As I revisit my blog before this year ends, I also realise it was May since I last updated it! At that time, I reflected back on 2018, it so it seems only right that I now reflect back on the year that’s about to close.
As always, the year flies by, and I’d say it’s been a fairly normal year filled with the usual day to day life, busy weekends, and fun-filled family holidays. Thankfully I can say it’s been uneventful when it comes to Perthes.
We’ve had two scans/consultations this year, one in May and the latest one in November. To our untrained eye, it’s sometimes hard to see much difference when comparing the scans each time, but we are encouraged by words such as ‘consolidation’ and ‘going in the right direction.’ It’s such a slow process, but at least the ‘big black bit’ in the scan (that should be white/bone) isn’t getting bigger!
We need to stay positive and nurture the re-growth (reossification) as best we can, knowing that we still don’t know what the end result will be. We know the ‘neck’ will be shorter, and therefore James’ right leg will be shorter than his left, but to what extent? We don’t know how well the femoral head will grow back and what shape it will be. How close to/far away from ‘a round ball in a round socket’ are we going to get? And depending on how it grows back I guess will depend on what other treatment or surgery might (or might not!) be needed. Still so many unknowns, but like I say, we are going in the right direction, and we’ll take that for now!
The above scans are from November, with the third one showing a comparison of November (left) to May (right).
Continue as we are
James continues to swim twice a week, with hydro-therapy at the hospital every Friday. Remembering and finding time to do physio every day at home is a constant challenge. I provided his teacher with his exercise sheets and sometimes they find a way to incorporate them into PE sessions. Getting James into more of a self-managed routine is something I will try once again to re-ignite using some ‘New Year resolution’ tactics I think!
Cycling is also still good, but I don’t feel we get him on his bike enough, and I also want to get him cycling more independently. At some point, it would be good to get him road wise too. I feel challenged by several factors – time, weather, hills (we can’t get in or out of our village without tackling a few small hills!) and generally not knowing what his limitation is (when is too much/gets too tired/causes pain). One thing I started doing this year was to put James’ bike in the car, drive to a local park that is flat, with lakes that he can cycle round with me jogging alongside (or behind as he gets speedier!). So it’s win-win, as we both get some exercise that way, and it’s fun, especially when I challenge James to not miss any puddles and to see how muddy he can get! Next step is probably to invest in a bike rack so we can put all our bikes on, find a good spot and start building up stamina, distance, confidence and maybe start tackling some roads too?!
This summer we did a variety of things rather than ‘big’ holidays abroad, although we did have a couple of weeks in Sweden. We got our camping fix in Norfolk as well as being proper tourists in London, staying up there for a few days, taking in some of the sights, the Science Museum, James’ first proper theatre experience (The Lion King, amazing!) and I think the highlight for all of us was Thames Rockets high speed rib ride on the Thames. Getting around wasn’t a problem, we had the wheelchair with us and walked just about everywhere. Some of the tube stations are sadly not accessible but fortunately James is weight-bearing and can hop out whilst we deal with stairs or escalators. I must say, for others with greater accessibility needs, and parents with kids and babies, it must be a nightmare. Anyway, a few days in London only touches the tip of the iceberg, so I think we’ll definitely be visiting again as there’s just so much to see and do.
Proud moments
We’re often proud of James of course, but I want to call out a few proud moments from this year. The first was when James moved up from Beavers to Cubs. I’m so pleased he’s enjoyed Beavers, earning lots of badges, and I think he’s enjoying Cubs even more, which is great! I constantly worry about the social impact of having Perthes and Cubs provides a fun and safe environment to get social interaction, form friendships, and achieve more badges! We need to be mindful of the activities that get planned, but so far so good, and we’ll just do whatever is needed to make as much possible possible! ‘Motion is lotion’ as my chiropractor tells me. Whilst we need to avoid high impact activity, we still need to keep James active in the right way to burn energy, and build muscle and strength, and also retain a sense of normality.
The other proud moment was when James brought home the ‘Star Fencer of the Week’ trophy. Fencing is one of the clubs that his school offers up, and one he was interested in doing. I wasn’t sure at first, so I spoke to the coach and explained Perthes and decided to let him try it. If there’s no pain or limping, then I guess it’s ok. He really enjoys it (except for the fact that it’s at 07:45 before school!!).
School holiday clubs can also be a challenge because so many are high impact sports based, but I discovered a new one this summer at the Wokingham Waterside Center and we gave it a go. Activities include different water skills such as kayaking, canoeing, raft building, dragon boating and stand-up paddle boarding (SUP), all so much fun! When I picked James up, all his clothes, socks, shoes, everything were wet through, and he had a big smile on his face as he couldn’t wait to tell me about falling off the paddle boards into the River Thames! He’d had fun and I also think a great sense of achievement to say he’d been swimming in the Thames!
So all in all a good year! And speaking of swimming in the River Thames, stay tuned for my next blog to find out what Mr Cooke Senior achieved this year in support of Perthes.
The Cookes Take on Perthes 