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RugbyLaura
15th June 2007, 10:50 PM
Hi All,

This horrible Scoliosis rollercoaster continues. And I need a hug. Immy went to see Mr Cole today. Her curve has progressed to 38 degrees. 10 degrees in 6 months, 6 degrees in 4. I know it's subject to interpretation, etc. But there is a pattern here. Anyway, It seems that her scoliosis is progressing rapidly (in this time she has only grown about 2cm and is still only 133.5cm). She is going to need surgery but Mr Cole wants to put this off for as long as possible to "buy her inches". In the mean time we have to put up with bracing and a huge change to her lifestyle.

I know you'll all say it wont be that bad, but it's been pretty awful so far and her dance WILL be affected.

I'm sure I'll feel brighter tomorrow, but it's so hard to stay strong when my heart is breaking for her.

Laura

Sealy
15th June 2007, 11:03 PM
Laura,

I'm so sorry to hear the news! Was Immy still fitted for the Spinecor brace and if so, what kind of correction did she get? Don't despair, there's still hope! Here are some hugs :squeeze: :squeeze:

Amazed Jean
16th June 2007, 01:21 AM
Laura, I'm so sorry. I am not going to say it's not so bad. When children are involved it's always toughest on the Mom. Wish I could give you a hug...instead I'll just send good thoughts. Immy will still dance - it may take her longer to go on stage but I'll bet if she really wants to she'll accomplish whatever she wants. Just encourage her all you can and watch her blossom. This is going to be much harder on you than her. Have your tears in the shower and keep smiling at her. We are all here for you.

jennie
16th June 2007, 08:00 AM
hi,
it's horrible isn't it. So a big hug. :squeeze:

GillyG
16th June 2007, 12:56 PM
Poor little love, it must be so hard for you to watch her disappointment, but try to remind her that the dancing will happen, she may just have to wait a while longer. I can honestly say I have every confidence in Mr Cole wanting to get the best outcome for her in the end - it's just the waiting that's so hard. Give her lots of reassuring hugs from me.

:squeeze: :squeeze: :squeeze:

Gilly xx

RugbyLaura
16th June 2007, 01:46 PM
Thank you to all my wondersul SSO friends

We are all feeling much better this morning - even feeling a little sheepish at my overreaction last night. We were tired & disappointed, I suppose we all go to these things hoping for the best.

Gilly - I thought Mr Cole was fantastic! He was so honest, genuine, caring & knowledgable. I trust him completely and am extremely grateful to everyone for suggesting him.

Jennie, so sorry to hear Emily's latest news.

Laura X

stana29
16th June 2007, 02:53 PM
Hi there,

I am sorry to hear about your daughter's scoliosis progression. I think we are in a very similar situation. My daughter Jessica is 5 and her scoliosis progressed from 20 degrees to 37 degrees in six months. She developed scoliosis as a result of a surgery to remove her tumor wrapped around her spine. She will now have to wear a Boston brace jacket in two weeks time and we don't look forward to this at all. I hope this will stop from the spine progressing.

Good luck to you,

Stana

Amazed Jean
16th June 2007, 10:50 PM
Ok I'm going to be Grandma right now. I AM SO PROUD OF ALL THE MOMS HERE! God love each and every one of you. I am so impressed with your tenacity and courage. Never be afraid to cry, whine, rant, scream whatever here - we are all here for support!

RugbyLaura
17th June 2007, 07:40 PM
Hi Stana,

I'm sorry to hear about Jessica's problems. I hope she's a happy & healthy little girl now. Where abouts are you based? Have you thought of trying SpineCor? The latest results appear very good and Immy is currently finding it very easy to wear.

Laura X

GillyG
17th June 2007, 09:26 PM
Hey Laura, great to hear Immy is finding her brace easy to wear, I would have thought that would make compliance so much easier, thereby giving more chance of successfully slowing down her curve progression.

Oh, and I'm glad you liked Mr Cole - he's definitely one of my favourite people!! :D

Gilly xx

Nicki
18th June 2007, 04:12 PM
Hi Laura

I have only just seen this thread, I am sorry that your visit to Mr Cole wasnt good.

I agree with Amazed Jean, it is so hard for us mums. I hope Immy wasnt too disappointed, I know that Lucy bounces back quicker than I do from the scoliosis rollercoaster - I hope that Immy has too.

Speak soon
Nicki x

scolioscott
18th June 2007, 04:40 PM
Laura and Immy

I'm so proud of you two - you are both doing well. I always feel loads worse when we come back from the hospital, but with each day that passes, you pick yourself up and cope with the latest news. Also, I find the more visits you have, it takes less time to pick yourself up afterwards. You're all right though, the kids bounce back far quicker than we do - their acceptance levels seem far higher than ours - perhaps we could learn something from them. If only.

H 8)

RugbyLaura
18th June 2007, 08:38 PM
Hi All,

Immy has named her brace "George" and is completely accepting of it. Not a murmur of complaint when she has to put it on. What a star! Wearing it is really not too bad, certainly there is some loss of flexibilty and mobility. She tends to walk as though she's done something in her pants! The only problem so far is the 2 very sore chaffed bits on her knicker line between her legs. Ouch!

I don't know if I'm imagining it , but she looks straighter already, even when it's not on. Anyway, it's just such a relief to know that we're doing something positive now. You're right, we've all bounced back, Immy faster than the rest of us. The first thing Noah (8 year old son) said this morning was "How's George?"

Life is good again!! (thanks guys)

Laura
(Helen - I will email tomorrow morning)

kidz taxi
18th June 2007, 10:27 PM
Glad to hear Immy is coping wearing her brace, and think its great she has given it a name :niceone: hope you can get something for her sores maybe someone from hear can recomend something. :niceone:

Amazed Jean
19th June 2007, 04:11 AM
I am sitting here cracking up laughing. So Immy named her brace George? I 'm giggling because when we were in high school ( you know way back in the dark ages) that's what we called having our periods. "George came for a visit." Well it sounded better than saying menstruating or saying you were on "the rag". I promise to never look at a brace without thinking that wearing one is just about the same amount of fun! Glad things are easing up for you and Immy!

jennie
19th June 2007, 06:42 AM
Hi! so glad it's gone so well...when em gets sore in a new brace, we ring up and get some spongy plaster stuff,,its about 8" by 6" that we can stick inside the brace to make it softer, I'll try and find out today what its called..! I think em feels invincible in her brace! she was banned from rugby in case anyone broke their fingers on it! :spin:

andrea
19th June 2007, 12:38 PM
It's really good to hear of all the kids doing so well in their braces. They really are an inspiration to new mums/dads and kids coming to the boards looking for advice and reassurance that things won't be too bad. Keep it up one and all!!

Sealy
19th June 2007, 01:41 PM
Originally posted by RugbyLaura@Jun 18 2007, 01:38 PM
Hi All,

Immy has named her brace "George" and is completely accepting of it. Not a murmur of complaint when she has to put it on. What a star! Wearing it is really not too bad, certainly there is some loss of flexibilty and mobility. She tends to walk as though she's done something in her pants! The only problem so far is the 2 very sore chaffed bits on her knicker line between her legs. Ouch!



Laura,

You are one funny lady!!! :rofl: Deirdre doesn't walk that way in the spinecor and I'm thinking the reason Immy is walking like that is because of the sore spot on her inner thigh which should clear up soon! :niceone:

It's great to hear she's adjusting well!!!

RugbyLaura
19th June 2007, 04:49 PM
Hi Friends,

Not wishing to bore you all with the petty details of our lives but there may be people out there (as I was a few months ago) reading forums to find out any and all scraps of information. Anyway, I just wanted to tell you that Immy had a fab day at school. Not a single problem. Infact she was doing gymnastics on the playing field at lunch time and was delighted to discover that she can do all her gymnastics moves whilst wearing George!! I must admit I was rather sceptical about their claims but am now a convert. Currently, we LOVE Spinecor. She has been home for over an hour now and has not asked to take it off. She also sleeps like a baby in it.

Lets just hope it works too!

Laura X
By the way, Immy will be 10 on Thursday so should I stop posting in this room as she'll no longer be Juvenile?

GillyG
19th June 2007, 07:31 PM
It's never boring to hear how kids are coping with their braces, and it must be really reassuring for other parents who still have to get to this stage.

George sounds brilliant, eh? Let's hope he also does an excellent job of keeping her curve stable - or at least slowing the progression - while she gets through her next growth spurt.

Sending hugs for Immy.

:squeeze: :squeeze: :squeeze:

Gilly xx

scolioscott
20th June 2007, 08:08 PM
Well done you guys! I'm so pleased she got on so well at school with George.

We look forward to meeting George!

H

RugbyLaura
20th June 2007, 09:26 PM
Hi H,

Blimey you've been busy posting tonight!! George looks forward to meeting you too! Actually I think the honeymoon period may be over. But it's still good, just not great (fair enough). See you on Sunday!!!!!

Laura X