Tag: Perthes Disease

Operation again

This week was a big week, Imp had his operation to remove his metal work! Understandably he was very nervous before hand and had to be up very early to get to the hospital on time.

We got there and were shown to Imps’ bed and met the anaesthetist and SHO and did the consent forms and got Imp into his gown and as he was first on the list it wasn’t long before the porters arrived and wheeled him down to theatre. Mr T went with him while he went to sleep and then the wait began. Clock watching is never good but as soon as you step into the hospital time seems to move in a different way. The minutes crawled by and eventually we were given the message that Imp was in recovery.

It is always hard to watch someone arouse from an anaesthetic, Imp was in pain and not particularly communicative and thus morphine was administered to help him manage the pain. Also waiting for us was a rattly tin with the screws and plate that had been holding him together, something which we have still not looked at. After what seemed like an eternity but was actually 45 minutes we were allowed to go back to the ward. Imp was drowsy but soon the morphine would provide a sting in the tail!

We have discovered the Imp doesn’t really tolerate morphine very well and this meant staying in hospital until nearly 10pm and we were nearly there until the next day! Since being home he has made a rapid recovery. Eating and drinking normally, managing well on his crutches and experiencing less pain as he goes along and already asking if he can go outside on his crutches. Hopefully this will be one of the last hurdles he has to climb as if everything turns out OK Imp should not require further surgery. for the next six weeks however he has to avoid contact sports and running and then subject to the x-ray being OK he can return to usual activities following this.

In the meantime poor old Hpops has a very heavy head cold and has been feeling unwell with it and so is spending a day in bed, with two birthdays approaching I sense they will be more about infection control than celebrations at this rate but you never know, things may improve, I hope everyone will feel better and we can have some good old fashioned family time.

Prior to the op the kids had their stage show in a proper theatre! They were nervous but used the adrenaline to put in superb singing, dancing and acting performances. Mr T and I were super proud of all three of them, not to mention that at the same time they were keeping up with their school work, rehearsing for a school concert and music exam and preparing for Easter.

Writing is going well, the fist novel for children is now drafter and another planned. I am currently playing with a new publishing app and will see how that goes. I have been continuing with the sequel to Tumbling and have even managed to fit some teaching in as well! Currently all seems to be going well.

I have to say of late they have all made me very proud showing us, (in the main,) their best qualities and ensuring they are doing their best at all times. Keep it up kids!

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.

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!