Day 5 of 5 - Psychological Assessments and meeting the Surgeon - 29th July

Another busy day ahead, and to kick off proceedings on the final day we were to meet with Tamsin the Paediatric Clinical Psychologist.

Her task was to take Robbie through a series of assessments looking at psychological aspects of Robbies cognitive development, this included a series of tests looking at memory, mental planning, which included things like  memory games, reading and describing pictures, knowing the similarities between things (like milk and water for example) matching pictures, puzzle/task solving, identifying missing parts from pictures, facial recognition etc etc etc. However once again in the unique style of all Robbie’s assessments this week they were done in the manner of a fun thing for the child  to do, and again Robbie seemed to enjoy doing these assessments, as always breaks etc were taken as and when Robbie required them.

Then it was back to doing the 6 minute walk test as was done a few days earlier this time without the aid of Robbie’s orthotic splint.

Next up Kylee and Lesley both did a few finishing off tests which hadn’t quite been completed on the previous couple of days, again this demonstrates the team at no time pushed Robbie too hard and the childs comfort was foremost in the whole teams mind.

In the afternoon we were to meet up with the surgeon who would be performing the procedure, Mr Richard Selway (Consultant Functional Neurosurgeon) when we met I knew I had seen the face before and it turned out I had indeed seen the surgeon in a conference regarding DBS which the Dystonia society had gave us, in which he had been one of the speakers. He is a very approachable person, as are all the team at the Evelina, and no questions we had were unanswered and we were very comfortable to ask what we liked in front of this team, overall the team that are going to do Robbie’s DBS have all really gave us confidence in the procedure, and both Jane and I are very keen for this to happen as soon as possible.

One of the really postive things about the week was all of the professionals we had dealt with gave feedback on the initial findings of their assessments at the time, so it wasn’t the case Robbie was tested and we got no feedback, the team shared their findings almost immediately, which was a real change from standard medical practices I have dealt with elsewhere, albeit some of the news (which rather surprisingly we hadn’t realised or aware of) certainly hit home, never the less it was really good to be made to feel so involved, and the feedback was given in very easy to understand terms without the use of  medical jargon thus we could fully comprehend their finings. 

Personally I believe the thing I have learnt most from the week is the effect Dystonia has on other functions of the body, and how it can help to hinder the planning process in the brain for everyday tasks most people take for granted, the fact that Robbie struggles to co-ordinate both his right and left hands together, and the process behind why Robbie finds it so difficult to stand still with feet together. The reasons why he sometimes struggles to get words out, and possibly the reasons why he struggles to understand what is being asked of him, leading to frustration on all sides, and it has taught us Dystonia is not a stand alone condition and many “other” problem areas can be caused by the condition. 

We look forward to getting the implant done, with a view to therapists, teachers and ourselves then working with Robbie and addressing any further help he may requires to get his use of language, understanding and motor skills back to a reasonable level… one day at a time…

On reflection of the week that was, my personal highlight was not only having the privilege of meeting and working with this team of absolutely dedicated professionals, but also meeting the young lady who had already had DBS, she was truly inspirational to us, what an amazing story she had to tell and I believe this was because we could so closely relate this to Robbie, albeit her dystonia was more severe than Robbie by the time she had her op, and hopefully a few weeks, months and even years down the line I would like to think that we as parents could help others, or better still Robbie will be able to tell his story and help others.

Finally we headed away from the Evelina, however are looking forward to the day we travel back for the surgery, whilst daunting and a bit stressful, I am now fully confident we are making the right choice for Robbie in going ahead with the implant, whilst his condition will never be cured, it will certainly be much more manageable, and his quality of life will improve.

In fairness as we expected it was an absolute rollercoaster of emotions ranging from really ecstatic to slightly devastated at times, however I suppose this is what “life” really is, and you got to get through some real lows, to really be able to embrace the highs, first and foremost though we have left the Evelina even more optimistic than when we arrived.

I really cannot recommend this team enough to you, if you need the help with any complex motor disorders, I am sure I have been fortunate enough to be seen by probably the best team of medical therapists and professionals in the world in their chosen field, Evelina and it’s staff I thank you from the bottom of my heart.

Back to Sheffield tonight to stay at Les and Sonia’s (thanks guys for letting us use this as a half way house) then home to sunny Scotland in the morning, Robbie has requested his favourite dinner this evening, so off to the Chinese for us, then back to my wonderful couch (Oh I so missed this)

Day 4 of 5 - Multiple Assessments - 28th July

Wow what a hectic day today was, probably the most intense thus far for both Robbie and ourselves…

At the outset of the day we spent time with Hortensia and Wioleta, they put Robbie through a variety of individual tests looking at stability, balance, writing, colouring, many of the tasks were quite difficult and Robbie struggled with a few, what became very apparent very quickly is the fact his dystonic movements caused him more and more issues the more complex the task given. It was eye opening that the team seemed to know exactly what types of things Robbie had difficulties with, I suppose this is one of the reasons they are experts in their chosen fields.

After a couple of hours there was a further session of speech assessments with Lesley Baker the speech therapist, this wasn’t to be his last assessment with Lesley and a further session took place late afternoon whilst a goal setting session would be held with Jane and I. Lesley’s lunchtime session involved a flipbook with various pictures, and Robbie was asked to describe what was happening in the pictures, the main focus of this session seemed to be geared towards words and word structure.

Next Hortensia and Wioleta wanted to see and film Robbie having his lunch, Hortensia wanted to see Robbie eating using a knife and fork, to be fair this is not something Robbie usually does as he prefers to use a spoon or finger foods. Part of this discussion touched on Robbie being a fussy eater, and how it had crossed my mind on several occasions part of the reason for this may well be down to him liking foods that were easy to eat and swallow, along with easy to eat with fingers ?

There was then a short half hour break for lunch…

In the early afternoon Hortensia wanted to look at the dressing and self care side of Robbie’s dystonia and we had been asked to take a change of clothes for him to attempt dressing and undressing himself, here it got quite difficult as naturally as a parent you immediately go to help your child when they struggle, however Hortensia had given us clear warning not to help as she need to see how Robbie problem solved, after putting a change of clothes in a drawer (to give a realistic feel as possible to the exercise) she asked him to take his clothes off and get changed. Robbie just looked and I prompted him “take your shoes off first” then Hortensia simply stated “No Help”… at this Robbie became quite timid, and we asked if it would be better if we left the room and off we toddled - Once we were away he managed to do the change to the best of his ability, then he was given the chance to pour cereals and milk by himself, again we were not in the room when this happened but it went okay.

Then off Robbie went to meet up with Kylee Tustin (Clinical specialist paediatric physiotherapist) again he was with her for an hour or two and this assessment covered amongst other things, sitting, sit-ups and press ups . Kylee went on to explain she used a scoring system similar to what is used with kids with cerebral palsy, as again this gave a benchmark to compare Robbie at 3, 6, 9, and 12 months post op, this would also be used for ongoing assessments over years.

Whilst Robbie was going through his paces with Kylee, we got to meet Dr Margaret Kaminski (Clinical Fellow in Motor Complex Disorders), she ran us through the full procedure for the DBS surgery, again we saw examples of the implants, battery systems, charger systems, along with a complete run down of the procedure, what would happen, how long it would take, what to expect, post op care and follow ups.

We were then spoken to by both Hortensia and Kylee, in relation to goal setting, we all discussed there findings from the assessments and discussed the areas Robbie has difficulty with, we decided on 7 or 8 key areas we saw as everyday issues, and discussed and recorded these in detail. Then my wife and I were asked to score how on a scale of 1 - 10 on how much each problem area we had discussed affected Robbie and ourselves… 

I will refer back to these goals later in the blog sometime.

I think the grey cloud of the day would be when we were asked about when we expected the surgery to happen we were advised 23rd August in our June visit, however they did have to break the news that it would not be this date it will happen, an exact date hasn’t been confirmed as yet, so hopefully we will try and get an answer from the surgeon on this tomorrow, this said we fully understand as the op is done at King’s College Hospital with after care at the Evelina this is quite an exhaustive admin task to ensure all departments can accommodate the procedure at the same time it isn’t the end of the world… So it could still be late August, or as late as mid November, regardless we are both confident this is the way to go…

Eventually we left the hospital about 5.30pm, then walked for miles to try and absorb all the information and excitement of the day… 

It was a really, really busy day… we walked to Buckingham Palace to show Robbie where the Queen lives, and then went off for a McDonalds, now home… thank goodness !!!

Day 3 of 5 - MRI and Therapy Assessments - 27th July

Here we are then 3rd day done, and what a tiring week it has been if I am honest, the stress of being away from home in a strange place is beginning to take its toll, and the thought of being home on my own couch just feels so appealing right now, typical I guess you don’t really appreciate the creature comforts in life until suddenly they become unavailable to you.

Today’s agenda was an assessment with the occupational therapist Hortensia Gimeno (Clinical specialist Paediatric Occupational Therapist), and Wioleta Kowalski (Therapy Assistant)

The session today involved Robbie writing his name, copying a sentence written before him, and writing his age down, along with a timed alphabet writing exercise. After this Robbie was put through various exercises including drawing shapes, copy shapes, join lines (dot to dots), reading and writing timed exercises, throughout the tests Robbie was filmed in order to record his current ability, this will act as a benchmark for future post op stimulator tuning and assessments.

After the handwritten work, Robbie was given some physical assessment, and was timed walking a distance, turning around and sitting down, then up again, turn around walk back and sit again a few times. Robbie was also put through a 6 minute walk test, where he was taken to a quiet corridor, and two cones were placed 30 meters apart, and Robbie simply had to walk back and forward between the cones for the 6 minutes whilst being filmed, from the front, side and back.

As Robbie still had a cannula in his arm from yesterdays PET scan, and they didn’t want to remove this as Robbie had an MRI scheduled for the afternoon today Hortentia couldn’t do all of the tests today, she will pick up these outstanding assessments in the morning.

We had a really good experience today where we got to meet a young lady who suffers from Dystonia, I will not name her for obvious reasons, she told us how she experienced difficulties with movement from the age of 3, and spent years travelling back and forward to several hospitals before eventually being referred to Dr Lin. She explained how the symptoms had first affected her, and how they had progressed over the years, and to be honest her case sounded very, very similar to what Robbie is going through. She explained she had underwent the DBS implant in Feb 2010, and how it had made a major transformation to her life, and really helped her symptoms. We got the chance to discuss several questions we had in relation to the procedure with someone who has actually experienced it, we could ask about was it painful, what after effects were there, has it helped make her life better, how often the battery needs charged, how she felt about the implant etc etc etc… It was truly an amazing experience, she was a truly wonderful person for agreeing to talk to us and it helped us immensely. She even explained about how she can now bring her sister to follow up appointments, rather than take her parents that way they can go shopping… Seeing someone in the flesh who has had the op makes the world of difference. To this young lady I would like to say a million thanks, this real example has made the choice much easier to make for our Robbie, she was a real inspiration to my Wife and I.

Early afternoon Robbie went off for his MRI, again similar to yesterday he was very drowsy when he first came round from this, however quickly came around again, he is being released from the ward tonight to spend the night at Gassiot House, so the hard bit is now finally over for the time being with the last two days looking at further therapy (Physio and Phsycological) assessments, and a goal setting exercise tomorrow afternoon. Friday is looking at further assessments and a meeting with the Surgeon who will perform the operation...

Hospital 5 Day Assessments - Day 2 - Speech and PET Scan - 26th July

Robbie stayed in the Evelina overnight as he had a PET scan scheduled for after lunchtime today, Jane stayed with Robbie, and was woke at 0545hrs to give Robbie some breakfast, before his fasting started at 0600hrs.

First on the agenda today was a speech therapy assessment led by Lesley Baker, (Snr paediatric speech and language therapist)

Recordings are taken throughout the assessment and pretty much fell into three different sections, the first part of the assessment Lesley showed Robbie a set of flash cards with different images of different situations and was asked to describe what was happening in the picture, the second stage of the assessment was led by Lesley who showed Robbie a book of pictures, and told a story to go with the pictures, Robbie was then asked to try and tell the story back to Lesley, using the pictures associated with the story as a reminder of the story line… he managed this rather well.

The third part of the assessment involved Lesley reading out 50 words to Robbie and him being asked to repeat the words back. Lesley went on to explain these speech and voice results will be transcribed and analysed  and these would be used as a benchmark for future appointments and programming sessions post op.

In the early afternoon it was down to the imaging department for Robbie’s PET scan, this does involve a general anaesthetic and thankfully Mum decided to go with Robbie to ensure all was okay until they got a needle in to administer the drugs required to send him off to sleep. The PET scan (positron emission tomography) takes three dimensional images of the body, in Robbie’s case brain, I believe the main difference between these scan types against say MRI scans is they show actual tissue, and vital to the correct placement of the stimulator during surgery.

Robbie seemed very tired and a bit “spaced out” after the scan, as you would expect after anasthetic, however very quickly recovered and was back to his mischievous self.

MRI scan to follow tomorrow afternoon, with therapy assessments on the agenda for the morning, again this will be a 0600hrs fasting, so up again at 0545 for a bit of breakfast.

Hospital 5 Day Assessments - Day 2 - Dad 5am - 26th July

Sitting awake since 4.30am, drinking a coffee gives you some real time to ponder on our journey with Dystonia so far… Here we are in the middle of London, going through the tests for DBS and some serious questions keep running through your mind.

The family are great with Robbie, they all get along really well, we manage to live okay and get through our days without many issues, and the question in the back of your head is always there… Does he really need this implant, can we not just manage as we currently are doing?

I know the answer deep down is probably no, if there is a reasonable chance this surgery will improve Robbie’s quality of life in any way, shape or form we simply would not deny him this opportunity.

I long to be able to see Robbie get some more mobility and stability back, he is a normal 6 year old who wants to be able to do the simple things in life that most 6 year olds can do, ride a bike, go to swimming lessons, play in the park, climb up on climbing frames, button up his jacket when he is cold, tie his own shoelaces. As you can see I am not looking for miracles just small things that will give him more independence and allow him to do his own thing when and as he wants without someone always being there ready to pick him up when he stumbles.

This truly is a cruel condition, and it can be incredibly painful to watch as a parent, however the implant can and deep down I am quite sure will make this better.

I think the tone of this entry is quite dark and sombre this morning, and it is not intended to be so, I am simply trying to paint a vision of the turmoil my mind is in just now. I believe I am probably feeling this way as I know Robbie has his PET scan today, which requires a general anaesthetic, not the first he has had, and it certainly will not be the last, but as any parent who has witnessed their child being anaesthetised will appreciate it is a traumatic experience, to see your child slip into unconsciousness before your eyes, and although in this modern age problems with anaesthetics is pretty much unheard of, it is still a true and valid worry for any parent going through this procedure.

Thoughts of home and normality are pushed to the back of my mind just now, the everyday things like the house, the garden, bills etc etc etc don’t even get a second thought at this time, (where before these things used to seem so important) now I realise they are minor things, that will wait as this time is about doing the right thing for Robbie.

Where this journey will led us, nobody knows, but I am confident we are doing the right thing for Robbie, I am optimistic about the implant and overall I am certain regardless of the outcome of the Op I will always have a loving, caring family, all of whom mean the world to me, and make me very proud.

Hospital 5 Day Assessments - Day 1 - 25th July

After a good rest at Gassiot House, Robbie is ready to start off on day 1 of 5 days of assessments, day 1 we need to attend King’s College Hospital, currently about 3.5 miles away from where we currently are based at the Evelina Childens Hospital. Instead of facing the London traffic on a Monday morning, we felt it best to take a cab to this hospital, our first appointment was 1pm, for a Upper and lower limb SSEP, which in layman terms like mine basically meant their were electronic pads attached to various areas on his arms, legs, head and feet, and small electrical pulses are passed through the muscles in his body, I believe this is to establish how the muscles are sending signals.

This test took approximately one and a half hours by the time the sensors had been placed, tests followed and results recorded. One of the main issues during this procedure was the medic conducting the tests did mention he kept moving his arms, as anyone with Dystonia or who has experienced Dystonia may be aware it is very difficult to control movement, as these can be involuntary, however the test was eventually completed. This seemed to drain Robbie a bit, and he was visibly tired during the procedure, however remained patient and eventually the tests were completed.

Other than this limb measurements and sizes were taken.

The second part of the investigation was a procedure called Magstm, this involved wearing a cap like contraption, with electrodes, a mild charge is then put through the body and tests if the central nervous system is okay, this can establish if an implant can be made without causing problems, this took about a further 30 mins or so.

So 3 hours in and we were all done, Mum had sat with Robbie through all these procedures, then it was a trek across London back to the Evelina, Robbie was to stay in the Evelina tonight and has speech assesments in the morning and a PET scan scheduled for the afternoon tomorrow, again Mum is staying in with Robbie this evening whilst I took Rhys and Chloe back to Gassiot House for the evening.

Early night as we will all be over to see Robbbie for 8am tomorrow, my guess is he will fall asleep early tonight as he did look tired after his tests today, not sure if he found these physically draining, or merely down to the time they took to complete, I tend to think the latter.

Tiredness aside, Robbie actually loved the remote controlled bed in the Evelina as the picture above shows, I guess this may well keep him entertained for several hours over the next few days.

Trip to Gassiot House from Sheffield - 24th July

We set off about 10,30am from Sheffield eventually on our way to the Evelina, all those weeks of waiting were nearly over and we were now setting out to meet the complex motor disorder team for our second visit, only the drive to London remained between us and our goal.

This was the part of the journey I had been secretly dreading the most, the thought of driving round central London had caused me rather a few restless thoughts over the last month or two, and the thought of driving through the metropolis was rather daunting to me.

We set off from Sheffield and to be fair it was pretty much motorway all the way into the centre of London, so no major worries there other than the regular mandatory “pee” stops so often demanded by the kids.

The M25 around the outskirts of the city was very driveable, much busier than traffic I am used to but none the less not too stressful at all, my trusty satnav had complete control where we were going and it did a sterling job, and guided us all the way to the doors of the Evelina without issue…. Seems those restless nights had been in vain, and indeed getting here is not nearly as difficult as I had envisaged.

We pulled in to find all the disabled spaces (of which there are only a few) had been taken, and then right at the end of the row, I spied a random moped parked in one of the bays, could this be possible I thought, a moped with a blue badge.. My guess was no, and in rather a cheeky fashion I just took it off it’s stand and moved it in just a tad (well enough to let me squeeze my car in !!!) To be honest when we went back to the car to unload it, another space had become available so I moved the car into this space.

No harm was done, and I had a parking space… result !!! We toddled off to the reception desk at the main hospital and picked up the keys for our accommodation… we got the keys without issue, 1 key so I guessed it was for a family room, and we went to go and stick the kettle on and check out the digs before unloading the car, now remember there are 5 of us in total, My wife, 3 kids and I, and when we went into our room we realised there was a bit of an issue, 5 people and two single beds. I thought no problem I would speak to the guard we had picked up the keys from and advise we were supposed to get a family room, however  when I spoke to him he advised Gassiot House was managed independent from the hospital and we would need to speak to them when they opened on Monday morning. Guess we will just have to make do till then, the wife came up with the idea of pushing the two beds together and us all sleeping longways across the beds… sounds strange I know but it does work. The main thing is we are all safe and well, that’s good enough for us.

We went along for a walk this evening, around the houses of parliament, Westminster Abbey etc before we went off for something to eat…. Been a really good day, all are well and now it was time to head off to our nice cosy bed.

Due at Kings College Hospital  tomorrow to start off Robbie’s 5 day assessment, updates to follow soon... 

Trip to Sheffield en-route to London - 22nd July 2011

In order to make the trip that lay ahead as comfortable as possible, we decided it would be in everybody’s best interest if we set off in advance on the Friday and stayed at my Wife’s Brother’s in Sheffield. Having first read Robbe’s schedule for his appointments it had become apparent the appointment at King’s College Hospital was actually for the 25^th and not the 23^rd as I had first thought !!!! Ths wasn’t a major issue we would simply still head off to Sheffield and stay both Friday and Saturday.

As mentioned in my previous entry, our 14 year old son Rhys, had decided he wouldn’t be joining us on the trip and was staying at his Gran’s who lives local to where we live. Great idea I thought as Gran stayed near, he would still be able to see his friends and do the things he usually does, we set out at 10.30am, which considering I had planned for a 10am launch seemed pretty decent… It was as we were about to leave I think the reality hit my wife and I we were going on a trip and leaving our teenage son for the first time in his life, this really felt quite traumatic, I think as we knew we were heading off for all these medical appointments it had further distracted us from the fact, we were leaving him for the first time ever.

It took a few seconds for the wife to well up with tears, and to be honest I felt a major lump in my throat (although I tried to be as manly as possible and made some funny gesture to try and lighten the situation), even Rhys was close to tears although similar to me was trying his best not to let it show. I did ask him one more time before we set off if he wanted to come just to say so… but no he was just going to stay.

However eventually we set off, and Jane cried for the first 15 minutes or so, then consoled herself by constantly texting him throughout the journey…

255 miles later we arrived in Sheffield with only a few water stops on the way, Robbie and Chloe handled the journey remarkably well, with the “are we there yet‘s” only coming every 10 minutes or so throughout the entire journey.

Robbie was in great spirits and seemed really well and contented throughout the trip, no complaints of pain and in general really happy with himself. We arrived at Les and Sonia’s (Brother and Sister in law’s) around 5pm, and were treated to an excellent meal and the kids got the chance to play in the garden with Heather their 7 years old daughter, Robbie took an instant liking to the family pet a Weimararner called Harley, a 1 year old puppy with boundless energy… he certainly gave Robbie a good workout for the evening !!!

Later on that evening Rhys had called his Mum and was obviously a bit upset about being away from his family, and asked if he could get the train down to get us, there was no way I was letting a 14 year old travel all the way from Scotland to Sheffield on his own, so me being as soft as I am decided to tell him I would head back up for him early Saturday morning and fetch him, hence at 4.30am this morning I was back in the car heading back the 250 miles I had just travelled down yesterday, to pick up Rhys and turn around and head back down again… A real pain ? Sure but it was worth it to have the whole family reunited again… Robbie and Chloe were ecstatic to have big brother back on the scene. Maybe you would travel to the end of the world for your own kids… (well at least from Scotland to Sheffield)

So it's off tomorrow to the big smoke (London) to see what lies ahead, so far so good...

Gearing up for the next visit – 20th July 20, 2011

Time is wearing on and we are getting closer to heading off to the Evelina once again, we will be leaving good old Kirkcaldy around 10am Friday morning, and stopping off in Sheffield overnight.

Route planned and ready to rumble… You may have read my previous posts about being on holiday, and we have learned this week the downside to this is you naturally come back from holiday with a mountain of washing, beside all the other bits and pieces you pick up whilst away !!! After Jane and I have managed to clear the backlog of laundry, not at all helped by the very un-sunny weather conditions we have quickly found ourselves in the position where we are re-packing hold-alls ready for the visit that is imminent – so busy, busy, busy there then.

Other than planning for the trip we have arranged for Rhys our eldest son (14) to go to his Grans to stay for the week, after lengthy discussions it transpires the thought of going to London and sitting in hospital foyers and waiting rooms did not sound too appealing to him (at his age I totally understand where he is coming from, especially so with the local team he plays football for having a couple of friendly games and training restarting after the summer break). Always has had a busy social calendar our Rhys.

So it will be Mum, Chloe, Robbie and I making the trip, at least this will free up leg space in the car, so we will all be comfortable.

Another upcoming event is a skydive, which my brother’s wife, and her sister are doing in aid of the Dystonia society on the 6^th August, a really touching gesture as (like us) neither of them had heard of Dystonia prior to Robbie’s diagnosis.

Most of the family regularly asks for updates on Robbie and how he is doing, and all have offered help in a variety of ways, this helps immensely and at least shows us they care.

One area I am finding really difficult at the moment is, as Robbie is getting bigger and taller (and he has taken a real stretch lately) some people (probably through their own ignorance of the condition) seem to be less tolerant of Robbie’s instability, and tend to scowl when he walks in front of them, holds them up or gets in their way, I am not the type of person to sit and explain to every person what is wrong with Robbie, but when it happens it makes your blood boil, and it does make you want to lash out, however thus far I have managed to keep the head and not lost it… If by any twist of cruel fate you have a child in a similar situation I am confident you will understand where I am coming from.

In a similar fashion, if people have concerns about the safety of their child whilst playing with Robbie, then maybe they shouldn’t put their child in that situation, people need to simply understand it is his movement that is affected mainly by Dystonia, not his mental, cognitive or emotional state.

I also feel it would be good to share with you all, there have now been a couple of occasions where younger children, standing in a queue somewhere with their parents have asked “What is wrong with him”, all much to their parents embarrassment, this is by no means offensive to me, and I am happy to explain to these kids what is wrong and what problems he has. If nothing else at least they are being honest and asking what they are truly thinking, as opposed to older children and adults who simply have a tendency to look at him through the corner of their eye, or simply ignore him.

In summary I think having re-read this, this part of the blog is a bit dark, and maybe I am just getting rid of some angst that has built up within me, but I think the main point I am trying to get across here is, I have no objections to being asked what is wrong with Robbie, and Robbie loves to talk about himself and he certainly doesn’t mind so if by chance you come across anyone is a similar position don’t be afraid to speak to them, and a smile from a stranger isn’t always a bad thing.

Okay I will step down from my soap-box now… Robbie has had a good week although sleeping is still a bit of an issue, other than that we are all good, roll on Friday and lets get those wagon trucks rolling…

Holidays Are Over 17th July 2011

Holidays are over, not at all... With my redundancy now being confirmed officially (I now have the written confirmation all commences from 20th July), there is still a nagging doubt at the back of my mind on the choice I have made, but hey it is done and I really need to start to relax about it. This is the first time in years I have been unemployed and it is all still a bit daunting.

On the positive side, it is great to have so much time on my hands for a change, without the burden of work related issues at the back of my mind, it is very easy to say work and stress do not affect your family life, but I believe we all know deep down this is not the case and stresses and strains at work do have effects on your mood both in and out of the workplace, it can be very difficult sometimes to switch off from work after 5.30pm some days. Now it is time to have some fun as we slowly (and it does feel very slowly) strive towards the 5 day visit to the Evelina for round 2 of Robbie's treatment.

Fun is the name of the game in the house at this time, quality time with your kids really is the best tonic in the world - 

Several questions are now beginning to come together on our questions sheet for the staff at the Evelina, having now had time to digest the purpose of the visit, we have come to realise  this is our opportunity to really probe on the issues we feel are foremost as part of Robbie's treatment, and no doubt there will still be areas we probably haven't even considered thus far... all will be updated in the blog as and when it arises next week. Some examples on questions so far have been set out below -

• Will Robbie be able to stop his medication after DBS? 
•  How long after op his he likely to be able to return to school?
• Splint – Is there any way this could ever be fixed or will he always need it?
• Will he be able to handle the car journey after the op, or are we better to break up the journey (650 miles)?
• Does / will he need to wear anything special to protect his head initially after the op?

etc etc etc... and so the list goes on....

I have also built a very comprehensive travel schedule (too much time on my hands maybe, I am never this organised), the plan is to head off on Friday 22nd so we are in plenty time for his appointments (and for me to take on the scary thought of driving in central London - possibly a shut your eyes and hope for the best situation here!)

The tests begin at Kings College Hospital initially then back to the Evelina for the 5 days... Hey it will be an adventure I keep telling myself !

Robbie is fully aware he is going back to the hospital, however doesn't seem upset or phased by the whole thing, as I may have mentioned earlier, I am not entirely convinced he has taken on board the extent of these tests, however it is our intention to share with Robbie what is going on, if he has any questions we will answer them as truthfully as we can, to be honest when I ponder this un-phased attitude maybe it is just the case Robbie has become accustomed to going to hospitals, and routinely accepts this as part of his life.

As far as Robbie and Chloe are concerned at this time, it is their holidays from school, a chance to play, run, fight and argue together as brother and sister should, their holiday certainly isn't over and when the weather allows (which in the UK can be very unpredictable) they are out in the garden causing as much mess and mayhem as possible, does this upset me, no, not in the slightest this is their own special safe area, where I know where they are, what they are up to, and they are only a few steps away should any of them need help, or fall over, friends are welcome to come play too - 

So as the say "Life is peachy" at this time, the thought of work, money etc firmly out of the way for a short time we can concentrate on living and enjoying life.

Overall, Robbie seems quite content just now, with only a few occasions where he has talked of "being sore" the sleep thing is still proving to be an issue, however now we are home from holiday, this is much easier to deal with as his room is quite safe, and he can get up and wander to the toilet etc till his hearts content, we know he will drop off eventually.... Yawn !

Holiday Day 5 12th July 2011

So far it has been a really great holiday, weather is good, spirits are good, and the whole family are enjoying themselves.

Robbie has a new found love in swimming, he seems to be really up for this activity and it seems water gives him more freedom of movement, and general confidence within himself. He is freely kicking his legs and paddling away like crazy, although he tends to twist around and end up swimming on his back with the dystonic movements he loves this activity and it really is the best exercise I have seen Robbie take in many many months... Whilst in the pool (which we have visited daily since arrival) he doesn't have any objection to being splashed, sitting under waterfalls or going through splash zones he is, quite simply having a ball.

One area I am going to touch on which I found a bit irritating, frustrating, and rather saddening was Robbie decided he wanted to go down the flume, and after struggling with me up several flights of stairs we eventually reached the top of the flume ready to go ride the waves as it were, we were met by a lifeguard who insisted only one person can ride, despite me explaining Robbie had problems with mobility, he absolutely refused to let the two of us ride together saying "It stops in a very shallow pool he will be all right" I advised but he has stability issues and going down the flume wasn't a problem but getting to his feet at the bottom would be, he still did not take on board the issues, and I decided it was best just to trawl back down the stairs and told Robbie he couldn't go down it because he couldn't swim very well yet. Was Robbie dissapointed, sure he was, but at the end of the day I also understood the lifeguard had a job to do and had rules and regulations which he could not break... we soon got over it and went and played at the water fountains instead. Again another sad reflection and example of the day to day things people with no knowledge of the condition can relate to, until it is presented to them on paper before their eyes.

The first day in the pool lasted about an hour, he came out and was very tired, he actually came home and slept on the couch for an hour, but after his nap woke up again full of beans.

Other than the pool, he is just loving dawdling around and about the chalet with his little sister, even better still his Uncle and cousins arrived yesterday which brought new company and playmates into the whole equation and has simply added to the drama and excitement for him.

Other than the swimming pool, Robbie has a great love for funfairs, and the scarier the rides the more he seems to enjoy... this is fine, however Dad is the biggest wimp going on these things, but I still smile on and do it... (Through gritted teeth most of the time) Mum's turn next time !

There are a few areas where there is some concern and I think it may be beneficial to share, these areas are the following.... 

• Eating seems to be becoming a bit more difficult for Robbie of late, he frequently does not want breakfast (this has been the case for a few weeks now) this seems to be simply down to Robbie not having much of an appetite first thing in the morning, also when he is eating his arm keeps going the wrong way and he finds it difficult to use a knife and fork and when he does, he has very poor coordination, he usually tends to use his fingers where possible.

• Moods can still be a bit of an issue, wheter these are as a result of frustration, or side effects of his medication it is still quite difficult to tell, sometimes it makes you feel like you are walking on eggshells to try and avert any outbursts, although to be fair this hasn't been as much of an issue during the holiday - possibly because there are so many distractions away from his usual day to day routine.

• Sleeping, Robbie still goes to bed without a fight, but again has the tendency to stay awake for hours after being bedded, he is up and down to the toilet, comes out of bed for drinks, back to the toilet and on and on it goes. that said he does drop off eventually.

The above "concern" areas have been fine though (plenty of work arounds for these especially so with little nurse Chloe on hand to assist), because the one important and heart warming thing is, Robbie has not mentioned any pain at all this week, it is absolutely fantastic to see this little guy get some relief from this..

We have spent a fair bit of time just looking, and thinking about the target goal setting areas we discussed whilst seeing the complex motor disorders team at the Evelina at our last visit... we will cover this in detail at our 5 day visit at the end of the month - my initial thoughts tend to sway between helping his arm and hand coordination to assist him better with clothing and eating himself, however other area of consideration is his ankle/foot as Robbie currently wears an orthotic splint to help correct his gait, and I am sure given the chance to lose this, would probably make Robbie much happier... basically I just see us approaching a junction in life ahead and we need to simply establish what route we will take... 

Holiday Day 1 8th July 2011

As you would expect Robbie and the rest of the family were up bright and breezy this morning, the thought of heading off on holiday had obviously been the catalyst for the whole family's early rise, shattering the peace and tranquillity of my usual early morning "me" time.

I like to think of this time as my escape from the world, I usually get up around 5am, and this allows me the time to wake up and have a coffee or three, reflect on the day that's been, and anticipate the day ahead. Normally I hate being alone and become very bored, very easily, as I need company however that early morning rise is the equivalent to a childs "golden time" at school and today there was none of that...

Chloe was first to rise, the kettle hadn't even boiled and in she waltzed "Are we going on holiday today" was the question with a bright grin that spread across her face, next little Robbie strutted in (about 10 minutes behind her) broadly beaming and visibly excited at the prospect of heading off on holiday. Next to arrive on the scene was Mum again even Jane seemed to have a new found cheery disposition (even for it being so early), eventually even Rhys our 14 year old son appeared on the scene and whilst he was being the "forever cool" teenager as you would expect, there was still that excited look on his face.

Robbie and the rest of the kids were raring to go, this was very apparent by the amount of times I was asked "are we going yet" and eventually after the car was packed with all the luggage eventually we set off, music playing and the whole family singing along to their favourite tunes which had been compiled earlier that week in anticipation of the two and a half hours journey to our destination.

The weather on the journey across was like four seasons in a day, and we went from brilliant sunshine right through to torrential rain, but we carried on regardless, and thankfully about half an hour before our destination the rain stopped and the sun came out, again further enhancing our holiday spirit.

We arrived at our destination, bang on check in time, so we quickly picked up our keys and wandered off to find our new home for the week, Mum, Robbie and Chloe decided they had sat in the car for long enough and decided to walk. We did have Robbie's chair, but he wanted to walk for a bit which was really encouraging... off they daundered while I headed back to the car to get our luggage to our destination. To my delight I arrived their before them so was able to get in and be hanging out the window watching for them coming, sure enough by the time I had put the kettle on, (got to get the priorities right) they appeared from around the corner and were quickly running to claim their new sleeping quarters, Robbie and Chloe quickly agree they were having the room with the big double bed, further enforcing my beleif these two have the strongest of sibling bonds and are like bread and butter the perfect combination.

Sleeping accommodation claimed they were very quick to head outside to scout their new surroundings, of course Dad tagged along in the background just keeping an eye from afar but the two of them were pretty much left to their own devices... (maybe should mention poor Mum was left behind to unpack all the family clothes. I am sure some of you who may be reading this are saying that sounds familiar, but we really do appreciate this although it may not show sometimes, we love her to bits and appreciate she is the glue that holds us all together x)

Robbie was having an absolute ball, running around, jumping, rolling around the grass, him and his sister were absolutely loving the moment, this was an absolute pleasure to behold, the thoughts of the weeks that lay ahead totally diminshed, the concerns on Dystonia at the back of my mind, this time is about having fun, forgetting our worries and switching off for a week.

The only time Robbie did struggle a bit today was at dinner, he wanted to sit in his chair to have his meal and we sat him at the table with his chair, there were a few issues with his arm coordination, where the slightest assistance was required, however we got there... and then the funniest thing happened we came out the restaurant and Mum and Chloe had popped into the shop to get some things, me and Robbie went and sat next to the park to wait, and lo and behold Robbie gave me a big cheesey smile and produced a dinner fork from down the side of his chair, it must have fallen down there he proclaimed !!! So if anyone is looking for the cutlery thief who "pinched" the fork - IT WAS ROBBIE :)

Happy days... Day 2 here we come...

Holiday Time Out 7th July 2011

At long last the holidays have come around !

Robbie has had a few really good days, albeit sleeping is becoming a real issue, sure he goes to bed no problem, he just seems to have issues actually dropping off to sleep. This seems to be becoming a familiar pattern, however is more apparent on days where the weather isn't so good and getting out and about the house isn't really an option. This could merely be a case of Robbie not burning enough energy off, but we are watching this closely.

Even better, we are all off on a week's holiday from tomorrow, this will be an ideal time to establish if there is any ongoing sleeping pattern problems developing as no doubt our days will be filled with entertainment, swimming, funfair's, kids clubs and lots of activities. This holiday will be a good distraction from the barrage of appointments we will have over the coming weeks and to be honest I think the whole family need the break... a bit of "us" time.

Personally I have made a tough choice at work, as Robbie needs more in the way of care and support over the months ahead, (and as my work was looking to make redundancies) I have after long and hard thought  decided to go down the voluntary redundancy route, hence from the 18th July I will be able to become a full time father and carer to my kids as my request has been accepted. 

In fairness to my work they tolerated me being off for over six months last year when the dark days of no diagnosis loomed over us, I did not want to go back to this situation again this year and when the chance of redundancy existed I could not miss the window of opportunity I had been presented with, to secure a lump sum to get us some together family time with no distractions. 

Sure I will miss the wages, sure I will miss the company but deep down I truly believe I have made the right choice for my family. Fingers crossed a few months from now I will be able to get back into work, however if there is one thing Dystonia has taught me, there is so much more to life than money and career. Your family and their health is paramount... 

When Robbie needs me I will be there, right by his side, I am sure some of you may have your own opinions on this strategy I have adopted but ultimately I am doing what I feel is right for me and my family at this time...

Get by with a little help from my friends July 2nd 2011

The clue is in the title, that old Beatles classic line pretty much sums up what this chapter of my blog is in relation to... Where can I get help or support ?

I think at some stage of this whole process, you will need to seek out support or advice (Certainly it has helped me immensely during some thought provoking and frankly scary moments) to be fair pre-diagnosis we were simply stumbling around in the dark asking only one question - Why ?

These were the worst times, however once diagnosis is given, believe it or not, things do get easier, you can research the condition and reach out to external sources for help and guidance... There is light at the end of the dark tunnel you have travelled down.

I fully appreciate this is probably a very much "personal feelings" type of subject as some like to keep things to themselves and deal with problems alone, however many others (self included) like to reach out and seek reassurance and advice from parents/carers who have been through a similar situation.... Personal thoughts are - It's good to share experience...

First and foremost Family are your closest allies (certainly they are in my situation anyway), Dystonia does not only affect the child with the condition but also those responsible for their care, along with any siblings... I am lucky in that as previously mentioned I have a very tight family, where we all help each other to get on.

Robbie's closest friend at this time is his little sister Chloe (4 Years Old)  who is always a little rock for him to lean on, she is always there for him, if he stumbles she is there to help him up, if he drops his fork she is the one who will retrieve it for him, if he needs help with the buttons on his shirt again Chloe is there... She really is a little wonder and for someone so young helps with Robbie's care and daily needs without a second thought.

Chloe and Robbie have a very tight bond, however I need to be very clear they are like any other brother and sister and have some very intense moments also, where they fight like cat and dog, but ultimately when all goes wrong they are united, and deep down there is the thought, and comfort of knowing these two will always be there for each other.

Other than direct family, there are a number of resources out there for you to look at or link up with, one particular group I am currently finding very useful and welcoming is via the social network site, facebook, and here I have found some real friends who have been through this whole process, and these people will discuss any concerns, questions or issues you may have, and point you in the direction or even give some reassuring comfort - The Evelina Childrens Hospital Deep Brain Stimulation Group can be found in the following link The Evelina Children's Hospital Deep Brain Stimulation Group alternatively type the group name in your facebook search bar.

Other than that there is the Dystonia society website at http://www.dystonia.org.uk/ another truly wonderful group of people, who also have a dedicated helpline on 08454586322 (Don't be afraid to use it, they are wonderful) They also carry a wealth of literature, leaflets etc which can be downloaded at any time (these can make explaining Dystonia to friends and relatives so much easier). They also have regional support groups in many areas across the UK.

In the event you want to ask anything on a more personal one to one level, I am happy to accept and try to help with any questions you may have by contacting me personally.

I will of course share any new resources I may come across over time, however I 100% recommend you drop by the above sites which are open to all...

Okay time to close off for the day, as it is breakfast time here... Kids have just woke up, and even better still the sun is shining... start of the Scottish school holidays and six weeks of uninterrupted fun to be had... :)

Do I suit short hair? 1st July 2011

Okay so where are we now, as the appointments start to filter through from the Evelina, and as Robbie seems to have forgotten about his dread of getting his hair shaved, a visit from the hairdresser seemed an ideal opportunity to "start the process" and get Robbie used to short hair. don't be misled his hair is normally quite short anyway, however just a bit shorter on this occasion...

Overall it wasn't too much of a shock to the system and he seems quite happy with his "really short" cut... At this time, the idea is the hairdresser comes back to us late August before we go down for Robbie to get the DBS implant, and again it will be cut short... only a bit shorter again next time round, we still don't envisage us being able to shave it at this stage, and if necessary the staff at the Evelina has advised the surgery team will shave it if necessary on the day.

Personally I think he looks dead smart with his short hair, (then again I am a forty something with virtually no hair) so I am probably not the person to seek advice from about hairdressing :)

As per my post earlier this week, in contrast to what I was saying about being moody, Robbie seems to have really picked up his spirits this week, and we currently have a happy, smiling and really good natured Robbie... Playing with his sister and the family pet "Fudge" .... Maybe the holiday build up spirit has hit us all as the whole family seem to have a spring in their step.... So all good there.

So far we have had the following itinerary confirmed with the Evelina, just waiting on the appointment at Kings College hospital (He is to attend this hospital for a Magstm appointment ? - As and when I get more info on this I will add to the blog) to come through now...

Appointments confirmed to date -
Mon 25th July - Admission to Savannah ward

Tues 26th July - 8.30am - 5.00pm
(am - speech assessments)
(pm - PET scan under general anasthetic)

Wed 27th July - 8.30am - 5.00pm
(am - theapy assessments)
(pm - MRI scan under general anasthetic)

Thur 28th July - 8.30am - 5.00pm
(am - theapy assessments)
(pm - goal setting)

Fri 29th July -  8.30am - 5.00pm
(am - neuropsychology)
(pm - meeting the surgeon)

Quite a busy week at the Evelina, however we have a holiday to look forward to first, (Robbie knows only 7 sleeps till this) and this seems to be a very good distraction to all of us...

As they say we will "cross these bridges" as we come to them, all in good time... I think personally as we are such a strong family unit we will get through this as we know we can all lean on each other at any time, and I dare say some of these sessions will make us all laugh, smile and maybe cry a little... but we will share it all as one and we will get there....