Duchenne is exhausting me right now. I thought appointments might start slowing down by now but it is endless at the moment. How wrong was I!
Hugo was seen by his physiotherapist last night. Firstly, his steroids are making a positive difference. He is quicker on his feet than he was when he was first assessed, he can get up from the floor easier and doesn’t struggle with the stairs as much. Fantastic news! However, it would seem these days that we can’t have a positive without a negative. Perhaps I should see that the other way round, we can’t have a negative without a positive? I’m not sure. Anyway, Hugo is also developing a curve to his spine. His physiotherapist thinks it’s more noticeable than it was 3 months ago. This means yet more appointments for my little warrior. He needs to go to a spinal clinic for measurements to provide a baseline of the curvature. Following that, he will need spinal x-rays once a year, which can only be done in Nottingham. He also now needs a sleep system for bed which involves strapping him up in a straight position with wedges between his knees to align his hips and spine.
We will do whatever it takes to keep Hugo mobile for as long as possible. Whilst it will be a challenge to get a 4 year old child to sleep with leg splints on and strapped into one position, I’m positive it will make a difference and help him. It is normal for Duchenne children to develop curved spines, due to the lack of muscle strength surrounding the spine. However, this usually doesn’t happen until a few more years down the line, around 8-10 years old. Most Duchenne boys have rods inserted into the spine between 10-12 years old to prevent the spine from curving. Some Duchenne boys have an operation to straighten the curve once it has developed but this brings with it many complications for their weakening respiratory and cardiac muscles.
My concern now is that this process has already started for Hugo, at only 4 years old. Will he need spinal rodding earlier? Will it be too late for him? Is this a sign that he will be wheelchair dependent at a younger age than the average 10 years old? As usual, we’ve been given more bad news but no real answers. We are not due to see the consultant until Christmas time so we will be sitting on this until then with unanswered questions.
And with this brings yet more appointments, more specialists to see, more tests for Hugo. I now feel like we are constantly waiting for the next ‘new’ thing to be thrown our way. It’s becoming very frequent. With every appointment, comes a new problem which requires more investigations, more equipment, more medication. I’m so glad Hugo doesn’t have any real understanding at the moment, and I’m dreading the day that he does. I just want him to grow up like any other child, without a care in the world. I hate that Duchenne will make that difficult.
This evening I was hit by a whole new panic, a thought that I desperately wanted to shift but just couldn’t fight it. Hugo was playing with Lego, something he has become really into lately. I don’t stop Hugo from doing anything and we actively encourage him to continue doing everything, even the things that aren’t necessarily easy for him. However, while he was sat building a chicken out of Lego, I suddenly thought that one day he won’t even have the strength in his fingers to put the bricks together, should I be encouraging him to do something that he won’t be able to do in years to come? Will it be more difficult for him to suddenly not be able to do the things he loves? I told myself to stop being stupid, he needs to enjoy these things while he can. But that’s just Duchenne all over, it’s relentless, it’s cruel, it snatches away the simplest of things. However, I can’t allow it to control everything, we just have to sit and wait for it to happen and deal with it at the time.
This week may have thrown some more problems at us, but as usual, the determination that Hugo has carries me through. I’ve said it before and I will say it again, he is my hero.