Jonny Willy

Hi again to all, and happy bank holiday – shame we do not have weather we had last week! England!

Apologies once again for not submitting news more often, reason I suppose for us is that this is how our lives are and we are more accepting, therefore there is not as much to say as often.

Jonny has made improvements cognitively and with his short term memory. Physically he is at a level. Cognition is the key to improving physically. He has started going in the hydrotherapy pool and is able to do a few strokes assisted, this must be great freedom for him. He is also more interested in work these days and does feel with the concept launch of the new product, Hive, he has missed out a little. Awful that he has, however the emotion of missing out is a good sign.

James (eldest) and myself have really struggled emotionally and psychologically in the last couple of months. Whether this is bereavement or acceptance I am not too sure – to be honest I have become a master at face on/face off. James however being 9, is not as good at this and we have had had more than a few distraught nights. As we all know time is a great healer…James however being so much younger thinks time is an age…

Whatever happens, one does not know, there is not a crystal ball, and we are still half way through the majority of Jonny’s progress…it would be lovely to be able to make plans, but one cannot…

Anyway – Jonny is still very much into being visited by people who know him and to see new faces..if you Google, STAR Foundation Rotherham, this is where is he. Or even a phone call – this is where he responds best.

Have a good weekend xx

Hi to all again!

Well it has just taken me 12 months to pluck up the courage to go on facebook…needless to say I am unsure of placing any activity as I don’t really do much except work, kids and jonny… However would like to say, thanks to all those people whom have sent me some lovely comments that I have now responded to!

Jonny has been pretty down in the dumps…that he has the choice at his new place, means he is being lazy sometimes and choosing to stay in bed. Yesterday I told him that if he was not going to talk to me, I may as well leave, he then laughted and started talking to me (now some things do not change!).

He has been too weak to bring home lately, and if we had tried it would have been too hard on all of us. The new place is lovely and things are starting to come together now better than what they were. He has completed his initial OT and Physio assessments and now the “enablers” will be able to be trained up to work with him too.

I have just ordered him a box of tricks so when people visit him there are lots of activities to do with him…he needs lots of challenges – so if you do go visit – do not let him get away with being lazy!

Hi there to all

Back from hols, lovely to see Jonny yesterday – was in good spirits. Off to give him a spruce up today for some one-one time, which he seemed to like the idea of yesterday – think it gets a bit too much when we all pile in with him. Nathan seemed to like the place very much, flickin the lights on and off, stealing all the apples in the fruit bowl, resetting the timer on the oven – just all the normal things.

Message to pass on for visitors – pls no visitors from 2-4, this they are going to leave as bed rest time for him…. So thanks for your understanding…

Give some more news once he has completed his Physio and OT assessments.

Hi again

Once again apologies for not having written anything sooner, but I have been waiting to get some concrete news! This we have…

Jonny is moving from Pinderfields to a place in Rotherham (Meadowhall exit) called S.T.A.R. Foundation. It is a family run NFP organisation who specialise in transitional rehab. It has all the bulk of the therapy he needs (OT, Physio) plus a hydrotherapy pool and is really one of a kind on this type of rehab place. Recently it won a Centre of Excellence award. We are doing a visit on Wednesday and the moving date is Good Friday. Not necessarily brill for us as we go away the next day to Cyprus.

Jonny has been a bit up and down recently. More to do with the fact that he has recall on his situation and obviously it does not put him in the best of moods. I had a lovely afternoon with him last Thursday, two way conversation for about an hour (very good for J), then since he has been quite low. Am sure he would benefit from seeing a few new faces (prob sick of mine!). Strange to think that this time last year we had a great family hol in Cyprus, for us to get back to this the day after. Its harder at the moment as well with Jonny knowing more about his life now, and you just cannot compare this and previous.

Lil James said a couple of night ago, “We are doing ok without Daddy, aren’t we Mum?”, Yes darling back to him, and thinking, yes but it would be so much better if he was here too.

Happy Easter

Hi to all..

Still stuck in the midst of all the protocol but things are moving on. Have been looking at another rehab home for him – this one near Meadowhall, so well catered for wifey too! Its a brand new place and they have the therapy he needs on tap at this one, which is much better. I have requested an assessment for him there too which is this wednesday and friday.

Jonny is pretty down at the moment – I think he has full realisation now that he has had the accident, yet to be confirmed but think he is out of PTA and the “acid” phase has worn off…He is very aware that being home full time is not the right place for him yet, knowing that he needs more physio and other rehab needs.

Just recounting a couple of conversations when I went to a friends 40th on Friday evening (first time out in 3 months)! Someone asked me, how I was coping “considering your life was hard enough before”, I asked them what did they mean by before??? The implication was having an autistic child… Have to say I have never thought this at all. Jonny or myself would never have it any different…throughout all of this, Nathan has kept me level headed and calm by the way he lives his life, his black and white ideals, does what he wants without worrying what other people think or care. He is the happiest person I know – we have a lot to learn from autistic people.

Another conversation I was party to was based around someone else who was also having a tough time at the moment and that they did not ever want to break down in public and friends were saying they should….Should we? Jury’s out perhaps, but I know what works best for me!

Summary of the night out – easier to stay in (??!!), hoped it would have been a night off from it all….not so!

Hello

Been a bit stuck with protocol and NHS / Social Services politics… Jonny is still at Pinderfields but we reckon he has had enough of that environment and wants to move on…We are not fully able to have him home yet, so what happens next..

He was offered a place at a great rehab home in Castleford, which I posted info on, that he missed. SO we have to wait for a place to become available. They have offered up a place in Leeds but this would mean lack of top up therapy back at Pinderfields which we believe is needed….so only other option is a place in Barnsley and we are waiting for them to do his assessment.

I am also wondering if Jonny should be home…thing is with having an autistic child who tends to wake up too early it would be too much work for me as the main carer…so decision making time is not very easy..

Jonny is plodding along still.. He is getting very stiff which can hamper his ability to walk daily. He now has a frame with wheels and it does make him stand tall and easier to move around. Cognitively he can struggle sometimes – however it is very reassuring to know that based on the length of time he was in a coma for that his progress is pretty damn good…

I know he feels embarrassed by the way he is now, and god only knows how that feels for him, not many people that can put themselves in his shoes…All I know is that he will come home one day and that personally I do believe hand on heart still, that he will do well.

So its 1 February today…moving on to 10 months post the day….and life is not any easier I can tell you..

Have had to get up at the crack of dawn to pack as am taking the kids to Center Parcs for a few days…Nathan woke at 1am last night (sat in night) so I had to get to bed so early Sunday as was walking on egg shells…so thought I had better update the blog…

Saying that there is not much news since last time I posted. Jonny has overcome his bug and is showing off his new walking tricks with his zimmer (it does have wheels) though no helmet required.

Jonny is still confused sometimes when he talks, but is becoming more and more aware of his circumstances, and this of course does get him down. I tend to see the “real” Jonny – in the sense if he is down in the dumps he will show it to me…tends to be more upbeat with other people.

We did the “quiz” with all the other head cases (and some really are bless them!) – we came last…anyway, here are some of the questions we did get right:

1) whats the name for a noisy ghost in German
2) who lives at Evergreen Terrace
3) what are the name of Ian’s twins on Eastenders
4) whats the name of a word thats spells the same backwards
5) what is the main vitamin in broccoli

There were 19 others too, we did get 15/24…think everyone else must have cheated!

Little story re one of the other patients….went to sit down for the quiz, thought of one of the patients, Jeremy – that top looks familiar, went up a bit closer and its only Jonny’s Xmas pressie I bought him…Says to Jeremy, I like your top. “Oh yes”, he says,” its grand is this one”. Well of course it is, Hugo Boss love…..informed the staff, and turns out Jeremy has nicked all Jonny’s designer gear!!! Nice taste Jeremy and nice try of course!

Hello again

Sorry its been awhile – struggling to find any time with the weather being as it is, kids being off, seeing J and working…

Jonny has been a bit off the last couple of weeks. Prior, we had an amazing visit home whereby with an adult either side he walked from our kitchen all the way to the car and thats some distance…then he got a bit of a head cold and it has knocked him for 6 in mood and recovery. Sure he will get back on top again.

He has been doing fantastic with his numbers, seems to not have lost the knack off working out the cost and margin of a chair. I also went in to show him the new product development and he was on the same lines as we were, which is actually very reassuring…I am sure being involved like that in work must be a good thing for him.

We recently had a meeting and they are going to discharge him. I am actually thinking this is a good thing. Fear of him being institutionalised and I think that he has got used to the same staff and does not want to work for them as much..They have also got him to a manageable level physically in the sense he is either one to one or on walking frame alone or two to one. With him moving it also means we can control some of his recovery to a degree..let me explain!

Rehabilitation therapy for brain injuries whether it be stroke, car accident, autism is all the same principles….(having spent a load on books for Jonny, realised I had read everything before with Nathan!). We have now been doing therapy with Nathan for 5.5 years, so do kinda know what we are doing. The consultant who works with Nathan is going to work with Jonny and put a programme together – he has visited him and has a good picture of what J requires. Where Jonny goes next they will rely on cognitive therapy from the community, and having had to rely on this method in the past with Nathan, know it will be inconsistent – hence why we will be able to do a little of our own thing with him. I have checked this with the place (prob in Castleford), where he will go and they are fine with this.

We have started to try and have J home each Sunday now between 9 and 3…last week was quite tough as he was a dead weight and managed all day without any help, but then after alot of sleep and him being very relaxed, I just could not lift him, and he was too tired to try to help me…had to do an emergency ring round, luckily one of the neighbours came shooting over… Taught me a lot that when its good its fine on your own, when its not, contingency is a must.

Anyway, off now to go and get him for the day.

xx

Hello to all again…couple of things…
We had Jonny home yesterday (fourth time in 9 days!). Snowy weather permitting we had to eject him from the car on the main road and push him up home.. Where there’s a will there’s a way.. When we got him through the front door, he started leaning forward and said he wanted to walk. Choosing my friends well of course, physio on tap, we assisted him to our kitchen (a fair walk in our place), then after his brekkie, another walk to the living room..

So do you know what, hats off to Jonny, def some of the hubby I know alive and kicking, or rather walking!

On another note, listening to best selling albums of the decade, one of the best selling ones had this song…definitely sums up a few things from me, and in not so many words (which tends to be me more publicly!).. Over to you guys for a classic tune!

Name that song in…..

I didn’t hear you leave
I wonder how am I still here
And I don’t want to move a thing
It might change my memory

Oh I am what I am
I do what I want
But I can’t hide

And I won’t go
I won’t sleep
I can’t breathe
Until you’re resting here with me

xx

P.S. Flights booked for October family holiday….Last one with the sunnies on!!!!!

HAPPY NEW YEAR to all…

On Christmas Eve, a friend sent me a message saying, Merry Christmas and all the best for 2010…to which I replied, “Cannot get any worse”…So on Christmas Day, not knowing how Jonny would be, my dad set off in his car with lots of food and presents to see his mum, then maybe coming to ours thereafter…sticky situation and one phone call later, car stuck on ice, needs to be abandoned..So we send my sisters husband to pick him up, crashes his car…So distress female calls Mr Golfer (no longer shall I comment on these naff huge American pick up trucks) – who sets off to pick up the rest of my clan in their states. By 4.30, starving we have our lunch – or should I say tea…Needless to say the kids and Jonny were oblivious to all of this!!!

Jonny wanted to sleep over on Xmas day, not prepared enough and after a harrowing day I said we would pick him up early boxing day as if he had not been away. We did this and it was just way too much for both of us. Jonny slept and was not really with us for the visit, and I was just, well knackered. We have delayed sleepovers for a wee while longer now.

Jonny birthday (41), he came home, and was on cracking form all day. Was quite manic with lots of visitors, but he coped really well and was King of the Bed for a day, would not get up, and think he is getting me back for all the hungover sundays I made him do jobs. His birthday present to us was showing off his new walking techniques. Frame in tact, have to say he is quite speedy…

New Years Eve, we went to the hospital and booked the flat to have some time with him. Took him over a chinese which he really enjoyed and then left him to the “party” there. I took the kids to the neighbours, who put on a fine party with Moet on tap (marvellous), great band and Nathan we could not drag away – in autistic glory with all the kids playing on the Wii. Tamsin though grew tired and came home around 11. Needless to say, was not that bothered about seeing in 12am.
Jonny’s resolutions for 2010 from me though…walk more, talk more, up and down stairs and to ensure he is home and on holiday with us by the end of the year. This we shall achieve, and that will make something to celebrate at the end of 2010. And with that comment, Happy New Year!

With all our love, Jonny, Annabelle, James, Nathan and Tamsin xx

We have kind of come on leaps and bounds since I last wrote…

The physio team (stress team here!!) have managed to get Jonny standing up and walking a short distance aprox 8 ft there and back.. They need hands on deck for this (4 people) and it will take some time and lots of practice, but how good is that!!!

Our training has gone well and we are having another practice home release this weekend, with us doing most of the work. Subject to this and maybe another practice with us doing all of it, then Jonny will come home forXmas day.

He does well up quite a bit at the minute, realisation kicking in…however he does seem to pull himself out of it well too.

As part of my training, I had to wash and dress him. Came to the washing bit of the “back, sack and….” area and he stretched out, put his hands behind his head and had a grin from ear to ear.. Still got all his senses there then! Maybe too much info, I know but does put a smile out there for all I am sure.

So on a final note of this update, would like to wish everyone a Merry Christmas, have decided not to send out cards, as frankly, can think of better ways to spend my evenings than doing 100+ cards! Enjoy the season.

Just a little one…

Wanted to say what a trooper Jonny Willy is…me and bad boy Mr Golf next door did our training today. We had to do the transfer in and out of his wheelchair so many times, wanted to sit in it myself. Not once did he complain and it was obviously very hard, especially having Mr Golf hold onto him in proper gay hug!!!

Hat off to JonnyBoy xxx

Hello again (are people still reading these???)

Its been a very busy week, well for me anyway! Fitting in with visits to Jonny, working on the Connection price list (deadline for printing is tomorrow!!), Mix North Awards, girlie catch up night, 3 kids etc etc…feel like have not actually done any of it, but then kinda feel rather knackered too. At the awards night, I had persuaded work to go for Company of the Year and wrote copy to be submitted myself, we did get shortlisted, but did not win. Would have been lovely to have gone into see him on the Friday after and say, hey, look what you got!!! All is going great, but would have been something visible for him. Did get lots of Connection products flashing up on a big screen and one of the designers who works with us (and others) did win. So still good news.

Jonny was great on Saturday, making jokes, laughing away, chatting a lot. Kept asking me to do little errands for him around the rehab unit! Lord of the bed! Sunday, today, he was really pleased to see us all again. Though Tamsin did get really naughty and did make the visit hard work towards the end. Whilst Nathan is stealing all the patients toast. Shoved the ipod on Jonny and watched him nodding away to American Boy… When we said goodbye, he started leaning forward and said…”I’m coming”…nearly rips your heart out..Don’t know which is the worst really, leaving him – lonely for him, or then being home – lonely for me and kids without dad… Then you get thinking, having a forced insight into what it must be like to get divorced, why on earth do people think its better on your own? Its quite a few months in now you see, lots of people getting on with their day to day when yours has not changed. That Jonny is still at the rehab unit is in a strange way the good news, as it means he is still progressing.. So you gotta give it to him in a big way.

James is really missing dad and wanted to stay longer at the hospital today. He has asked me to drop him off and then go back for him without us so he can spend some quality time with Jonny. Anyway, to cheer him up said we could get the Xmas decorations out and sort where we are going to put everything up this year.

Start my moving, handling and nursing training this week with a view that once a) am confident and b) they give us the sign off, we can start having him home for short visits building up to being home at the weekends. Have drafted in two of J’s friends as back up assistance to help with the car transfers.

As you can prob tell me not having the best of days, perhaps up coming this time of year…

Next meeting for Jonny in a couple of weeks, so more news then.

Hello again

Another rollercoaster week…Jonny came home for a short visit on Wednesday. Kids desperately excited, I was really nervous, and prob Jonny apprehensive too… Poor lad was sick coming over in the car, then with the two transfers, being changed, took it out of him and we put him down for a nap in his living room / make shift Jonny room..Slept solidly and woke up comforted with a smile on his face. We then had to give him lunch (curry from Bengal!), proper Nespresso coffee – but I think with all the noise, kids eating around him, reality has started kicking in somewhat. Did speak with him later and he said it was difficult, I asked him if it was worth it, he said it was..

Visited him last night with the kids, big cheesy grin to see us, then when I have a little one to one, he does go more subdued. I asked him if he understood what was going on a little more, he does. I asked him is he still the determined bloke I married, he is. Are you going to use that to get better, he is…

We are now being trained in moving and handling and basic nursing for his requirements for his next visit which would be a little longer and fingers crossed over Xmas, which will prob have to be another sedate day as it is very hard and really takes it out of him.

Last Friday I got abducted (with sis Becky) by 30 Coast to Coast Riders, Vodka Redbulls and B52’s later found myself dragged into some place in Huddersfield where the men were tattooed louts and have seen better women in Viz (apologies anyone out there!)..Did not think that people my age still went out into town been that long (around 7 years) that I have frequented the local nightlife! Needless to say after arriving home at 3am, had a lovely evening with them all, but did cry all the way home in the cab thinking how much Jonny would have loved being there and guilty that I had been out with all his friends and not him..

Anyway, LOL as usual and thanks for the support x

Well we are all back on English soil and feeling better…need to be after our spat of illnes and then 10 days of freaky thunderstorms, bloody global warming!

Jonny is doing very well and his voice is getting much stronger. He seems to have an eye for the ladies again and I have heard reports of ladies holding his hands, but then he cannot remember who they are, he has the perfect excuse I suppose. He is still very deep in what is called PTA (post traumatic amnesia), apparently this is a period whereby you can sometimes feel like you are being abducted by aliens. It is where you are trying to make sense of things and get your memory back into chronological order again. Until you have fully come out of PTA it is difficult to get much better physically as you need your memory to sequence motor movements – kinda makes sense doesn’t it. So sometimes he is very with it, and sometimes he is quite confused! Saying that functionally he is still coming along.

His new discharge date is early December, but this does not mean he will be coming home, and they may still change it if he is continuing to do well.

Anyway, time to sign off and get some work done, will be in touch after Jonny next update meeting on 17th. And maybe see some of you this Friday at Nosh???

Well here we in Cyprus! Been a bit of a struggle so far… all kids came down with the lurgy beforehand and were off school. Nathan *albeit in wheelchair) decided to not onlybe autistic in wheelchair getting on plane, but went as white as a ghost and nearly passed out, got the spanish inquisition on swine flu and was actually allowed on plane!! Then after him coughing up blood sat am, had to take to hospital and ended up with chest x-rys and blood tests – what more can happen, arent we meant to be on holiday!

And through all this Jonny seems to be flying high and doing really well! Spoken to him daily and he has conversed really well and reports from friends are top notch (top banana, remember that phrase, showing my age!!!).

LOL xx
FYI – Nathan now eating again today, hurray!

Hello Guys

Again I apologise for lack of updates…life still as chaotic as ever!!!

The hospital is pleased with Jonny, so much so that they want to keep him!! Bad news for us, but it does mean than he is carrying on making progress…let me explain.. At some point patients need time out from acute rehab for downtime, usually manifests itself in a slowing down on progress…as Jonny is not slowing then they will keep him!! His new date is early December and this will be reviewed mid November…

Me and the kids are off back to Cyprus again today, really need the rest, they are not too well though (think they may have had swine flu but not 100% sure), but with paper bags at the ready, we will be getting on that flight!! And, though illness not hit me yet, all we need is to just get there, deal with it all when we are there, more time to be ill then. Really need the break this time for some sleep and sun! Jonny has an army of visitors lined up and fingers crossed will have made some cracking progress by the time we get back!

Thanks to all for your continued support. LOL xx