It was almost a year ago that the doctors broke the news to us that Miss T was likely to have Juvenile Arthritis. It came as a shock. Having been through it as a child myself, I realise that it perhaps shouldn't have been such a shock but it was.
She was lucky to receive a formal diagnosis soon after that so that treatment could begin.
We have so much to be thankful for. I wrote about that recently in a guest post for Head Over Wheels. But there are also times that have been tough. It's been hard to see her in a lot of pain at times. It's been hard seeing her take so much medication including weekly injections and regular blood tests to check for serious side effects.
It's been frustrating to find that each time we tried to reduce her naproxen, the left ankle would swell again and so we would have to re-start the naproxen again (The ideal scenario is to cut it out completely and for the methotrexate injections to keep the swelling and pain at bay).
Whilst we have encouraged her to keep active, there has been a very fine line between keeping mobile and overdoing things whilst the joint has been swollen as that could cause damage and pain.
Last week we went for her physio appointment at Great Ormond Street. She has been doing intensive physio excercises since our last appointment in December. And the hard work has paid off. The physio was really happy with her progress. Her legs are strengthening and more importantly the swelling seems to have finally reduced - Hurrah!
With that good news it felt like we'd been given the green light to encourage her to do that bit more than she had been doing. For a while we've been restricted to visiting places where her wheelchair can follow because she was prone to having sudden bursts of pain and would then need to sit and rest. But yesterday we braved a little winter walk in some woods. We left her wheelchair at home and Miss T did brilliantly and had a super time.
I was grinning from ear to ear as this is the sort of adventure we had missed over the past year - being able to get properly muddy in the woods.
I'm hoping that the pain stays away so we can continue with little adventures like these!
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Poor Miss T, what an awful thing to have so young. You must have to grab the good days with both hands and make the most of them. A little fun in the woods sounds a perfect way to spend some time as a family and enjoy nature. A rope swing is always a popular find along the way. I hope you have many more days out like this without too much discomfort for Miss T. Lovely to see you back on #CountryKids
ReplyDeleteShe's doing so brilliantly this week - we are delighted. x
DeleteSo glad things are improving for her. It must be so tough on you all, like have a toddler around for longer than you'd bargained for. And so hard for her to be in so much pain. Thanks for the update as I was wondering how she was. xx
ReplyDeleteShe has always been so brave with it even when the pain is at it's worst. Thankfully I feel like we have turned a corner so we are really hoping that she will continue to improve from here on. x
DeleteSo sorry that Miss T is going through this, thank goodness she is having some pain free days when you can all relax and enjoy family time x
ReplyDeleteShe really is doing well at the moment - long may it continue. x
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