Category: Blog

Snow Globe Alert

This year we were lucky enough to go to Euro Disney for a long weekend just before Christmas. It was the first time we have been out for an extended time as a family without the wheelchair. Imp managed very well with all the exercise and for us that is a huge improvement. He had been having some pain in his ‘good’ leg and we were growing concerned that it would turn out that his Perthes would be bi-lateral. At the moment that worry has abated somewhat, not entirely, time will tell.

We had a lovely time, thrill rides aplenty, we had tears from Pixie as she was too small for Space Mountain whereas during our trip to Florida she had been big enough. However, she was big enough for the Rock’n’Roller coaster which she wasn’t big enough for in Florida. She has now ridden a coaster which did a full loop and she loved it! We waved at Anna and Elsa as they preceded the Disney Christmas Parade which featured loads of the kids favourite characters and of course Father Christmas himself.

We had fantastic meals at the Rainforest Cafe, Planet Hollywood and fun filled character encounters at Chef Mickeys and the poshest restaurant in town in the company of mice, princes and princesses. The kids loved it and in the main were well behaved. Mr T got to put the world to rights in the Eurostar terminal as it was proven how terrible queue organisation can be, but that’s a whole other story.

We (and that is 19 of us or a whole boat on It’s a Small World) were all there thanks to the generosity of a very special friend. To thank her before the trip we had all agreed we should get her a suitable gift to say thank you and to give her a memento of the trip. It was decided that we would get her a snow globe, it featured plenty of Disney characters and played music and was a lovely piece. I ordered it, it arrived and was wrapped and placed in our luggage so that the recipient wouldn’t see it until the appropriate time.

Well that was what we thought… 2 out of the five of us had to be wander and patted down, luckily it proved to be nothing other than shoes and jewellery upsetting the scanners. As I walked over to the scanner to retrieve the bags I was asked if one of the bags was mine. Mr T stepped in to confirm that it was and it turned out that it had set the machine off. They sent the bag through again and I knew straight away it was going to be the globe but after they confirmed that as far as they were concerned there was something amiss the bag had to be unpacked. The items were put into plastic crates and sent back though until they confirmed that it was the rather large box, wrapped in heart paper that was setting the machine off.

We explained what was in the parcel and why it was wrapped and so on but they didn’t believe us, and kept telling us under their terms and conditions they could unwrap a preset. Eventually unwrapped it had to be. A few minutes later the wrapping was off, the box was open, the globe out and swabbed for explosives. Another machine then tested the swab and confirmed that indeed the globe was safe. Obviously I was ecstatic that the Disney product I had bought to thank our friend for our Disney holiday, and that we were planning to present her with while we were there surrounded by kids was safe. Several minutes after that we had re-sealed the globe and box and repaired the paper and re-packed the suitcase! Needless to say the others in our party had wondered why we were so late getting though and all found it hilarious once the globe was presented and the story told!

The fireworks show was great, images projected onto the castle featuring Olaf were wonderful and the music accompanying it made Pixie’s newly acquired light up Minnie bow change to an array of rainbow colours. Thanks go out to that special friend who took us and the rest of the group who helped us all make such wonderful memories.

Christmas pretty much crept on us this year. I had done all the preparations before we went away. As we were having dinner away from home for the first time in ages Christmas Eve comprised a trip to the cinema and a game of Trivial Pursuit, as well as catching up with friends and family. The children had a lovely time on the big day itself and were once again spoilt with lots of wonderful presents. We watched Dr Who in the evening and enjoyed another family day.

Tomorrow will bring yet more excitement. Following the sad loss of Tessa in September we had been considering what to do. We came to a decision in early December and our puppy B will be joining us tomorrow afternoon (weather permitting!). We have spent a fair amount of Boxing day making sure we all know how to deal with him and help to train him and ensure that our other older dog M doesn’t get forgotten and is established as top dog!

It is both exciting and daunting, we know he will be a lot of hard work but at the same time rewarding.

Imp’s hip is now in the re-growth phase of Perthes. This is good news and the operation to removed the metal plate in his leg has been moved forward to April. This will hopefully be the last op for a while and will not be as extreme as the others he has endured. This time there will no plaster trousers or prolonged wheelchair use. He played Joseph in the school Nativity and had to sing a solo which melted my heart, the video of which I have replayed on my phone time and time again!

We are all hoping that 2015 will be a better year for our family than 2014. Generally it doesn’t seem to have been that positive for many of our friends either as many have endured losses, illnesses or accidents that have had negative effects for them and their families. I take this opportunity to wish everyone a happy and healthy 2015.

If there is one thing I have learned from the events of this year it is to take as many chances as you can, yes it might go wrong but better to regret the wrong choice then miss out on the opportunity altogether. We are going to see Disney On Ice in Jan and April and Olly Murs in May as well as Take That in the summer, and if I have anything to do with it there will be some tennis viewing as well.

I am now back to writing having finished teaching for a while in November. Having committed to the puppy a couple of opportunities have arisen but I have had to say no as the kids have different hours and trying to manage them and myself adds more stress and by the time I have sorted someone out to look after the kids and the puppy there is very little money left. I have two novels in planning, a kids novel and one which I stated to write for national novel writing month. I am also in the process of editing the first draft of my first book for children and finishing the first draft of the sequel to Tumbling! This is a bit of a gamble and I am hoping that once the puppy is settled and Pixie and Hpops are secure in their new schools in September I can pick up some supply work or part time work around the writing.

My big dream is to write a couple of books for children that do well enough to mean that I don’t go back to conventional teaching, but instead go and run creative writing workshops for primary school children as this will allow me to write and teach.

The next few days should be interesting, and once the kids go back to school I am sure I will be able to blog more often as I intend to be writing every day. Watch the book shelves!

Double Figures

I’m not sure how it happened, I think I blinked and missed it but 10 years have slipped by since Hpops arrived in the world. Yesterday we celebrated her birthday with bowling and a meal out. She was thoughtful and chose things Imp could join in with. She enjoyed helping her friend celebrate her upcoming birthday as well by swimming in her pool. We had one mishap, we forgot to take her cake to the restaurant but as she chose a huge slab of chocolate fudge cake as her dessert, and it was accompanied by the loudest rendition of Happy Birthday you will ever hear I don’t think she minded too much.

I found getting her an appropriate present this year the hardest thing. they call it the tween years for a reason! She still likes rainbow looms, lego and hama beads but on her wish list alongside this were items such as hair straighteners, phone and make-up! The house to too valuable to allow her to have hair straighteners and some glittery make-up from Claire’s ticked that item off the list, then there was the pretty dress, books and perfume. We did give her a phone! Mainly because we can get it bundled into an existing contract not costing much, partly because she is going to longer parties with friends now and also she wants to talk to them and, if we’re honest because we couldn’t think of anything else that she wanted!

School holidays seem to be passing fairly quickly, all three of mine did a stage crazy summer school where they learned a couple of songs, a dance and a drama piece and then performed them on the last day. It was a revelation for Imp who found he really loved it, and much to Hpops disgust wants to start the weekly classes in the new term! Pixie was as confident as ever and performed with a big smile on her face! Hpops too seemed to enjoy herself, delivered her lines with enthusiasm and even began to sing with more confidence. For a while she has spent a lot of time singing around the house. Mr T, who loves all things music has laid down a track for her to sing to and on her birthday she finally did!

The result was fantastic, she was nervous but when Mr T popped the headphones over her ears she relaxed into it and let her singing come more naturally, we know she can learn to control her breathing better and develop her microphone technique but it has done wonders for her confidence! She has written a song for her and her siblings and whilst we just want her to enjoy herself and feel the joy music brings.

Pixie has been making the most of the holidays, she loves singing too and this week we took all three of them to see Matilda, as they were also looking at the songs from this during their summer school she hasn’t stopped singing them since. It was great to see them all agog when we watched the show. I have to give credit to the girls, they have been great so far this holiday, we have had the odd day out but nothing too far away as Imp cannot manage yet and they have accepted this and been supportive. They have come to physio and hydrotherapy appointments and part from a few little moans have been encouraging.

Imp is progressing well and can walk about 5 mins before he needs his wheelchair now, the battle is convincing him to do his three sessions of physio exercises each day. When we go out the wheelchair comes with us but we are all getting used to that now and we try to go to places where the activities we want to access are within a couple of minutes walk so we don’t have to take the chair with us. The next consultant appointment is looming, one part of me wants to know how the bone is doing and the other doesn’t, in case, as we fear, the bone is still disintegrating and so the overall time for recovery will lengthen once more! It will all become clear next week, fingers crossed for regrowth. I have finally finished the first draft of a book for kids that I have been trying to complete for a couple of years and now intend to go back to writing the sequel to my first book! Look for that by the time Hpops is a teenager! I am hoping to resume my psychology studies imminently as well!

Then we come full circle, to the realisation that we now have a child in double figures, about to enter her last year of junior school and everything seems to be changing again. It makes me realise that just when you think you have this parent, kid thing worked out they get older, hormones kick in and of course they develop minds of their own! I’m still learning how to deal with the new challenges life brings us, but at the same time enjoying it.

Cast Away

Just over three weeks ago Imp had his cast removed. It wasn’t as traumatic as we expected as despite him being very nervous the staff at the Royal National Orthopaedic Hospital were once again fantastic. They reassured him about everything and talked to him about what they were going to do. Once it was done Imp flexed his knees a couple of time but decided it was too painful to move. Off to X-ray next to see the results of the surgery.

After meeting with his consultant who was delighted with the way the surgery had gone and was prepared him to be weight bearing again we were off to occupational therapy to return the large wheelchair! This was replaced with the wheelchair we already owned and a frame to support his walking once he was confident. We were told he needed to get up and about and to allow him to do as much as he could and work with his physiotherapist and hydrotherapist to build the muscles back up and begin to walk unaided.

Slowly but surely after some tough love and tears when he couldn’t see we managed to get him up and walking, one stair at bedtime became the whole flight in a matter of days. A few days after coming out of the cast Imp decided he wanted to try a few steps on his own, to be honest it was like watching a baby take his first steps and the emotions no less immersing. He took two awkward steps and fell forward into a hug with a massive grin on his face. It was a milestone. More and more steps followed but perhaps the pinnacle of his achievement to date was his taking part in a school swimming gala just three weeks out of cast.

He was determined to join in and he took part in two races, yes he came last but when he had done his width he had a massive cheer from the parents watching. He had got into the pool unaided, hadn’t needed the pole to grab onto and hadn’t touched the bottom during the race and got out by himself! This was for us massive and as I watched him come back to his chair poolside I had to swallow a huge lump in my throat.

Throughout the process of everything he has approached it with a positive attitude, he has had a smile on his face and while there have been difficult moments I have watched him, in the main, grow in maturity as he learns to manage his disease by himself. Following the swimming gala there was a school fete, he took the decision to attend in his wheelchair as he wanted to avoid being knocked over. Knowing what you can do independently and what you need to ask for help with is all part of it. We won’t know how much progress he has made in terms of the Perthes until the 12th August when we next see his consultant and he has an X-ray. Until then he will be attending physiotherapy and hydrotherapy at least twice a week as well as completing exercises at home.

To say the Perthes turned our world upside down would be an understatement but we can finally see Imp getting stronger and stronger despite his physiotherapist telling us that he is now -5 steps compared to where he was before surgery we know with his determined nature he will battle back to fitness. He wants to be able to join in with his sisters and now he is more mobile he is getting back into arguments with them and enjoying playing with his toys and relishing his own private bedroom space.

It hasn’t all been doom and gloom of course, only yesterday we had a family get together to celebrate Grandpa’s birthday. For the first time all five of his grandchildren were in the same place at the same time. Hpops was beside herself with excitement as she got to cuddle, feed and generally coo over her baby cousins. Today was the summer gymkhana and Hpops tried hard with her riding. Imp on the other hand visited the Queen Elizabeth Park to go to the F1 Fanzone. A VIP ticket had been arranged for him by a friend who had told them about his struggles and watching the video of him whizzing about in a Caterham, pedalling a cycle claiming it was physio and hearing the excitement in his voice as he recounted the events of the day fills me with joy. As we were sitting in the house yesterday listening to the children play with Meccano cars they had played and laughing their heads off we paused to consider how lucky we actually are.

Three wonderful children, a boy who gets on with what life throws at him and tackles it head on with a smile, two beautiful girls who are growing in confidence and ability in all areas of their life. Fantastic friends who have between them lifted both me, Mr T and the kids when we are down and who have gone out of their way to make Imp feel special in a good way. We have felt blessed to have people to pour our hearts out to and next week we attend the Perthes’ association charity afternoon which will enable all of us to speak to people who have been on the same journey as us. I feel this will be especially important for the girls as they have had to make adaptions to accommodate Imp. We have taken the decision to try and do things that all three children can take part in and this has meant the girls not necessarily doing all the things they would like to! Even so the family unit is beginning to bond again, and I have to say as I write I do feel happy to have such lovely people surrounding us and caring for us and hope at some point I get to return their kindnesses and lovely thoughts as all the treats they have given Imp have helped to temper the bad memories with good ones and for that I will always be grateful.

Halfway there!

Just over three weeks ago Imp had his operation on his hip, we were worried and after a prolonged stay in hospital (5 days instead of 2/3) he has made good progress.

A fortnight in we visited the nurse at the GP’s for a wound check, they were happy with his progress, removed the steri strips and for the first time I could see the actual incision. It wasn’t as red as I thought and as all of his stitches are internal there was nothing scary about it. He was also relieved to see this as a lot of his anxiety has been around fear of the unknown and a big hole in his leg!

This week is half term but last week was enrichment week at school and Imp was able to attend for three of the days. He had a great time at the Lego workshop, the zoo visit and the Sir Teachalot  Egyptian day as well as the social side of seeing his friends and engaging in conversations that didn’t revolve around having to move him, going to the toilet or eating. We have been out and about to the local shops and with the dogs as well.

We have discovered that people react to him in a few ways, they either ignore him completely, leap out of the way as if his plaster cast is contagious, bend down and talk to him as if he is an idiot, look away and fidget because they feel uncomfortable around him or, thank goodness, treat him like he is him! He may be in a wheelchair but he isn’t deaf, or contagious or invisible! Perhaps the worst habit is people talking about him as if he isn’t there. Imp has started to realise this for  himself and has on occasion interrupted and spoken for himself and whilst I don’t allow him to be rude I am glad he is assuring himself and speaking for himself, as he has such a good understanding of what is going on he actually explains things better than me, and as he says, no-one else knows exactly how I’m feeling!

Most of his peers have accepted him as he is and arguments have broken out about who will push him around! There are a few who are reluctant to approach, more for fear of hurting him, although once I have explained he is more likely to hurt them if he runs them over then they usually feel better about him. Indeed it is adults that seem to react the worst, even staring, he and I are happy to answer questions and much prefer talking to staring. It has made me admire those who cope with long term of life long disability much more, I have only had a small dose of the ignorance of some people who cannot process those who are outside the ‘normal’ mode and that has been more than enough.

From a practical point of view we are coping well, we have devised a way of getting in and out of the car, he is beginning to be able to scoot around on the floor and transferring from place to place is getting easier and easier. My initial trepidation about being able to move him and get him where he needs to be has all but evaporated. Of course it takes extra time to get him to places, we can only fit him and the girls in the car so as a family of five we need two cars to get around or we tend to walk or stay at home.  I have numerous grazes from his plaster cast and wheelchair having fought to secure him and it in the car but the smiles of achievement when he does something, gets to join in with something or even just has a few minutes out of the house make it all worthwhile.

Rain has played havoc with plans as he has anxieties about getting his cast wet after someone told him it would tun into play -do if he got it wet, but bin bags have proven to be a cost-effective way of going out in light rain and him not melting! I can’t pretend there haven’t been moments of frustration and annoyance both from him and me but each day is a day nearer to being rid of the cast, of course it isn’t a magic wand and it won’t cure his problem overnight but it will help.

Next week is his birthday and he is a bit upset about being in cast for it, we have bought lots of Lego which we hope he’ll like and a Kindle and he is off to Brands Hatch for Speedfest, something I had booked before we knew he needed his operation. I was worried when I found out about his op and thought that he wouldn’t be able to go but a quick call and his ticket was changed to allow him access to a grandstand seat with disabled access. We still don’t know if he can go to school for the next two weeks and from that point of view things have been awkward.

Imp and I both want to be as normal as possible, for me work has not been possible as i have been caring for him but I am hoping that if he returns to school I can return to work as we will both be based in the same place but we’ll see! Whilst we are not really counting down at the moment we will be once his birthday next week has been and gone and I am sure that as the day gets nearer excitement will start to build  rather than the trepidation that took over before the operation. Of course there will be a certain amount of worry, there will still be a number of hurdles to jump over, the x-ray, the removal of the cast itself and the remaining recovery time  be it on crutches, in a less cumbersome wheelchair or the physiotherapy and hydrotherapy but we are beginning to feel we are up to the challenge.

A final word has to go to the parents and supporters of the Perthes Association as the parents on there are very encouraging as well as a source of information. Imp is looking forward to the summer get together as in his words ‘I can meet people like me!’ It struck me how aware he must be of how different he is at the moment and how others are looking at him, it also struck me that while I have been suffering with cabin fever I have managed to escape for a run with Hpops and so on, he hasn’t been so lucky and so I pay tribute to his resilience and praise just how well he has coped with being so restricted. As much as I hate seeing him go through this I am also incredibly proud of him and as well as improved biceps he has shown me what a strong person he is! Well done Imp!

Perthes operation

My son Imp was diagnosed with Perthes disease in late December 2013, at the time it wasn’t considered to be too bad and was treated with hydrotherapy, physiotherapy and withdrawing from high impact activities such as football, rugby and running. This was for an active seven year old boy punishing enough but my little imp accepted it all with good grace and got on with it, continued to limp and yet seemed to enjoy his treatment particularly the hydrotherapy. I was amazed at how well he coped with so many of the things he loved to do being taken away so quickly. What struck us as well was how quickly he went from always being at the front of the queue and out in the lead when we went anywhere to having to rely on his wheelchair to get him up the hill from the local shops.

It was with some trepidation that we attended his three month check-up, we knew that the way Perthes progressed meant that in all likelihood the condition would worsen before it improved and that normality was unlikely to return to him for at least a year and possibly two. What we discovered however was that the femoral head had deteriorated to an extent that it was no longer contained in the hip. Our consultant therefore referred us to a colleague for a second opinion regarding surgery. Things moved quickly and within a week we were sitting in another hospital waiting room to meet the new consultant. He was to the point, examined imp and thought that surgery was necessary but to be sure needed an arthrogram which was performed 10 days later. The results were apparently good showing surgery would be a success and hopefully secure Imp a better long term outlook and healing.

The operation, a femoral osteotomy involved cutting a notch out of the femur, repositioning it and securing it with a plate and screws, and in Imps case keeping both hips abducted in a broomstick cast for 6 weeks. The surgery happened on the 1st May. The night before I hardly slept and during the morning before he went to theatre I was a wreck. I went into the anaesthetic room with him and he as fine until just before the anaesthetic went in when he began to panic. If I am honest I was terrified of seeing him after the operation, I was worried I wouldn’t be able to control my feelings when I saw him with his legs cast but when I did see him I held it together and it wasn’t as bad as I had feared.

the first night in hospital was horrific, imp was suffering cramps and somewhere in the small hours screamed his casts were squeezing him. Being in an orthopaedic hospital you become strangely used to hearing cries of pain but when it is your own son telling you to help him and squeezing your hands it becomes real. In the morning it was discovered that the leg was swollen and the cast needed to be split, this led to a full on panic attack, I held him and tried to reassure him but in the end I just had to be there for him. Pain relief was upped and in exhaustion he slept, I wept and then we started again. The cramps continued but the swelling reduced and Saturday proved to be a brighter day with Imp eating and suffering less with movement. Eventually he came home on Monday, it was a feat to get him in the car but we were so glad to have him home.

I had missed the girls terribly, they had been looked after wonderfully by their grandparents and been to visit Imp in the hospital but at last we were together which was comforting but also terrifying. Could we cope with moving him? What if the pain increased again? Could we handle the sleeping arrangements. We are only two days in but already Imp is only having paracetomal, he has his own bed and things around him. He has his beloved dogs and is slowly rediscovering his appetite. He has learnt to help to take his weight so he can now transfer from wheelchair to bed and back or to the sofa and so on so that one person can assist which means Mr T can return to work.

I fear boredom will begin to set in as he is now rather alert, he has been making the most of mine craft, TV, X-box and so on but we are now re-introducing some school work and we are hopeful that he will soon be able to attend again, even if on a part time basis, as it will help to keep us all same. We are all counting the days until the cast comes off, we know he may still have to use a mixture of crutches and wheelchair for a further six weeks, as well as resuming his physiotherapy and hydrotherapy regime but he seems to be showing great resilience so far. We are taking it each day at a time trying to ensure that we don’t push too hard but encourage him to go for the next step.

At this moment we have no idea how long the Perthes will take to be completely gone and how it will affect his hip long term, he could require further remodelling or even a hip replacement at some time but we are hopeful that the surgery he has just had will help to avoid these outcomes. Yes I will always remember those dark hours in the hospital when his little face was screwed up in panic and pain, but hopefully he won’t, hopefully he will realise that we did the best we could for him and helped to support him through what will undoubtedly be the hardest thing he has dealt with so far in his little life. Not to mention having to support the girls and ensure that they can express their feelings.

We have been blessed with lovely friends and family who have rallied around with offers of help and have made not only him feel special, spoiling him with cards and gifts as but helped me by responding to my desperate posts on Facebook with messages of support. It means more than people realise to see and x and know someone has read what you have written and thought of you, even for a few seconds and felt some empathy. The messages for Imp himself brought rare smiles in those first couple of days and now he seems so much more settled it seems odd thinking back to just a week ago! There is still a long road ahead but for now we are grateful he is over the surgery itself and can now heal and recuperate.

Thanks also to the Perthes Association, a small charity that supports families with children suffering from this condition offering lots of advice and support, the people on there certainly helped us to prepare for the surgery and coming home. I have also to say that the staff at the Royal National Orthopaedic Hospital were very good and supportive, they listened to us and took action where necessary and got us through the dark days.

For those of you who’d like to know more about Perthes have a look at the Perhtes Association website and in the interests of fundraising if you feel you can help please text PERT10 (£10 or change the number to whatever you can afford) to 70070.

Life is full of opportunities but also likes to catch us out as my little Imp has discovered but as he looks forward to getting his cast signed and returning to school I marvel at how brave he is, how he accepts the situation and gets on with it in a way I think I never could and I pray for the patience and strength to give him the support he needs in the harder times. Count down to cast off and walking again starts here…

Adventures in Perthes

It’s been such a long time since I managed to blog and such a lot of things have happened. I have two new nephews and they are both getting on OK. They were born eight weeks early and the youngest has had problems but is fighting hard, the bigger one is out of hospital and making good progress. My job is going well and I feel like I am getting to grips with it and I have made myself some plans for writing but I am struggling to keep up with those, deadlines keep getting moved backwards!

If it my little Imp that is causing the most concern. He was diagnosed with a condition of the hip called Perthe’s and this affects the femoral head. We researched and felt we had a good understanding of the condition and were prepared to deal with the physiotherapy, hydrotherapy and mobility impairments that would result for the next couple of years. We attended his most recent appointment with the consultant just last week, and in line with expectations we were told that his femoral head had continued to deteriorate. What we weren’t expecting was a recommendation for surgery as it is now feared that the bone, when it enters the regrowth stage is that it won’t grow correctly.

So it was with trepidation that we journey to another different hospital yesterday to see a consultant for a second opinion as our usual one didn’t want to commit to surgery until this had happened, this consultant concurred. He described the hip as not in a good place, the Perthes as severe and his movement very restricted, we had been aware of the downwards trend for out Imp as he is struggling to walk far and can’t keep up and has been asking to use his wheelchair more often! Thank you to the people who helped us traverse stairs with the wheelchair as it helped us out. Next week Imp has to undergo a surgical procedure for diagnostic purposes, dye will be injected and his range of moments tested under anaesthetic so that his suitability for surgery can be checked.

If surgery is then considered his best option then another bigger operation will follow and this will render him pretty much immobile for six to eight weeks as he will be in a double leg cast! For him, this is of course a very scary proposition and the outcomes of far from guaranteed! Like anything waiting is the worst thing, at least when you know what you are facing you can find ways of coping with what is going to follow, until then your mind can only run away with the different possibilities and outcomes.

 

Life has changed, we are no longer simply getting up and going off somewhere for an adventure during the holidays, we have to check if Imp can participate, if there is something he can do that won’t upset him as it reminds him of what he can’t do. Of course, there is the light at the end of the tunnel, that even with surgery he should heal and be able to exercise again in a couple of years, but for a 7, nearly 8 year old boy that is a long time not to be playing football with his friends, or going to a party and even running around in the park. It occurred to us watching him trying to play in the garden with a ball how much life had changed. There was a time when he would unthinkingly fling himself about on the ground, taking no care, now every movement is considered and he often guards when out and about to avoid his joints hurting.

Hpops and Pixie as well have had to adjust to what he can now do, as well as attending hospital appointment and sometimes missing out on things they want to do because we need to attend various appointments. So it is that we approach Easter with fear and hope about next week, that I vow once again to try and write more, work more and be happy with the kids but at the same time know that for the time being things here have changed and we need to use our strength to get him through!

I should also say thank you to all those who have stuck with us, helped out with the kids, talked me through things  and shared their positive stories and thoughts and included my little Imp in things so he doesn’t feel so isolated! One thing you learn when your family faces adversity, there are those that stick by you, step up to the plate and help out and those that fade into the background, I only hope that for those that step up I can return the favour, sometimes just a hug or a kind words is enough and I am grateful for everything people have done to help. I try to face the future in a positive manner and hope that we can guide him through this with the minimum amount of pain and that it makes us a stronger family.

The Challenge ahead

Usually at this time of year I waffle on about resolutions and how life is going to be much better as a result of them but this year I’m not doing that, partly because resolutions never last the distance and more importantly because I have realised that life just doesn’t let you do as you plan as much as you might think! Planning to eat less, exercise more and so on are all well and go until something happens…

Towards the end of 2013 Pixie had a nasty accident that resulted in a broken collar bone which meant six weeks of pain, frustration and learning how to tie slings, at about the same time my seven year old Imp started to limp. We had two dr visits which yielded a diagnosis of strained muscles, not too unrealistic as he is active and may well have pulled something. After the suggested rest and pain relief he was still limping and a MRI scan revealed he had something called Perthes disease!

To say I was all at sea would be an understatement,  myself and Mr T were both hoping that it would be something called Irritable hip which is self limiting and lasts only a few weeks, Perthes is self limiting but much longer lasting and getting the right treatment is paramount to avoid problems in later life. Perhaps this is the most difficult part. He is in the group of 6-8 year old boys which show the most variability. We meet with an orthopaedic doctor tomorrow and I have everything crossed that he is in the group that require watchful management, maybe some physio, regular scans but no ‘active’ treatment. Depending on the severity however he could require crutches or even corrective surgery, some of it may be further down the line.

Perthes is a new disease to me, so lots of research has been done but until we know exactly what is happening with Imp we have no idea how high the mountain we have to climb is! Basically at some point the blood flow to the femoral bone was interrupted causing it to die, it basically rots is reabsorbed and then regrows so recovery is possible. The whole process can take from a year to three of four. Depending on how the bone regrows is how aggressive the treatment needs to be, as well as how much of the hip is involved in the initial phases.

Cruelly for young children the best treatment seems to be rest, particularly from sports such as football and rugby. In all probability he will need to avoid football, rugby, go-karting and so on for at least a year, swimming is in and  hopefully some of the other things he enjoys. Telling him he can no longer go and do things he enjoys has been difficult and in some ways we are looking forward to the next appointment and getting a better idea of what we need to be doing.  Perhaps the hardest things however is watching him limp and being in pain and knowing there is absolutely nothing I can do about it! I can’t take it away or make it go faster and we have noticed that instead of telling him no to run about we’re asking him how bad the pain is today?

Currently the weather is helping, running about and going to the park is out but at the moment the X-box and games are providing the entertainment and we are keeping it together. One of the saddest things so far happened when we were on the  way to an appointment and we passed the local park and he said, ‘sorry I can’t come to the park at the moment because it hurts!’ Questions start to pop into your head as well, what about the holiday in October, if he can’t currently walk to the local shop and back without being in pain, how will he manage the theme parks? Will he be able to go on any of the rides? What about other trips we have booked, will they be affected and school, what about games and all the stairs in the building?

I know there are far worse conditions out there but at the moment this does seem dreadful for him, we also know there is a genetic factor so we are watching the girls for signs of the same problem, luckily Hpops with all the activity she does and being 9 already should be OK, Pixie however is coming into the age group where things start to develop!

So there are things I want to achieve in 2014. I want to finish the kids books I have been writing for ages, the sequel to Tumbling and to finish the book I began for NaNoWriMo, but mostly I want to take advantage of good opportunities that come my way, enjoy my family and try to make  success of my job. Wish us luck as this is an adventure we weren’t really counting on!

Stress

NaNoWriMo is over and I have ended up with about half to three quarters of a first draft of a novel which I intend to finish and at some point publish, hopefully in the New Year quickly followed by More tumbles, coming to a Kindle near you by Easter life allowing.

When I decided to take part in the novelly writing month I had no idea how stressful life was about to become. Pixie had an accident at school resulting in a broken collar bone and humerus. This meant watching her in pain and having to try and dress her and manoeuvre her without adding to her pain burden, this did quickly ease and we fell into a routine. We had several scares when she was knocked or fell over and I am sure I was guilty of over parenting! I think one of the hardest things was watching her in her school Christmas performance, her class were being stars and were dancing to one of her favourite songs Shine. She was able to take part and they covered her chair in silver foil and we decorated her sling with silver stars as well as making her a silver wand to wave about. As she joined in I did feel a lump rise, partly pride that she had coped so well with an injury I am sure would have made me moan a lot more than she did, partly just being upset as she couldn’t join in, in the way she would have liked. However the big smile on her face as she took part convinced me that she was enjoying herself. A few deep breaths later and her song was finished and she was off and part of the choir again. The thing that really undid me was the end when she was given a special bow, was happily waving her wand in the air and beaming at me. Tears flowed and for the first time in a long time I cried at school. This was not made any easier by the fact that I was surrounded by friends, colleagues and other children, so a few sobs in a corner and rubbing of the eye and a much appreciated hugs from a couple of friends and  I was OK again.

Whilst all this has been going on our much loved chocolate labrador was diagnosed with cancer, I feared the worst as she is 11 and had another problem which required surgery but she came through the first one with no problems and during this tests were carried out revealing no spread of the cancer. Last week she had the second op and is due to visit the vet this Friday  to hopefully be officially discharged from their care. Pixie should go back to the fracture clinic on the same day and also be discharged.

As the saying goes it comes in threes and on the same day Imp will be having an MRI scan! At around the same time as Lucy was having her accident he was observed to be limping, his teacher was concerned and so after this had persisted for a while we took him to a local minor injuries unit, they thought it was muscular so we took him home, convinced him as much as we could to rest for a week and then allowed him to resume normal activities.  Within a couple of days we were back to the dragging of the leg and limping so we returned to the gp and were again advised he probably has some inflamed muscles and to use ibuprofen and to rest for a week, he did and the problem returned as soon as he began exercising, which when you are a seven year old boy is very frustrating. We returned to the gp, were referred to a consultant and saw him at the weekend. He believe the problem is in the hip and therefore the scan is to determine exactly what is going on. I am hoping that the scan come back clean which means that he has an irritable hip which will heal by itself but have to admit I am terrified it is something more sinister, either something called perthes disease, a growth or a dislocation, the dislocation is more easily fixed than the others but I am trying to tell myself not to panic before I know there is something to panic about! My first problem is to get him to lie still for long enough for them to take all the pictures during the scan!

Still hopefully we will at least have some answers soon and once we know what we’re dealing with we can work towards a goal, in the meantime Imp is fairly pleased to be told that when school is finished he doesn’t have to go and do too many chores but can watch TV, play in the x-box and do quiet activities! He isn’t so keen on my suggestion to read books and practice his handwriting but I guess I’ll have to try and convince him!

I have at least started my new job and it seems to be working out OK, I am enjoying the interacting with the children in a more relaxed setting as being a librarian gives me the opportunity to talk to them in a way that I wouldn’t be able to in class. The administrative side has been a steeper learning curve but I am getting there with that and have managed to track down most of the books that were deemed lost or missing or hiding in the library somewhere! I sometimes wonder why I keep the blog, a catalogue of times of things that have gone wrong or a basic moan, but I think to some extent it keeps me sane. I’m not looking for sympathy or pity but it is a way for me to get it all out, and in part to process in my own mind what is happening, a written way of thinking it all through if you like.  Hopefully the lead up to Christmas will be more fun than fear, presents are wrapped, tree is up and the kids are eagerly counting down the day to the visit of Father Christmas, hopefully by then they’ll be ready to have a lovely time. Merry Christmas to you all and keep smiling!

LIfe at Full Speed

Half term has come and gone and despite the weather’s best attempts we did manage to carry out some activities. We visited Southend in fairly windy conditions but this did not deter the children from the rides! The highlight for them was carving pumpkins. Thanks to the supermarkets selling them fairly cheaply we were able to purchase one each for the children. Designs were made on paper first and then drawn on to the pumpkin. The messy and smelly job of removing the innards was everyones least favourite part of the job. The carving on the smaller pumpkins wasn’t too bad and Hpops produced a brilliant witch. Imp and myself did traditional jack o lantern designs and Pixie carved out shapes. On the night of Halloween we lit them using Halloween scented candles which smelt of candy and were quite enticing. We didn’t have many trick or treaters, although the kids were happy as that meant there was more Haribo left over for them!

We tried apple bobbing which proved to be amusing and difficult, none of us managed to get an apple out despite numerous attempts. The dogs on the other hand were able to get them out as quickly as anything as they simply got on with it! The kids went back to school happy after a great fireworks party. They got to eat pizza, watch fireworks, play with sparklers (gloves on both hands of course) and Hpops was engrossed in a Harry Potter quiz which demonstrated that she had read the books.

Now we are nearly a week into the new half term and I am sure the road to Christmas will be a busy one and I get to start a new job on Monday as a librarian, 15 hours a week that on the whole fit around the kids which leave me plenty of time for writing. Talking of which I have discovered that setting myself challenging writing targets works as I have been taking part in NaNoWriMo, (National Novel Writing Month), so far since the 1st November I have written at least 2000 words a day and having the target imposed means I have ensured that I have been hitting the targets as a result I think I will do this most of the time and I might even get the book I have been planning for years finished! Wish me luck.

NaNoWriMo approaches

For those of you who don’t know NaNoWirMo is national novel writing month and you sign up online. The idea is that you write 50,000 words during the month of November, and this year I have decided to take part. There are on-line local networks so you can meet up virtually with fellow writers and some areas organise writing events so you can get down to writing with people of a similar frame of mind. It is a challenge to write approximately 1500-2000 words a day, especially, as at the moment I am failing to write even 1000, and perhaps this was the impetus. The first draft on the children’s novel is nearly ready but even this has been slow going, too much prevaricating, time wasting and general distractions. NaNoWriMo then could be just the stimulation needed to kickstart the novel. There are two novels i have had planned for far too long, the sequel to Tumbling Through Life and a new novel with a theme that explores friendship and yet I haven’t managed to sit down and write them yet.

I have explained it away to myself, trying to find a job with a regular income, dealing with the children and various appointments that just have to take priority, but the truth is in reality fear. What if no-one reads it? What is people read it and hate it? Should  I use a non de plume just in case? Whilst all these thoughts are going around the writing is stilted and messy and although novels are planned no real work other than research has happened as yet, a few false starts and then the impetus runs out. SO I have decided that one of the novels is going to get written in as much of its entirety as it can this November, strangely for me straight onto the computer and hopefully at the end of the month I will be uploading it to the NaNoWriMo site to get an official word count, editing and publishing for Christmas.

The days of waiting for an editor to pick up the manuscript are over, I am going to take my chances with Amazon Kindle and let the work speak for itself. Fear will no doubt mount up but in the end my ambition has never been to be a bestselling author, just to maybe touch a few people or allow people to lose themselves in my story and characters for a few hours I still haven’t decided whether to add my own name but it’s time to be more confident and allow let others to decide if they want to read it or not! I am hoping that NaNoWriMo will re-establish my daily habit of writing every day for better fluidity and getting rid of those lazy and bad habits that develop, as most teachers of creative writing will say it is best to write every day wherever possible. As I have made this promise to myself, to just write for me without worrying ideas have been flowing, notebooks being scribbled in before the idea that arrives flees just as quickly.

Perhaps I want to take on the challenge as well to show the children how practice makes perfect, or at least a bit better than you were when you started, starting a task and finishing it. They are all working hard at school and this term has had a few surprises. Imp ran in a cross country team and has been going to running club, something I never thought I’d say about any of my children, and Pixie took a little time to adjust as it is the first time she has been alone in a school now her big brother has moved onto Year 3! Now she seems settled but we’ll see what happens after the half term holiday! Hpops meanwhile seems to be as forgetful as ever, we have already had to scour the house and school for glasses, violin and various books that she has managed to forget or lose! Pixie seems to have found something that interests her out of school as she has started to attend a stage school where she is enjoying learning to sing, dance and act, not that she needs much help with the latter as she has always been a drama queen, I just hope we’re not creating a monster!