When a fight becomes worth it.

I feel like I’ve hit a blank with my blog recently. I’ve been too busy to really stop and think about things. Last week flew by, I was poorly, Jasper was poorly, the days all merged into one. A couple of things are coming up which are playing on my mind and I just seem to be endlessly making phone calls to hospitals and community health services. 

Last Friday however was a good day. Hugo was finally awarded higher rate mobility component of DLA. It’s taken a long 13 weeks to get it, but we were originally told his appeal wouldn’t be heard until January. However, they overturned their decision after reading our appeal and realising that they didn’t have any grounds for refusal, at all. It took me 3 days to write that appeal and I am so glad I went through the pain of detailing every tiny piece of information about Hugo and his struggles. It’s a well deserved win, but something we should never have been refused in the first place. We can now begin the process of applying for a car, one which will be easier and more comfortable for Hugo, and one which can fit his mobility pushchair in (which by the way is big enough for an adult to sit in)! 

Danny and I went to look at cars over the weekend and have decided on a new Nissan Qashqui. As we were filling in the paperwork, a wave of guilt hit me. There we are finalising our choice of new car, which we wouldn’t be having if it wasn’t for Hugo’s diagnosis. Right then, it dawned on me that I would do anything to swap the shiny new car for Hugo’s health. But then, I remembered that there has to be some good in this whole situation, and Hugo deserves to travel safely and in comfort. He’s entitled to it, so we’d be silly not to take up the opportunity. 

This week, Hugo finally has his sleep study to measure his oxygen levels. I’m not particularly looking forward to spending the night in a children’s ward! I can’t imagine I will get much sleep, or even Hugo for that matter! We are then in Sheffield on Saturday to see the ENT specialist. We also have flu jabs to contend with! 

It’s also Hugo’s first parents evening in reception on Thursday. I am so proud of how he has settled into full time school and can’t wait to see some of his work! He has turned into such a confident little chatterbox over the last few weeks! 

So, normal family life seems to be resuming at last, even though it is now filled with appointments! We are all very excited about legoland in 2 weeks time and we’ve had some amazing donations into Hugo’s fund lately. Overall, it’s not been a bad couple of weeks. 

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One thought on “When a fight becomes worth it.”

  1. That was a battle you shouldn’t have had to fight, but well fought anyway, it is Hugo’s entitlement, this sort of beurocratic battle shouldn’t have to be fought by those already fighting a cruel condition such as Duchenne….xxx

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