View Full Version : Not a great day..
24th November 2004, 06:43 PM
We've had a few tears and tantrums today. :cry: Ryan was fine having his mate 'Boris' fitted but he was really shocked when the straps were done up.I think he thought he'd be flapping around in it nice and free.This is on the 'loose getting used to it' mark too not the proper one!He hasnt got the pads in yet either til the 8th of Dec.He just stood there with his bum stuck out sort of bent over not daring to breathe :-o I had a practise putting it on which took me like forever LOL then it was too loose anyway :oops: After strapping him in we brought him home in it for a try out and so he was only actually in it for 20 mins today.. but his poor bod was all red when it came off..is this usual???? All his bones were red as I said he's a tin ribs so has no 'padding' to help apart from his underbrace clothes :woe: He got a bit tearful then as its sinking in this is for a good while yet..which in turn started me off LOL.....I don't need any excuse for a blub at the moment!All has settled down a bit now and 'Boris' is sulking in the corner :D I know things will get better as time goes on and this part I think is going to be the hardest we've faced so far with the soreness and stuff..one good thing tho Mikey has been really good with Ryan today so I can relax on that score for a while :niceone:
24th November 2004, 06:53 PM
Aw shoot... I wish it had gone at least a little bit better for you...
I don't have brace experience, but lots of people on here do and will be able to help in that respect...
Thinking of you and Ryan! (and Boris too... ;-) )
24th November 2004, 07:06 PM
I'm sure some who've worn braces will have some good suggestions as to what to do about the redness, at least in terms of the skin. It's good to hear that Mikey's been good with him :-) :hug: and hopes that he'll settle in to it ok.
24th November 2004, 07:09 PM
aww....im so sorry to hear that...I didnt have a brace, so i don't know what to say. I just hope it gets better for you all!
24th November 2004, 07:17 PM
thanks guys I'm hoping Jonny will have some tips for us as he's been there ..bought the teeshirt..LOL literally!
24th November 2004, 07:39 PM
I wore braces from the age of 9 until I was 16. The first 2 weeks in a new brace were always horrible! You have to build it up. Make him wear Boris each day a little bit longer and a little bit tighter. He'll get used to it eventually. Don't worry! :hug:
24th November 2004, 08:04 PM
I never actually wore a brace but when we first found out about my scoliosis at age 15 we talked about it. I then went to a bone specialist and they told me I was done growing so it was useless. But before they told me that I was really upset. I was just going into high school and so I was very self conscious. But I never did have to wear it. I almost wish I could have though cause then maybe my curve wouldn't be so bad and I wouldn't have as much pain.
Well I hope it gets better for Ryan and you and boris. I think it may not be fun now but in the long run I think he will be thankful.
24th November 2004, 08:21 PM
Aww, I'm really sorry that today has been hard for you guys. It's always hard adjusting to something new, no matter what it is, and it will take some time to get used to Boris. I'm sure the sore skin is typical of starting to wear a brace and I hope this goes with time. Persevere and I'm sure it will be worth it in the end.
Big hugs to you both :squeeze: and a thumbs up for Michael :niceone:
24th November 2004, 08:59 PM
I had a brace for a year before sugery. I can tottally relate to how he feels, apart from i was a bit oolder and i guess i understood a little better what it was all about. I had pads in mine so i cant suggest much for the redness. But do as Liv said :)
24th November 2004, 10:11 PM
I had a brace for about a year too.... I HATED IT! Omg i like barely even wore it too...hehe...
25th November 2004, 05:49 AM
I've never had a brace (had casting when I was an infant, but I was too young to remember it now, though), so I can't really offer you any suggestions to make this transition smoother. I think Liv's idea of working up to it over a week or two-week period sounds perfectly reasonable. I hope things get better for you. Is there some way you can stress the importance of really trying this (without using scare tactics in case he ultimately has to have surgery, of course)?
25th November 2004, 08:09 AM
:squeeze: Thanks so much for all your support :D We are going to do as Liv said and do a little bit at a time after school for a week or so then a bit longer at the weekends.I have to try for fulltime in around a month or so he said (as he'll just get used to the brace then get the pads in!) I took Boris in to show his teacher yesterday and she cant believe how tiny Ryan is LOL honest this brace looks like it should go round a leg not a body :rofl: I bought a bottle of surgical spirit to harden his skin so do you think I should start dabbing that on him now??
25th November 2004, 10:27 AM
Sorry to hear it didn't do so well for you :squeeze:
I wore a milwaukee brace from the age of 6 until 11. I remember it being really uncomfortable at times. I had padding in some areas where my skin got sore but I did get kind of used to it eventually.
I agree that you have to build up wearing it gradually, so that Ryan can get used to it. Make sure you get it checked regularly because of course Ryan is growing all the time and it can be adjusted to suit him.
Although my brace was incomfortable and I cursed it many times, I know now that it did help to straighten my spine, so persevere... it'll be worth it :-)
The surgical spirit sounds like a good idea, I'd start using it now.
25th November 2004, 10:37 AM
Thanks Annie :D Ryan's been pretty accepting of why he has to wear it so I don't have the rebel in him just yet LOL Its more the thought of being sore that he can't take and me..well I'm just a wimp I can't stand to see my boys in pain I go to pieces :oops: I'll start with the surgical spirit tonight before he puts it on I think,it doesnt smell too strong so hopefully he'll be ok with it..might disguise some of his other windy niffs he gives off :glee: Dee :D
25th November 2004, 11:10 AM
The tears and tantrums are only to be expected.It's horrible for a kid to feel all excited about getting a brace and then to have the disappointment of reality.Whatever you do, don't give in to the tears.Even if it tears you to bits, stay tough and make him wear it.It's in his best interest to defer surgery as long as possible for him.
Have you had a date for your MRI scan yet? That should be a very valuable test for him.
25th November 2004, 11:25 AM
Aww poor Ryan :squeeze: I wish I had some fantastic words of advice but I've never had a brace either. :( I do think it's great that he's called Boris :D I hope Ryan adjusts soon.
Feel free to cry on our virtual shoulders anytime, that's what friends are for :squeeze:
25th November 2004, 01:32 PM
I was shocked the first time I was strapped into my brace. It was so tight I didn't think I would last 10 minutes in it, let alone 24 hours. It just about took my breath away.
I ended up wearing the brace for 6 years. Ryan will get used to Boris - check out some of Jonny's posts about what types of shirts to wear under the brace. I just used cotton singlets and I had methylated spirits rubbed onto my sore spots to toughen up the skin in those places.
25th November 2004, 11:12 PM
Sorry to be late here... he'll definitely get used to it, and the best way to harden skin for a brace is naturally by gradually building up Ryan's hours in it, but whatever you do, at the pressure points there'll be redness and soreness - there's nothing you can do about that, I'm afraid.
It didn't take long for my brace to stop being strapped to me and start being part of me.
Just make sure his undershirt is pulled nice and flat, without creases, or they become unbearably sweaty and itchy and leave trenches in your skin ;-)
26th November 2004, 12:14 AM
:D Yay a much better try today..well after I finally managed to strap him in LOL! We did a whole hour (which I'm going to stick to for a few days) Just one red bit under his arm and he said it was not too sore :D Think I may have pulled his undies crooked there so it rubbed :oops: so gang we are getting there!! :jump: I need to get him a different chair or some cushions as his back aches but would that be cos the brace is making him use his muscles differently?? His skin was fine after he was released from captivity so a much better day today all round just wanted to say a big thankyou for all the help and advice :monkey: :clap:
26th November 2004, 09:17 AM
Woo! Congratulations on a better day, and a full hour in the brace! We're all behind you guys. Tell Ryan we're proud of him and to keep up the good work. *smile*
I imagine the ache is to do with the altered shape his back is in while in the brace. It's pulling muscles into a new position and holding them stretched there the whole time he's wearing it (imagine the state your muscles would be in if you started a new stretch exercise and held the position for an hour the first day). But, again, I've never had a brace, so I'm not certain that's what it is... I defer to the brace veterans.
26th November 2004, 09:30 AM
:D thanks Kimberly,yes thats what I thought it may be to do with his new posture in the brace??His skin so far looks great so thats a good thing.He wants to put it on as soon as he gets home from school again tonight,which we find works well so then he can have a soothing bath afterwards and his proper dinner.Another thing I never thought of til my mum mentioned it is Ryan sleeps on his back normally but thats where his brace straps up.I remember reading someone said sleeping on their tum helps when theyre sore but not sure if he'll take to that,so would it be of any use to get a 'squidgy' quilt or something to put under him to cushion him or would it not make much difference?Sorry for all my questions everyone :oops: while I was typing this we got a phonecall from physio for his first session he starts next week! Still no news about the mri tho.......
26th November 2004, 11:23 AM
I can't tell you if the quilt/cushion will work or not, but it seems like everything would be worth a try while you're in this period of adjustment.
Sarahs Mum aka Chrissy
26th November 2004, 11:53 AM
:niceone: I do hope things go well from now on, at least part of the battle is over.
Tell Ryan Sarah has left a post in the under 18's section he might like to read.
Best of luck!!
26th November 2004, 06:01 PM
They don't deliver terribly quickly (when they say up to 28 days they mean it), but House of Bath have a whole great range of mattress toppers of all different types and depths, from egg crate foam to deep hollow fibre ones. You can probably get them elsewhere, but that's the widest range that I know of in the UK. A doubled up duvet, or a nice thick sleeping bag will probably give a good idea of whether it's likely to help though. Great news to hear that things are going well with Ryan getting used to the brace though :-)
28th November 2004, 07:57 PM
I'm glad things are beginning to go well! My straps were on the front of my brace, and I've always slept on my stomach. I never had a problem with them digging into me. It could be different with them on the back... I think my back's certainly more sensitive than my stomach. Good luck!
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