Independence Day

Tomorrow is American Independence Day and in the downtown area there’s a big concert, fairground and fireworks all under the famous St Louis arch.

Normally in a situation like that I’d want to be right in the thick of it but with Rhys just out of hospital today it’s not going to be a smart thing to do.

There’s something odd about leaving hospital after an extended stay. When Rhys was born he spent 2 months in hospital. I thought I’d feel triumphant the day he came home but instead you think ‘shouldn’t we stay a day or two more.’ Essentially, you’ve had so much support you don’t want to leave it behind. ‘Hold onto nurse for fear of something worse’ I believe the saying goes.

The same thing happened today. If anything happens the nurses are there in a heartbeat with clean sheets, pain killers a glass of water etc and you don’t really want to leave that bubble of care.

Once Rhys had been discharged at midday he wanted to go to the playroom, the roof garden, the cafe – but not back to the apartment – I think he felt the same way.

Before discharge he had another physio session. Again it took a lot of cajoling to get him out of his pyjamas, into a buggy and onto the mats.

Right now there’s 2 things going on for Rhys. First is the pain and discomfort from the surgery which pain killers can control to a degree. The second is the weakness in his body.

Prior to surgery Rhys’ legs were stiff, but he would prop himself up on that stiffness and it was to a degree functional. With that stiffness (spasticity) gone the underlying weakness in his muscle groups is revealed. And boy, is there weakness there.

Here’s a clip of him walking about 5 supported paces in physio today. (Annoyingly my phone filmed it sideways.) You can see that he is bearing very little weight through his legs as Nicole is taking most of it. On the upside his legs aren’t scissoring, they aren’t ‘in toeing’ and his feet are reasonably flat.

Back in the playroom Rhys had made numerous hats and found a Karoke machine (yes – they had a Grease CD). We left when they closed and got back to the apartment at about 5 ish.

By that point in the day he was whacked and just wanted to watch a DVD. Over the coming days he’s going to need a lot of support (literally) and a fair bit of encouragement to  keep him going (Haribo).

So yes, tomorrow is July 4th, independence day a little way off yet.

11 thoughts on “Independence Day

  1. Amazing again Gareth – you can really see the effort he’s putting in to lift his legs which shows how much muscle strength is actually underlying. I realise the physio’s holidng his weight but it’s the leg lifting that’s bloody impressive! His foot plant is so strong too, no tippy toes for Rhys!! His walking looks incredible and with more physio, you can already tell what a success this whole mission has been. Go RHYS!!!!! xxxxxxxx

    • TBH it’s tempting not to post videos like that as it’s clearly hard work. You’re right though Tan – when you break it down there’s good things happening in there. Lots of graft ahead. G x

  2. Well done rhys, G and sally i can see a big improvement already in his feet and legs. Hope it feels like all the pain he has gone is worth it. Take care and see you all soon. xxxx

  3. Rhys what a star. Once again he is going for gold. The changes seen already are incredible.
    Todays blog gives a whole new meaning to Independence Day. This could be the start of even
    greater independence for Rhys. Well done and lots of love.xxxxxx
    Nain and Taid

  4. I quote ” A journey of a thousand miles starts with but one step ” you’ve started your journey Rhys, with your usual determination, grit and humour, plus a little bit of help from mum and dad
    and a handful of brilliant medics. Willing you on.

    Love Marion & Gerry X

  5. Wow Rhys you are doing amazing! Very proud of u and sending big hugs and kisses all the way from Wales! X x x

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