A Carys Update: Febuary 2018 Is This the End of AFO’s?

Carys's AFO's.

I haven’t posted about Carys for a long time, not because there was nothing to tell, but because progress has been a long slow plod of repetitiveness and, I know it sounds awful, but yes, monotony; not particularly interesting to read, and achievements which might seem minor and trivial to the outsider, although spectacular to us.

This week, though, we had some great news: Carys will be AFO free! At least, during the day-time. What does this mean? No more clunky, heavy plastic leg braces strapped to her lower legs. Carys needed AFO’s for several reasons: for support, as the muscles around her ankles were very weak; to stretch her calf muscles, as they are very tight, and she cant’ make a 90 degree angle at her ankle like we can; also to correct her pronation.

However, this meant she was unable to walk naturally, and in effect, made it harder for her to learn to walk. She started wearing them when she was just three years old… she’s now twelve, and  despite the added obstacles, learn to walk she did!

Then last month she started refusing to walk, and started crying and trying to sit down as soon as I strapped her AFO’s on. I was worried, as she only had them a few months, so I left them off and arranged to have them checked. It turns out that a recent growth spurt meant she had outgrown them already. Whilst we waited for a fitting appointment, Carys demonstrated how strong and sturdy she is without them, and how much better she could walk in her normal shoes.

Carys An Update February 2018 Is This the End of AFO's?

No AFO’s! Regular shoes! I never expected this… I had been led to believe Carys would need AFO’s all her life. But don’t get too excited. There is a down side… isn’t there always?

There is a chance that Carys’s muscles could tighten, and her pronation worsen, which could lead to hip and knee problems in the future. So to counter this, she will have to wear leg braces at night, but not a regular set, oh no… she will need knee braces too, so that she can’t bend her legs, because if she sleeps with her legs bent at the knee it will counteract the stretch she needs to her calf muscles.

Carys inspecting my assignment notes.
Carys asleep on my lap when she had the Aussie flu.
Carys in her Christmas jumper.
Carys looking cute and thoughtful.
Carys home from school and waiting for her snack.

How do most people sleep? Curled into the foetal position. How does Carys often sleep? On her belly with her knees tucked up under her and her bum in the air, just like a baby. Hmmm… I foresee some sleepless nights ahead, for her and for me! We are very lucky that Carys is a good sleeper, and she loves her bed. I hope this continues once she adjusts. If it doesn’t work out, she will have to go back to regular day braces, and I really don’t want that to happen.

I’ll keep you posted. Meanwhile, I’ll be updating you soon on the brushing, Carys’s overnights stays at respite, and the new wheelchair.

If you would like to reblog this post, please use the PRESS THIS button. Hugh has an excellent post on the PRESS THIS  feature, if you want to know more. ☺

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 62 Comments

 Posted on 2nd Feb 2018 by

 Category: Life With A Special Needs Child

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62 Comments on “A Carys Update: Febuary 2018 Is This the End of AFO’s?”

  2. Ali, what wonderful news. I will be praying that she is able to keep them off during the day and will be able to sleep with braces at night. Love and hugs to both of you.

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  4. I inclined to hope for the best. There is always strain and difficulties when soemthing changes, but there is also so much potentialities.
    I’m sending all my good wishes to you and your family. Hugs.

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  5. Good to read news of Carys, Ali. The general trend appears to be positive, which is great. Makes the issues I’ve had with my children over the years (and still!) seem trivial in comparison. I hope you’re proud of yourself as well as Carys.

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    • Yes, parenting is tough! Thankfully, Carys is keeping well… although she’s right grumpy today, and I can’t seem to do anything right! 😀

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  6. This is absolutely amazing news. I am so pleased for Carys and I will keep everything crossed that her legs don’t stiffen and you get full nights sleep ❤

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  9. Oh I am beyond happy for you both, even if there are later consequences, that’s a huge accomplishment!
    Any progress is great progress!

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    • I know, it’s great isn’t it? Maybe Carys will find the confidence now to get moving on two feet of her own accord rather than seeking a hand to hold, or resorting to crawling on hands and knees. 😊

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  10. ah cute! She’ll soon be at the Bash herself.. those leg thingies look grim from here but if she can get used to them I imagine they’ll help. Good to see her still smiling – hope her mum is too. Oh and do tell Conor, Ireland have no hope in the Six nations, won’t you?

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    • Haha! Sacrilege! I wouldn’t dare! 😆 Cheers, Geoff… I’m certainly smiling after reading your comment!

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  11. She has such a wonderful smile – what a sweet gift. Yay on the end of AFO’s. What freedom. I hope Carys adjusts quickly to sleeping with straight legs. I sleep on my back, straight-legged. It can be done!

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  13. I feel for Cary’s and for you. I have worn AFOs for more than twenty years to counteract foot drop left over from Guillain Barre Syndrome. They are no fun. I am an adult and do not have the special needs that she has. Love her and hold her – I am sure you do. She is adorable.

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    • She is a sweetie, Jim, but she has her moments too. 😆 I’m sorry to hear you have been wearing AFO’s for so long. I’m sure that is tough at times. They must be so hard and uncomfortable to walk in, and getting shoes to fit over them is a nightmare. I know you can get special shoes made, but they are sooooo expensive, and choice and style is very limited. Carys gives the best hugs in the world and she’s sending some your way! 😊 Thanks for taking the time to comment, and all the best to you.

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  15. That’s brilliant news! You must be chuffed to bits 🙂 AFOs seem so uncomfortable…Nick only uses his for riding now… and he’s teaching himself to use crutches. (The black eye and stitches he acquired early in that adventure have just about healed 😉 )
    I do hope Carys can get comfy enough to sleep with her night braces.

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    • I am delighted, Sue. It was quite unexpected. Yeah, the night braces… maybe it sounds worse than it is. Many children manage perfectly fine with them. As for that son of yours, he’s never happier than when he’s pushing the boundaries and conquering another challenge, is he? Although he could do without the black eye and stitches… ouch! Hope he’s ok. Give him a hug from me and Carys, and have one yourself too. 😊

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    • Hi Rob, thank you for the re-blog, appreciate it! Blog traffic takes time and persistence to build up. I’ve been blogging 5 years this year, there is a lovely supportive community of writers on WordPress, isn’t there? Where do you live? Are you going to the BloggersBash?

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          • Siddharth Gambi from India saw the re-blog on In the Raw and liked it. So, you’ll likely be having young friends in India. How about that?

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            • Haha! I am surrounded by 18-20 year olds at uni every day! They can be fun, and at times frustrating to be around! 😊 I wish I had half their energy!

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            • I always liked the old Association song, “Enter the Young:” “Yeah, they’ve learned to think / More than you think they think / Not only learned to think but to care / Not only learned to think but to dare / Enter the young, yeah, here they come!” It’s very 1969. YouTube it, it’s a bash :-p

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            • Well it’s true, to a certain extent. The kids at uni accept all kinds of minorities and differences… although they are incredibly ageist! 😂😆🤣 And although they seem uninterested in their studies, many will go on to be the innovators of the future.

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            • The song says they go on to win a prize that’s never been won. Yeah, at 19yo we think we know everything already, and it grates against us when we’re told to slow down or even to shut up and listen. I’m torn between my inner 19yo sophomore and my 51yo pooped-out alcoholism veteran. Of course I am both. Good Luck, Ali 😀

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  17. Pingback: For a Friend – In the Raw

  19. That’s excellent news Ali and of course it may not be that she has the problems which will require night braces. She’s really going from strength to strength now.
    xxx Massive Hugs xxx

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    • Thank you, David. Yes, many children cope really well with the night braces. I just worry, I guess. Carys is a tough little thing. She has always fought all the odds and won. She’s not going to be defeated by a little thing like this! Hugs to you! 😙

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  20. That’s wonderful news! Even if there is a downside. There’s an awful lot of ‘might’ and ‘if’ in there. She just might not get the muscle tightening at all. I’m crossing all fingers and toes that she manages to sleep. Sleepless nights play havoc with everything.

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    • Hi Colin. Most of them are not that accessible. It would be very hard to get Carys to St Dympna’s shrine, for example. She’s getting too big and heavy for me and Conor to lift, and even her strong muscley big brother finds it hard to lift her. The White Calf’s Well at Tara might be ok though. 😊

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