is hard on him but necessary.

 I really wish that this was not what Hayden life had come too.

There are those that give of their time.....

It is amazing in the disability sector how there are people who freely give up their time to do something that makes others smile. 

Just that happened in early December for us.  The opportunity to get a professional photographer give up some time to take photographs of children who go to Wilson Home for respite care.

Hayden loves going there for a 'holiday' and the staff love having him stay.

Of course Hayden is incredibly difficult to persuade to sit still and have a photo taken at the best of times so we happily took up the offer, not having any expectation for a photographic outcome.

Well today I got some photos and I love them.  They are not perfect but they capture Hayden as he is expressions, Barney and all.

Take a look.

First the Hayden smiling photo.  I am sure this would have taken ages to get.

Then there is this 'what are you doing?' photo. 

and finally, my personal favourite the 'I won't do what you want me to' photo with Barney his favourite.

 

So to the photographer that I don't know.  Thank you for giving up you time to photography Hayden.  Thank you for being patient enough to capture all those everyday emotions that we see everyday.  I love the photos.

Carers Fatigue

Carers fatigue is something that really catches up with those of us who care full time for the disabled, at some time or another.  For me at the end of the school term when I am really tired and have been run off my feet. My husbands job makes this more challenging because it takes him away from home overseas, frequently. 

Now don't feel sorry for me.  That is not what I intend you to feel. 

How do I recognise what is happening to me when I have a complete melt down, carers fatigue.    As I sit here and think about these events I acknowledge that they are triggered by a number of things; exhaustion, no time to take time to do something for me, an immense feeling of isolation,  I over eat and grumpy.  I know this list anyone could feel one or more of them.  But when I get to the point of carers fatigue I feel all of these at once. 

While I don't seem to be able to prevent these moments I am trying to do a number of things to help manage them.

• I have a part time job.  Essential for me, giving me time out of the home environment that causes the melt down moments.
• I try and exercise.  This one is not always easy so I am trying to come up with a plan for exercise at home in the evening when I am alone with the children and have been working.
• A more extensive list of baby sitters so my husband and I can go out every now and again.
• I am working at getting more residential respite care.  Not sure how successful this will be but it is worth having a go.
• Finally I do art journalling.  This year I was looking at happiness as my focus for this hobby.  So take a look at Octobers pages I have done.  I am going to get them all printed into a book so I can refer to them when I need to.

The credits for these pages can be found here at my Scrapbook Graphics gallery

If you are a carer of someone full time what do you do to look after yourself?

What Happened at School Today?

Hayden arrived home from his special school looking like this......

Since he is not good at communicating and his home communication book did not offer any ideas we are stuck.  What exactly did Hayden do at school today.

A Hospital Visit or Two

This year has been full of hospital visits.  Usually one day stays but one for longer.  Hayden has been in hospital to try and clear his port a cath 2 time.  Both with short lived success ending up with facing the reality that he would need surgery to replace it.

 

(Starship hospital Auckland from the atrium inside)

 

Starship is the place he usually is admitted to but not always. A day might be anything from keeping Hayden still in one spot while hooked up to a pump putting fluid into his port to clear it.  Or it might mean surgery, in and out in one day.  Maybe a three night stay in hospital with campylobactor.  Yes you read that here.  My son who is mainly feed through his mickey button got food poisoning.  Don't ask me how because he was treated as the primary source.  Hmmm

Anyway this is what hospital can look like for us.

Firstly there is the temper tantrum and feeling sorry for himself.

Art and craft make and do while waiting.  A holiday programme put on in the atrium.  

Spending time to try and unblock the port a cath.

Then there is the reality of being sick.  With Hayden's medical condition being sick is means being hooked up to plenty of IV fluids.  Usually no food and .....

......plenty of blood tests.  Finger prick variety this time as his port was yet to be fixed and he was hooked up to a lure in his foot.

Just maybe there is the ward wall art which has been donated in the specialties ward refurbishment that I got to enjoy while Hayden was feeling sorry for himself and sleeping while sick in bed.

 

Finally, for those who can enjoy, there is the lovely Auckland skyline that can been see from the 6th level.

 

Wordless Wednesday 25 September

It has been quite some time since I posted and there have been many photos taken.

(taken on my smartphone)

I am linking this post to My Little Drummer Boys

A day in Daystay at Starship Hospital

Hayden has been in hospital today for a renal function test.  I had a lot of time to fill while he was waiting for the different blood tests he had to have over the course of 5 hours.  That does not include the hour before it all started that was needed to get his port a cath accessed so we had a point to draw the blood from.

So this is how our time looked like today.

First step is the port a cath which needs to be put it.  I does not hurt as all the nerves have been quarterised.

Starship hospital from the inside and the playground in the foreground which filled in some of the time.  I got time to admire the paint job from the Atrium.

Of course no stay in hospital is complete without stickers and some paper.

Luckily there was a holiday programme free to attend.  So Hayden made a flying fish kite and did some colouring in .

There of course was the cutting and gluing but I forgot to take a photo of that and the long walks too and from one side of the hospital to other to kill some time.

It sure is not a test to be repeated as it makes for a very long day.

When enough is enough.

Most people do not realise how difficult our lives became when my son became disabled.  Back in February 2006 when Hayden became disabled one of the many things he was left with upon recovery were significant behavioural issues.  We lived with these behaviours initially hoping that they would recover and they would moderate over time.  Unfortunately this did not happen and in fact the behaviours have become harder to deal with as he has got older and stronger.

Now for our own sanity Hayden is medicated for his behaviours but the challenge we have been trying to overcome has always been that he does not swallow medication.  Especially tablets.  Everything has to go through his peg.

Last week I was told that Hayden's behaviour is at the extreme end of things and that the consultant we see has never seen behaviour like it.  He has concluded that Hayden needs to be referred on.  Also that Haydens behaviour is like one of a kind certainly in his experience and finally that Hayden should have it noted that his behaviour is his most significant disability, even more significant than the rigors of cystinosis.

Phew..... we live with this behaviour everyday and most significantly the unmedicated times of before school and after school.  It is exhausting and stressful.  Last week when we were at the appointment I was unwell so was at a low point.  So it sure felt good to hear that his behaviour has been put in perspective and it is not just me the parent and professionally the teacher over exaggerating things.

Fingers crossed that something more can be done for use before we can no longer cope with everything he throws at us.

So while I have written a lot of doom and gloom there are a few moments of spontaneous fun....alright this is when he is medicated.....

 

(credits....kit is Berry Delight by Caroline B at Nuts4Digi)

When you don't/ can't eat enough food.

Have you ever wondered what it looks like when you can't/ won't eat enough food?  Well here is what approximately 3 months of food for my son who is not hungry enough to eat (due to consuming about 4 litres of water each 24 hours.

 Ok so there is some on the back seat of our little car too.  It is all liquid and all delivered through his mickey button as he refuses to drink it.  I know hard to believe he wont drink it when his is always so thirsty. But for him it is water or milk and that is it.  No point forcing it as he will just vomit is back up.  To be fair the brown boxes hold the food that is delivered over night as there are not enough house in the daytime. 

Hmmmm. 

I wonder how all this will change when his kidneys finally fail?

Sometimes when enough is enough

As I sit here tonight I feel like I have been dragged through today backwards by one disabled child.  You will know if you read my blog that I love him to bits.  Unfortunately he has bought big low points to our lives which have caused our lives to change forever.

Personally I don't know what is harder.  A high medical need, being cognitively impaired or significant behavioural issues.  In our house all are challenging disabilities to deal with in their own right but together they are really difficult to deal with a lot of the time.

At these times I sit and wonder just how much longer we can manage all of these issues.  I wonder what can be done to help us out some more because what will happen when we get to the point of not coping due to his ever increasing strength and aggression,  the never ending medication routine, the forever broken sleep and even the sadness that I have because my other children have to put up with this and they had to do things that they never should have to do and the way that this impacts on my Husband and I.  

I don't want people to feel sorry for us.  I just need people around me to support us.  I need help when I need it, not just when some outside person thinks I need need it.  I need the help for the reasons I need it and not to be put into a pigeon hole along with others who have no idea what it is like to like with this rare medical condition topped up by the other things going on.  Don't get me wrong, I have the support of a fabulous family but I need something more. 

 Well enough of my rant.  Fingers crossed that things get better and people start listening more to me.

 

When does being Disabled Officially mean Disabled?

 

Today I had the uneviable task of providing evidence to the necessary government department that my son is still disabled.  Yes you read that right....still disabled.  I have to say when I first read the letter asking me to do this I was somewhat perplexed.  In fact I sat there asking myself if this was something that parents of children would lie about? 

So then what does New Zealand determine a disabled? Hmmm according to the State Services Commision it is

 
" Statistics NZ defines disability as "any self-perceived limitation in activity resulting from a long-term condition or health problem; lasting longer or expected to last longer than six months or more and not completely eliminated by an assistive device".² Statistics NZ also draws on the World Health Organisation's functional definition of disability of "...any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner of within the range considered normal for a human being".^3'"

I am postitive that someone with high medcial needs, significant cognative and behavioural needs is disabled.  In fact any one of these issues my son has would make him disabled on its own. Anyway I went down to the local government depart that required this of me and asked why yet again do I need to prove to them that my son is as he is.  Rules she said.  I think really it is an unnecessary and insensitive process that is treating my family like we are untrustworthy people.  Not pleasant at all.

Grrrrrrr

Ok now I feel a little better

(PS my son is not in a wheelchair, nor have any other notable diablitly to look at)

Happy Birthday to my new 10 year old.

Last week I was busy making a cake to decorate for Haydens birthday.

It was nearly 7 years ago that changed his and our lifes forever and Hayden became the person he is today.  A miracle in may ways.

So in the annual tradition I made a special birthday cake and took it into school for him to celebrate and then we have a party at home with the leftover cake and do the other party things that he loves to do.

So heres to a party filled with lots of wrapping paper and candles to blow out.  Hayden is only interestd in blowing the candles out as he does not eat cake.

 

 

A photo of the cake will be in the this weeks wordless wednesday.

 

Don't let it ever be said........

I am forever hearing and reading that people say that having a disabled child in your house.  While I do not doubt that for some or even many this is true at the moment they make that statement.  Unfortunately I don't necessarily agree. 

Of course there are times when my son Hayden brings laughter into our lives but sadly it has to be said that he and everything that comes with him, is quite some burden right now and for the rest of his life.  I know that burden is a very strong word to use but to us living this life that is what it feels like.  Hayden will for the rest of his life have to live with us.  He will be reliant on us to keep him out of hospital and alive on a daily basis. His 6 hourly medication, constant need to be hydrated, eye drop 5 times a day and two hour breakfast routine, his constant behavioural issues (he is severely ADHD), the interrupted sleep I get and of course the many hospital appointments and hospital stays.  Then keeping his medication supply in stock, filling in the constant paper work and ....well the list just keeps on.

Naturally we do this because we are Haydens parents and we love him.  Then there are times that we think about what might have been and why us?  But don't judge us for this.  You should try leading a busy everyday style of life with two busy children.  Then add a disabled child like Hayden who is like having a very needy whirlwind in your house every day and you might just have the smallest glympse of what it is like. 

Within all of this I know the health system of New Zealand does a good job by Hayden.  Sadly family, in my opinion, are the forgotten link in it all.  I don't think any one health organisation has stopped to enquire how my family and I are, are we stressed, how we cope, how my other children are coping.  No one sits there and really understands Hayden and consequently what that means to our lives.  There is very little respite and certainly very little spontaneous activity in our lives. We can't just spend the day relaxing or sleep in.  I could go on but I think you get the picture.