Two weeks today – 25th October 2011-10-25

Here we are then two weeks today and we will be waiting on Robbie being taken off for his DBS implant... nervous times and the realisation of the surgery has taken its toll on all of us in one way or another throughout this time.

Pressure feels really high on the whole family unit just now, and I believe we are all a bit more reactive, and “short fused” at the moment, however on the positive side we often discuss the op with each other which helps to take the edge off the atmosphere somewhat.

Robbie and I will be heading off for London for his mobility to be reassessed, prior to the implant due to the changes in his ability of late, as mentioned previously in the blog. We leave on 26^th Oct, for his appointment on the 27^th, and then back home to Scotland after his assessment...

We have now received the “official” appointment letter from King’s College Hospital, so other than any unforeseen mitigating circumstances we now have the peace of mind, this will go ahead, this is a huge relief to us all, as the weeks had went by we envisaged further delays due to not actually having a written confirmed appointment, and having to rely that what we had been verbally advised didn’t seem to rubber stamp the op would go ahead (I think in the back of your mind, a written confirmation of the appointment cemented and expelled any doubt there would be last minute hitches, indeed it was like a reassuring “yes” this is going to happen)

Robbie was at the orthotic clinic yesterday getting his new shiny ankle splint, and all seems to be comfy and fitting well, hopefully if the op is a success this may be the last one he requires (Maybe I am being a bit too quick to state such a thought, but deep down I have a really positive feeling about this)

For those of you reading this who may be about to face a similar situation, I feel it is best to explain and talk about the effects of Dystonia from my own perspective, how I feel about Robbie’s situation from a parents perspective... you will probably run through some or all of these thoughts at some stage in this process, hence I wanted to put these down in writing and share with you all... It may help some of you out there... I hope it does...

I have been through an absolute, and frankly horrendous variety of emotional states throughout the process running up to the DBS implant, I have often felt isolated and alone, and asked the fundamental question - 

WHY ? - Why Robbie, why my boy... however over the years and months I believe I have slowly realised, it’s not really so important why this has happened, the cold hard facts are it has happened, and chances are we will probably never know why, I believe the most important thing is making sure we always try to do what is best for Robbie, do what will make his life a bit easier, I may have made some poor choices at any time but we always do what we feel is right for him at any given time.

Fear – Fear of the condition was also a major feeling that has been a major factor of stress throughout this whole situation, you will find fear waiting to pounce out at you behind every corner on this journey. You will worry and be scared on a variety of occasions... you will feel fear when you first visit a consultant, fear of their findings, fear of your child having to give blood (Robbie is petrified of needles still after so many samples being taken), fear of anaesthetics every time an MRI needs done, or PET scan etc, fear of lumbar punctures... As a parent you will say to yourself on every occasion please let it be me, let me take his pain, and take this away from my child.

Future – You naturally stress about your child’s future, I still daily think about this, how will he manage when he is older, starts secondary school, starts life after school, will he cope when we are not around anymore. It sounds silly, but this is something I am sure you will think about and go through on a regular basis.

Isolation – You will at times feel isolated, helpless and alone, and you do feel you are the only one going through these problems, in reality you are not, but you will feel that way... I would suggest (once you have a diagnosis – which can take a very long time) look for groups, charities, local support services etc, these can be a real eye opener, and help you to meet people who have been through similar situations, and this helps you to discuss your concerns, questions etc... Personally I have built a great support network through the above services and often it is good to talk to someone who has already travelled down the path you are currently on... I have many friends to thank for this, and often I will speak to them and ask questions on any area I feel I need to take some advice on... basically there are people out there who can help you get over your feelings of isolation, and social network sites and carer centres are a great place to find these people. I have mentioned one particular source below where you will meet a great group of people who have (and still do) help me immensely... There is a facebook group - The Evelina Childrens Hospital Dystonia Support Group this group has been a major help and source of comfort to me throughout this whole ordeal. Obviously if social networking isn't your thing, the Dystonia Society have an advice line which is available on their website... try these things they may well help

Again, this is only the tip of the iceberg on some of the feelings you will have along the way, and this part of the blog may come across as being somewhat dark and sombre, this was not my intention but I wanted to share some of the key thoughts you will at various stages experience, overall you are not alone, there is help out there, and people who understand your frame of mind at any given time. My e-mail address is available on this blog page if you want to talk about anything feel free to get in touch, add me on Facebook, or feel free to leave a comment and I will respond.... Just remember you are not alone in this, help is there, sometimes you just got to reach out and say “I am struggling... help!”

DBS - 3 Weeks Today 18th Oct

As the time to Robbie's DBS surgery moves ever closer I thought it would be pertinent to discuss our thoughts, feelings and plans...

Thoughts - Again a very mixed bag of emotions are felt daily by the whole family, the DBS now sits very firmly in our minds and never seems to go away, even through moments of distraction the fears and emotions are lurking just below the surface. Even Robbie is talking about the surgery, he is inquisitive, and wants to know when it is, and we often look at the calendar and count down the days... 

I had a very interesting, if somewhat difficult conversation with Robbie the other morning, there we were sitting together in the kitchen having my morning coffee and just chatting day to day chat, we were alone as the rest of the house were either still sleeping, or in the process of waking up, hence it was nice quiet one to one time with Robbie and I, and eventually he got round to talking about the op, again asking about how long it was till the day, and he said to me "I will get the op and I wont have Dystonia anymore eh?, because I don't like having it" It was very tempting as his Dad to say, yes, although I knew this was not the case, and deep inside I knew I could not give him this false hope, so I went on to explain, "No Son you will still have Dystonia, but it will not be as bad, and hopefully you will be able to move about a lot easier, and maybe write a little bit better... if you are really lucky you might be able to stop taking your tablets everyday, and maybe even get rid of your splint"... His reaction was fine, and he seemed happy enough with this, and simply changed the subject, obviously I couldn't let it go so easy, and inner feelings of this conversation have been repeated in my mind daily ever since. I admire how young kids, can just stand up, brush themselves down and move on from a conversation such as this...

Feelings - For some of you reading this who have experienced a child who suffers from Dystonia, you will probably understand what I mean, and somewhat to a lesser extent I am sure those who haven't witnessed such a trauma will probably be able to "put yourselves or thoughts into that persons shoes" I think my main feelings are towards the future, how will Robbie cope with this as he gets older, it is fine just now I can lift Robbie into the car, lift him in the bath, help him with his toileting needs etc, but the question you constantly ask yourself is what happens ten years from now, does a teenager or young adult want help to do these everyday things we take for granted, and the answer I always come to, is probably not. 

It may seem as though I am being a bit pessimistic and assuming the op will not help, but I am a firm believer if you always manage your expectations and don't set your sights too high, then you are likely not to feel so dissapointed if things do not go so well.... 

That said I still have this other vision of a fairy tale ending to all of this, where it all goes really well and Robbie does most things by himself... 

I believe the above pretty much sums up the mixed feelings I have as we move towards DBS... Only time will give us all the answers, and as stated many times previously, regardless of the outcome we will always be there, right by his side.

Plans - Immediate future we have quite a busy schedule ahead, with a new splint being fitted on Mon 24th (He has rapidly outgrew his original one). Off back down to the London (Evelina) on the 26th, for an overnight stay, and he has an appointment on the 27th, to get his mobility reassessed prior to the op...  then home, and back down again on the 7th for admission for his op on the 8th.

The next few weeks are going to be traumatic to say the least, however I still am looking forward to it, at least we will know the procedure has been done, and we will assess the results in due course... there will be closure on this stressful period in all our lives.

Other than the above, we have made advances in relation to Robbie now accepting he needs to get his hair cut really short for the operation, he initially flatly refused to have this done and we envisaged this was going to have to be done by the surgeon on the day, however with a bit of persuasion from Mum (after her getting him a huge collection of Beanie hats for after the op) he seems to have accepted it more, further to this a family friend who is a hairdresser has agreed to give him a short cut at the end of this week (to get him accustomed to the style) and then a further really short cut before we head off down for the op in Nov... 

We are also on the final week of the October holidays and the weather hasn't been great at all, so we have been a bit housebound and Robbie is really looking forward to getting back to school next week, getting back to playing with his friends... We have discovered a new skill though, making chocolate crispies !!!! Robbie and his sister Chloe regularly do this with Gran Ovenstone, however we had a crack at this at home last week with outstanding results, so good we made them twice... Not quite at the making scones or pancakes stage yet, but we will get there!

The cooking/creating cakes thing seems to be something Robbie really enjoys, who knows perhaps we have a budding Gordon Ramsay in the making here!!!

4 Weeks 4 Days - 6th October 2011

The time is eventually passing, and it seems to have dragged in, but the light at the end of the tunnel is becoming more visible with each passing day, and Robbie's DBS is firmly in our sights now, and we await the 8th November with many varied and mixed emotions...

Robbie seems to have come to terms with using his chair at all times when in school, and has also now accepted he needs to use the disabled toilet whilst at school, seems his initial resentment to all these changes have subsided and he now accepts this without a fight. The fact there is a support teacher with Robbie throughout his full day also helps to relax our fears for him when he is at school. He still is reluctant to stay at school for dinners, but a Monday and a Wednesday are his regular days for staying for lunch, and he comes home for lunch the rest of the week. The 2.30pm school finishes seems to make Robbie happy also, he seems less tired when he gets home...

Still waiting on delivery of Robbie's new splint, but to be fair they did advise 3-4 weeks, so there is no issue there... hopefully the DBS may help us lose the splint all together... only time will tell.

The team at the Evelina got back in touch in relation to doing a further review with Robbie to repeat mobility base lines, and possibly upper limb functions. This is due to his recent decline in mobility and stability... this decline seems to have slowed now thank goodness but his mobility and stability are much worse than they were in July when he was originally assessed. So we are off down to the London on the 26th, with a morning appointment on the 27th Oct... then home again...

I also managed to complete my first ever 10k race in an attempt to raise some funds for the Dystonia society. I ran the BUPA great run in Edinburgh on the 2nd Oct, in an amazing time of 1hr 8m, not bad for a 46 year old smoker (The ciggies need to stop they are slowing me down!!!) Think it would probably be best to get Robbie's implant out of the way before I attempt that challenge though, I dare say that is going to be one of the longest days of our lives...
It was a really good feeling to achieve this after 46 years of life, it made me feel so proud inside, and you certainly get a sense of achievement, think running has become my new friend and I will definitely take part in future organised mass run events, the atmosphere was amazing, everybody helping each other on all the way... It was great : )
Robbie and co pictured below proudly displaying his race medal...

The run up to surgery is a real emotional rollercoaster, and your thoughts and feelings about the op change several times throughout the day, one thing we are convinced of though, we need to go ahead and give Robbie this chance... regardless of the outcome, he will always be our little lad, and we love him to bits, nobody or nothing can take that away from us... He brings happiness and sunshine into all our lives xxx