‘The child first and always’ is the motto at Great Ormond Street Hospital in London which is suitably stoic and British.

In the hospital in St Louis it’s ‘We do what’s right for the kids.’ And if you say it with a midwest accent it sounds just right.

Somehow, if you switched the motto’s around they wouldn’t quite work – even though the sentiment is very much the same.

Last night we thought we’d try not giving Rhys the muscle relaxant that stops the night spasms – dosing him up every night doesn’t feel right.

By midnight the spasms were getting going (though in no way as strongly as a few days ago) so we eventually got him to take the medicine and sleep returned.

After we’d done the mornings stretches I moved the furniture around in the apartment a bit. If I got the motivation right (carefully placed haribo sweets or my laptop) he was starting to weight bear through his legs to cruise the furniture – and briefly, very briefly, he made a lunge from the armchair to the coffee table – fortunately without smashing his teeth out. What’s great about that is that his desire to be independent is returning – we just need his legs to catch up with his head.

Over at his physio session today he was clearly fatigued. We narrowly avoided a complete meltdown, and he did OK, but the spark wasn’t really there.

Whether that’s down to a lack of sleep from last night or just the cumulative tiredness from this week it’s hard to tell – probably a bit of both – but it’s a reminder that you can’t have the up’s without the downs.

If I take a step back though and think about how much has happened in the last 10 days it’s not really that surprising that he (and we) are a bit tired.

Anyway, the weekend is here to provide a bit of respite – which means I might even give myself a day off from posting here.

7 thoughts on “Fatigue

  1. “Petit à petit, l’oiseau fait son nid”. A French proverb. “Little by little, the bird builds its nest.” Every little bit helps.

  2. Will miss the updates, but will have to go cold turkey for a couple of days ;0)

    Enjoy your weekend guys x

  3. I send all my love to you guys, Rhys is doing ever so well and as every day goes by he will gain more strength. Keep it up Rhys and keep annoying daddy with the Katy Perry songs!!!

  4. Hi Heal Family
    I am glad to hear that Rhys is still forging ahead. Sorry that you could not go into the hospital to see the freworks but I hope the parking lot rooftop show did not disappoint.
    Please tell Owen that he will need to keep praciticing kicking the futbol because his big brother is going to be ready for competition in no time:)
    You are in my thoughts and prayers – I (we) will be in touch soon.
    ~ Jenna a.k.a the babysitter

  5. Bless Rhys – so much to do BUT so much time in which to do it now that he is regaining his strength. I am certain things will get better as time progresses as he is a determined boy … and it shows!
    You must all be absolutely shattered but thank you for your very honest updates as they give all of us insight into what he (and those nearest and dearest) are going through!
    Take that well-deserved break and draw strength that you are in the thoughts and hearts of so very many people!

    • Thanks for the messages Tessa – speak soon, G

      Gareth Heal, Editor, 07949 254674Follow the Help Heal Rhys blog here Recent work includes:’Welcome To India’ BBC / Keo Films’Facejacker’ C4 / Hat Trick’When Harry Left Hogwarts’ Warner Bros / Minnow Flims

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