It’s actually a good sign that I’m writing so few posts because it’s proof of just how much Perthes thankfully isn’t featuring in day-to-day life, and let’s hope it stays that way!
I do think we have tested his hip out a bit more this year and starting to be braver about pushing the (unknown/perceived) thresholds. We were told not to limit anything so that is what we have tried to do, but will save more of those examples for my next post.
The big thing that has prompted me to return here is to log what I believe is a HUGE achievement for James.
This year he progressed from Cubs to Scouts and last weekend he took part in a Scouts organised event ‘The Breakfast Chase’. This entailed 50+ teams (160+ Scouts and Explorers) from various local Scout groups descending upon Dorney Wood Scout Campsite in Burnham to compete in an orienteering night hike.
I believe the course was supposed to be about 6 miles and I was confident James could manage that given all the dog walking up to a previous record of 10km.
James and his three teammates set off at 5pm, with the goal of completing the route and checking in to 7 base stations along the way to complete challenges/activities.
I was secretly tracking them on the iphone (sshhh!) and did question to myself their whereabouts on a few occasions, as they did seem to be going in all manner of directions! I managed to hold off until about 22:30 before I finally gave in and texted their leader for an update. Thankfully they eventually made it back at 22:50, downed a hot chocolate perhaps, and pretty much dived into their tents and sleeping bags!
Relieved obviously that they’d made it back, and so very proud too, for a number of reasons:
James could have shied away from taking part but he kept an open mind and agreed to give it a go, helped by the fact he was doing it with his friends.
He’s not done many night hikes and not without an adult close by either, so I know there were moments walking through the woods in the pitch black when he felt out of his comfort zone, but didn’t give up even though he might have wanted to.
And here’s the biggie! Thanks to getting lost ‘a few’ times, they managed to clock up about 17km! And something in the region of 30k steps, which for James, is definitely a new record! And one to be proud of.
To put into context, he was at this same campsite in June 2019 with the Cubs, probably going along same paths, but was then being pushed around in his wheelchair, with his fellow Cubs wanting to be the ones to push him, and also several kind parents taking it in turns to help me! Three years later he’s walking 17km in the dark! I didn’t even dare dream that would be possible then in case I was tempting fate.
June 2019 at the same campsite, his friends all wanting to have a go at pushing!
James almost seems a bit indifferent to this accomplishment and thinks I’m being an over emotional parent (which I am). Part of me wishes he’d be a bit more emphatic in celebrating his achievements but part of me also thinks it’s probably good that he’s not making a big deal either, because it means it’s just not a thing for him, not a limitation, not a talking point, and just getting on with being an 11-year-old. Besides I can more than make up for it! 🙂
The Scouts putting their tent up ready for their late night return.
Ready to go!
They made it back!
Cooking themselves a well-deserved breakfast after a few hours’ sleep!
The big question is, can his friends convince him to do it again next year!?
Thanks for reading. Check out all the posts for our full Perthes story!
In October, I ventured to beautiful Cornwall, to walk a distance in a timeframe I had never done before. So that was my personal challenge for 2021, and it seemed worthy enough of sponsorship. I had yet to do my bit to support Perthes (Howard did his bit when he took on his first ever sprint triathlon a couple of year ago), in particular to support the research side of things.
Rather than repeat the event, the rationale for both of the charities, and the pictures, you can have a nosey on my Just Giving pages:
I’m really proud of this achievement, not only because I was still able to walk afterwards (just about), but because, together with support from so many friends and family, and my amazing employer Microsoft who fund matched the sponsorship, I managed to raise £1000 for each charity, both close to our hearts.
I was also really chuffed at the engagement, support and thanks I got from both charities. I know you might expect this given we’re raising funds for them, but compared to other/Perthes charities we have supported in the past, they provided personal engagement. Steps has ensured that the funds are going towards research related efforts and both provided swag to help me raise awareness too. Thanks Stepsand Alzheimer’s Research UK.
Let’s hope that with continued support and research, one day, we’ll have more answers to both and can better prevent both conditions.
All that remains for me to say, is thanks for reading, and a very Happy New Year to you, all the best for 2022! Missed previous posts?
Not really much to say other than we’re thankful that we managed to get our annual check up consultation on 22 September, with the usual scan, and a positive reaction from the consultant. It’s all we can ask for really. Provided nothing worrying arises, he’s happy to not see us now for 2 years!
And whilst we’re thrilled and hope we don’t need to see him before then, it also feels strange to go for 2 years without any ‘evidence’ and reassurance that we are still heading in the right direction. It’s such a slow process, and it’ll never be a perfect hip but we continue to hope and gain confidence with each year that passes that we’ll get through without any surgery (childhood at least).
2021 is actually a milestone year because Perthes has almost been non-existent for us…no crutches, no wheelchairs, no conversations with school, no adaptation to PE, no limitations, and so on, so I’m marking 2021 as a GOOD year! 🙂
So that’s the main Perthes update before the year is out (yes, typing this at 6pm on New Year’s Eve)…one more post to do!
And just like that, it’s April! There have been so many thoughts/prompts this week that have motivated me to get a post uploaded:
I haven’t yet posted anything so far this year….
I posted last Easter, I should post this Easter….
I’ve got a few days off work, I really should write a post….
Facebook memory of James skiing the year he was diagnosed with Perthes
A year since first lockdown; second wave of home schooling
Cookie’s 1st birthday and this week it’s a year since she arrived into our home
Beautiful Easter Sunday, James did his longest walk so far – 6.5km/4 miles
What on earth is going on with the weather?….
I should probably break this up into a few shorter posts but it’s going to cover 4 months in one hit, sorry! Make an extra large tea or coffee for a longer read!
Lockdown life
Of course the year started with the schools closing again, which I was dreading, but I promised myself to not get as stressed about it as before which was achieved mostly due to the school, this time, getting Microsoft Teams sorted, and having the connection made a huge difference. Still hard to juggle work and home schooling with a pretty constant flow of distractions but nevertheless, it seemed more organised/structured, and a greater sense of a ‘school day’.
It’s snow time!
Cookie’s first time experiencing snow and needless to say she was as excited and caught up in the fun as the rest of us! This was also the first year James could really enjoy it as a) we had snow and b) his hip thankfully was able to withstand the hours of playing in the snow and walking back up the sledging hill multiple times (not easy for any of us it seemed!)
Cookie’s first birthday
Hard to believe it’s a year since we spent February half term waiting for the call to say the puppies had been born and know for sure if we were definitely getting one of them! She’s been such an amazing addition to our family and my heart melts whenever I see James with his hairy canine sibling, full of love for her (even though I still have to do all the work, no surprise there!). I think we made a good job of spoiling her, and she got a walk with her boyfriend Max too, and they always have a good romp! 🙂
Back to school school!
8th March: This will always be a memorable day with mixed emotions for several reasons, the two main ones being; the schools really did re-open, but it was also the day that my Father-in-law sadly passed away after suffering from vascular dementia. 😦
Easter weekend/holiday
We kicked off the Easter weekend with a day trip to Worthing on Good Friday, a frequent sea-side getaway where Howard’s Dad often took the family, and provided not only a lovely trip down memory lane for Howard, his sister and neice, but a much needed change of scenery for all of us.
I’m not going to lie…it was f,f,f,f,freeeeeezing, but thankfully the sun broke through just in time for fish and chips take-away lunch on the beach, and it was a gorgeous afternoon. And! What I really really enjoyed was being able to go away and not have to pack the wheelchair (‘just in case’) and not worry about how far along the sea front to walk and back….James was taking it all in his stride! Long may it continue….
Reminiscing – happy/sad/hopeful
I do love Facebook memories suddenly surfacing pics and videos from previous years and of course Easter holidays always means a quite a few things popping up. Our previous ski holidays always show up but for some reason it hit me more this year, perhaps because it’s now 4 years ago, and the memory starts to require a jog on some of the details. I loved watching the videos of little James skiing. (I’d share them but haven’t paid the upgrade for ‘premium media’!). Smiling and laughing, feeling so proud and happy at how well he was doing, and then also so sad, that just a month later, May 2017, we spent the May half term holiday at the hospital trying to find out why he was suddenly limping.
I know now, from my understanding of Perthes, it was a matter of time to be discovered. I don’t believe it would be something he will have been able to avoid. Is it hereditary? We don’t know. The cause? We don’t know. I’ll always wonder if it was this ski holiday that made it surface a few weeks later. Or would it have happened then anyway, and it’s totally unrelated? Or some other event/incident would have triggered it. But I guess it was always there, lurking, waiting to spring on us.
I have it on my list of questions for the next check up later this year, (provided we are still going in the right direction, and his next scan confirms it) “Will skiing ever be an option again?” James may not have the inclination (Howard doesn’t!) but just knowing it’s an option for James, if he wanted to, would be amazing! I am certainly going to live in hope. If there are professional footballers earning their millions, who had Perthes as kids, then I can hope for James to give whatever he wants a go too!
Sweden 2017
Sunny Easter Sunday
What gives me that hope is how amazingly well James is coping with our Cookie walks! We’ve been slowly nudging up the distance. (Slow, being the operative word, as he still walks at snails pace, but I’m pretty certain he’d do that even with perfect hips!) And I just love that I can consider family walks of a weekend, with friends, and explore new places. Something I really wasn’t sure how was going to play out when we decided to get a dog.
On Easter Sunday, we made use of our National Trust membership and headed to Cookham, and followed a 6.5 km/4 mile circular walk in glorious sunshine, blue sky, and a pleasant mix of Thames side pathway, stretches of meadows, and a short steep climb to get some stunning views. I would say James actually probably did an even greater distance if you count the repeated extra runs up and down the hills and slopes, and this definitely marked his furthest distance yet. He did want to sit and rest not far from the car park towards the end, so not sure I would push it any more than that for the time being, but who knows, perhaps a post at a later date in time might be reporting a 10 km walk!?
Good to reflect and remember
Despite having not been anywhere, and the usual chaos of clubs and social events not happening, and the inability to spend time with loved ones outside of the household, the weeks and months still fly by surprisingly quickly. It’s been good to take the time to write this post today as it forces me a to have a small moment of reflection and remind myself of all the good things, the achievements, and everything still to come.
James running because he can!
Still running!
Ice cream at Basildon Park during a mini snow blizzard!
James and naughty owl on a bike ride
One of my fave resting spots
James and his hairy, 4-pawed sister
A difference a year makes?
It’s actually no longer hard to believe that we are where we are with regards to Covid-19, 12 months on, and we’ve still got a way to go yet. I do worry too much is opening back up too soon. It would be a shame to have to go into yet another lockdown, or for the schools to close again. It’s seems impossible to strike the balance. Yes, the vaccination program is progressing, but the majority of the population still need it. But for now, we just have to keep looking ahead, be sensibly safe. Tomorrow, James is going to see his grandparents for a couple of hours, the first time in 6 months. In two day’s time, we’ll have had Cookie for a whole year. Next week, James’ swimming lessons will resume (hoorah!), and beyond that we might even start seeing similar weather to this time a year ago – unlike today!!
12 April 2020 / 2021
Thanks for reading (skimming/glancing/scrolling) to the end. I have set myself a personal challenge in October so stay tuned for more details on that in later posts!
Needless to say, our 6 monthly hip check up in May didn’t happen. Everything had come to a stop including hydrotherapy and swimming lessons. Not that I was wishing to go near hospitals or public swimming pools anyway, but going from being in a pool 3 times a week to nothing for months on end has bothered me, and still does.
As referenced in previous posts, we managed to up the cycling during 2020, actually helped by lockdown and less traffic on roads, and James got a shiny new bike for his birthday, but it wasn’t as regular or disciplined as the swimming and hydro.
We’re guilty of not enforcing physio at home, something I’m going to have to try and crack as a new year resolution, given we’re in Tier 4 lockdown, so the situation isn’t going to change any time soon.
By September and having heard nothing from the Paediatrics Orthopaedic and/or Physio team, I called and asked to get a consultation. I wanted to get it done before November so we had a 12 month check up/x-ray and comparison, and hopefully confirmation that everything was ok. And also before a second wave/lockdown hit.
Thankfully we are ‘progressing’ in the right direction still, with progress now a positive rather than the negative from a couple of years ago. It’s a slow process and with nearly a year between scans, we could see a slightly greater contrast than normal, but it seems there is still more regrowth needed and I’m not clear on where we are on the timeline. How much longer is needed before it’s ‘healed’? Or will it be ongoing until James stops growing? Can it overgrow? I have heard some cases where the ball grows too big for the socket or is misshapen.
The below scans show his right (bad) hip joint compared to his left (good), and a comparison view of his right hip between Nov 2019 and September 2020. Hard to see with the untrained eye, but combined with what the Consultant tells us, we believe we can see it looking more dense, more rounded, and less black stuff!
September 2020 x-ray showing right (bad) hip compared to left (good) hip.
Comparing November 2019 to September 2020How it looked November 2017 during the collapse / fragmentation stage
We’re ending the year not having used the wheelchair or crutches since before lockdown. One upside I suppose of home schooling was that we had the opportunity to manage and monitor daily ourselves his physical activity. The puppy got us walking more and more, building confidence in James’ thresholds, and loving the return to school in September without a crutch in sight. Let’s hope we can continue during 2021. We’ll never know whether the lack of swimming and hydro will have had a negative impact or not, but we’ll just hope we can get back to it at some point in 2021. (Trying to convince Howard that a hot tub in the garden is the next best thing! 🙂 )
Thanks for reading and Happy New Year! Hopefully more regular posts in 2021.
I had been waiting and waiting to write this post, so excited at the prospect of getting our puppy, and then lockdown hit, and here we are on 27 December, determined to get a blog update posted before 2020’s through!
April 14, our long awaited Golden Retriever puppy was delivered to us, very kindly by the breeder, otherwise it was all a bit in the air. Vets hadn’t been able to microchip her and we weren’t allowed to travel to Norfolk to collect her.
Our back garden should have been completely landscaped with new fencing and all the flower beds removed and new lawn laid so it was both child and puppy friendly. It hadn’t even been started, in fact the guy turned up the same day to start replacing the fence panels! It was a nightmare, comical almost (although I was far from laughing at the time), to be settling in a puppy and house training her when we didn’t even have a useable garden for several weeks. I’m not even going to post the before and after pictures, it looks so ridiculous.
Thankfully by end of May we did get the garden done and what a relief and difference that made. Along with sleep deprivation (they say having a puppy is like having a new born baby, it’s so true, up at silly hours during the night and fretting over everything, worried I was going to be a terrible pet owner/parent), home schooling, full time job, no garden, and energetic puppy with socialisation and training limitations, I just about made it to June with some sanity in tact. I refer to May as ‘Meltdown May’ due to the unprecedented number of meltdowns, mostly by me.
I thought it was the best time to have a puppy during lockdown as we were all at home to help settle her in, but the reality was it added to the chaos. Puppies are hard work, and training takes time (I didn’t have). That said, I wouldn’t change it, we’d planned to get her Easter time since Jan/Feb and we all love her to bits. She’s James’ canine sibling / pawsome sister, and she’s well and truly now part of the Cooke family.
Having a dog (or two) has always been on my bucket / to do list so it was only a matter of time, and James had been asking for the last year or two. James hasn’t been confident around dogs so I knew this would be good for him as well as having an extra friend at home. Pets are good company and therapy for all of us.
Puppy sharp teeth and claws phase was hard, with some tears at times, but it is just a phase which thankfully seemed to pass quite quickly. Nowadays, we’re usually shouting at James to be gentle with her, as they both play equally as boisterously with each other. And he’s completely confident now around other dogs too.
My other concern had been around the walking. All that glorious 2020 lockdown weather of course helped. Puppies start off on very short walks and build up around an extra 5 minutes/month which was perfect to just gently and gradually test out how far James could walk. I’m amazed and over the moon to say that we’re up to about 4km now with no aches, pains or limps afterwards. I can only hope this continues. The walks are painfully slow, but I think that has more to do with a 9 year old who’d rather be at home playing PS than it is to do with hip limitations! Cookie is now 10 months old, and I think I can now hope to get both of them on longer walks as we head towards the spring. (And who knows, perhaps quicker paced walks too as the mud dries out.)
When there’s nothing else to do and nowhere else to go, I love that we have at least one outdoor purpose each day, and that’s walking Cookie. It forces me out for a break during busy workdays, and forces outdoor family time at weekends and holidays. Cookie is our one undisputable happy 2020 thing that Covid can’t taint!
Here we are. We’ve made it to Easter, 3 weeks down, and no sign of lockdown let up, which let’s face it, I don’t think anyone was realistically expecting to happen anyway!
The novelty of week 1 quickly wore off and I’ve found the last two weeks hard, only mainly because of looming work deadlines, which were always going to be pressured even without the ‘change of routine’.
The only way around it was to put in extra hours, sacrifice some of my ‘me time/exercise’ and just heads down and get on with it. And that is why I am so grateful for our 4 day weekend topped with some warmth and sunshine.
I’m regularly reminding myself of all the things to be grateful for, and have reflected a lot the last couple of weeks on how privileged I am. Many, like me, are already used to working from home (WFH), and even if not used to WFH, have a nice home in which to find a workspace, and have a garden or outdoor space. But for many others, it’s a lot harder. We have enabled everyone in our customer service centres located in different countries around the world to work from home, and I wonder how many of our agents are coping with the adjustment. Perhaps some in very small homes, with no ‘spare’ space, no outdoor space, with babies or elderly family members to look after, partners also trying to find the space to WFH, whilst trying to still provide a good support service to our customers and partners. And also trying to stay safe and healthy. And of course not forgetting all the key workers who are keeping the lights on for everyone else, and have the opposite of WFH challenges. Like I say I feel privileged on both accounts. I’m with my family, in my home, and surrounded by beautiful countryside.
Highlights for me from the last couple of weeks have included:
Finally braving some road cycling with James! (Not a lot of cars about so perfect time!) James and I ventured out, with Howard staying at home as back up in case of any leg/hip issues. We did a lovely loop, and James did brilliantly. Howard and James even managed the ‘Crazies Hill loop’ which I was super impressed with (yes, a little bit of walking up the steep bit!!) and a very fun downhill home run.
Pit stop
Bike ride
On the road
Off road
Wishing a friend happy birthday with a surprise birthday call from all the girls including those in Madrid and Sydney!
James being our guest star in our monthly virtual all hands at work where he picked five winners out of a hat for a prize draw I was running, and read out their names. He enjoyed it, and others seemed to as well, some even suggesting he join every meeting! Although I discovered afterwards that James thought there were only as many people as he could see on the call, and hadn’t realised there were about another 80 on the call. Perhaps he would have been more shy had we all been physically together. I’m actually really enjoying the more relaxed, informal nature of some of our online calls, as people become increasingly more comfortable with turning their cameras on, and worrying less about appearance, and all the homely, family noises going on in the background.
Nothing really to do with Covid-19, but I do have some lovely colleagues and friends that I work with, and it makes a huge difference, particularly when everyone is having the odd tough day or just needs a work friend to help lift spirits and help push on through. Amazing how you can build such good relationships with people despite hardly ever meeting them in person. Again, I feel very lucky.
Huge kudos to Akela who runs James’ cub group. Another two fun virtual sessions that still had cubs and parents and siblings running around the house to win funny challenges (eg, how many hats can you wear on your head), and singing songs around a collection of virtually shared campfires.
Hat challenge
Campfire
James having his first online piano lesson in place of the lesson he would have had at school. Again there are some upsides. I’ve now met James’ piano teacher, and had some insight as to what happens during his lesson!
It’s Sunday night and as I reflect back on the last 7 days, overall I don’t think it’s been too bad. Perhaps ask me again in week 6 and I may not be saying the same thing!
The main thing is, we’re all still healthy, and no-one in our immediate family has caught the virus. We hope we can keep it that way. We are beginning to hear stories of other families who have been suffering from it (or are simply under the weather anyway, and anxious that they ‘might’ have it.)
I’m not going to lie. Trying to do the home schooling, keep an 8 year old occupied without reliance on TV/computer, and do the day job is tough. That’s definitely going to cause some stress and pressures, and I’m already feeling it after only one week.
But then so are millions of other families around the world. We’re all in the same boat. And technology is a massive help. I’ve also been considering all the upsides. The time I am getting to spend with my son; the money being saved; the jobs around the house finally getting done; and the new activities we are being forced into finding.
We’ll see how each week evolves. Last week we tried to structure each day around our work commitments but ensuring we each had 2 hours allocated to James. Because my work meetings tend to kick in early afternoon onwards, I would typically spend 2 hours with James in the mornings (not necessarily back to back) with one hour being school work, and one hour being recreation (outside where possible). Then Howard would do the same. The goal is to replicate a ‘9-3 school day’ with learning/breaks/activities. No screen time (unless educational or Newsround) until after 3pm. So there has to be some independent self-play time in there too which is a good thing, and James was less objectionable to that than I was expecting.
Highlights included online meetings where the whole of Year 4 is invited; 1;1 online playdates; and online Cubs session. James kicked off the week painting his rainbow of hope (prep time by me to get it all set up and cleared away took 3 times as long as it kept him occupied for but he enjoyed it!), and James playing the piano (assisted by some cool apps!). Without all the usual rushing around, and to keep things varied, I’m driving James to local open space places he’s not been to before and which are remote enough for us to safely get some fresh air and movement. Obviously with his hip restrictions we can’t go on long walks but finding new ‘spots’ to take a short stroll and find new terrain for his remote control car is proving good fun.
I’m going to hi-jack my blog for a while (how long, we don’t know?!) to record our Corona Virus experience. Simply because it’s something unprecedented to the world, and the first major unprecedented event in James’ life. (I would say the other one in my adult lifetime was 9/11). I’m not 100% sure exactly how much he understands what’s going on, and similar to our Perthes journey, I’m hoping he might look back at some point and read some or all of this blog to see how it was for us at the time.
Day 1
It’s not day 1 of the Covid-19 outbreak of course, but it’s Day 1 of all of us being at home instead of school and the office. School work needs to happen, our day jobs need to happen and we need to stay occupied and sane!
I keep reminding myself that we are not in a war-torn country, we’re heading into Spring, the sun is shining today, and I could think of far worse places to be ‘socially distancing’ ourselves or self-isolating than our home, with everything we need, a garden, and technology keeping us very connected.
It’s only the thought that it might be like this until September that makes me slightly anxious! I worry about how to keep momentum in ensuring James’ education doesn’t suffer too much, and the impact on his friendships.
So far, we have avoided being infected with Covid-19 We think! How can you be 100% sure? That’s the bit that makes me paranoid, what if we don’t show the symptoms or only mild symptoms. For now at least I don’t believe we have. And obviously hope to avoid it by keeping ourselves to ourselves, with the exception of essential supplies. Or if someone else in the village needs helps, I have my name down in the village ‘Help Facebook group’ to help deliver supplies if needed.
I know I have missed Rare Disease Day in previous years so this year I made a point of putting it in my calendar, although pertheskids.org has done a great job at reminding the Perthes community as well!
Next year, perhaps I can better myself and actually organise some form of fundraising/awareness raising activity for the day itself. (However, I have been somewhat pre-occupied with organising something else and REALLY hope I can share this on a later post!! Stay tuned!)
However, I hope I have managed to show some support for this important day by socialising it across my work and non-work social media platforms:
International Rare Disease Day is the last day of February every year and aims to build awareness of rare diseases. https://t.co/Wz7RSHIpXJ. 1 in 20 people will live with a rare disease at some point in their life. Please share! Thanks!#rarediseaseday # leggcalveperthesdisease
The Cookes Take on Perthes 