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.
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.
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.
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This is such lovely news, Ali. I’m so pleased that everything is going forward rather than backwards for you all. Big hugs to Cerys and you.
xx
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Thanks Hugh! 💕
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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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That’s fantastic news!
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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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Thank you, lovely Sarah. 💕 Hugs to you. Xxx
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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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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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Thanks Sacha! 😙😊
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Woo-that’s wonderful! Let’s hope she never needs the night braces at all, but even if she did, this is still a win. An amazing day for you 😀
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Thanks Nick, it is great news. We are very happy jyst now. 😊
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My admiration grows. 🌹
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Lol! 😆 She doesn’t know it, but she’s an amazing little girl. 💕
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Funny how little angels never seem to know how amazing they are 💜💜
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True. And its one of the many things I love about her… she never feels sorry for herself, and she’s feisty and a strong personality. She’s vety cheeky, too. 😂
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Bless her and she is very lucky to have you as Mum and the
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And the rest of the family too 💜
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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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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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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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Thanks Diana! We’ll just have to make sure we wear her out during the day so she can sleep through anything at night! 😂
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That sound like fun. You’ll all be sleeping well. 🙂
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Love this update and I look forward to more. Love her thoughtful look 💕 I love the way she keeps fighting and being strong.
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Thanks Lucy! 💕 She is a tough little thing, for sure. 😊
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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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I hope it works out so that Carys doesn’t have to wear the AFO’s. It sounds like she would be much more comfortable without them.
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Thanks Rachele. She is much happier without them. We’ll see how she gets on with her night AFO’s.
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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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Thanks, Ali… our children continually surprise us, don’t they? No matter how big they get. Hugs x
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They do indeed! 😊😙
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I reblogged this to my “In the Raw.” It doesn’t get much traffic, but we all do what we can.
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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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I’m on the West Coast of the USA. Hadn’t heard of the BloggersBash. When and where?
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Oh… lol! Its in London in May, a bit too far to travel at short notice, although we have had people come from the US before. 😊
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Makes me wonder how many American yokel bloggers there really are on WordPress 😀
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I’m pretty sure there is a US BloggersBash too, but I don’t know anything about it, I’m afraid.
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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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Fab! I look forward to getting to know them. 😊 Thanks, Rob.
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You are very welcome. I also directed Shreya’s attn to it. She just turned 20yo. These kids are a gas :-p
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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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Of course you are, and that’s the advantage you have… you can choose as it suits you. 😊
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Pingback: For a Friend – In the Raw
Thanks Rob! 💕
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Small improvements are always fantastic … and they give renewed courage.
A big hug to Carys, but also to you!
Serene weekend 🙂 claudine
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Thank you so much, Claudine! Hope your weekend is happy and fun! 😊
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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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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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I can be a bit pessimistic at times! I guess its just preparing for the worst. I call it being realistic. She may be perfectly fine, as you say. We will have leg stretches to do with her every day too, and the school will also help with that, so it could work out really well. She’s had AFO’s so long now, they almost seem part of her! 😂
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I know you can’t afford to be unrealistic. Just take the bright spots when they come 🙂
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Thank you. I will. 😊😙
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🙂
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Thank you for your update, Ali. As an aside, have you thought of doing mother-daughter pilgrimages to various wells. As you know there are plenty http://www.holywell.seomraranga.com/holywellsireland.htm
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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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