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  #11  
Old 17-09-2011, 08:18 PM
Christine Christine is offline
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Default Re: New kid on the block

Hi Chris

Nothing like a good bit of home cooking to fatten them up! That is about the only thing that entices my son to drop in for a visit now - food! He is now 21 and he said to me a few weeks ago he was glad he didn't get my funny back and I said so was I.

I think the meat is probably a good idea. I eat meat only maybe twice a month??? Not much at all. I lost a lot of blood during surgery and took a few weeks to get my colour back. Having a blood test in a couple of weeks to see my levels. Iron is a funny one i.e. too much is bad for you, yet you don't want to be under the normal level. So just keep up the healthy food in general I think. Most of us with scoliosis are a bit lean anyway and could do with a bit of extra to burn off as losing weight after surgery is common. I dropped 5kg which is still off and I am rather liking that!

Ask away here all you want. I was lucky and didn't worry about my own surgery as I had simply had enough of my rotten back, but I did gain a lot from the forum. Didn't even think about what happens so much after as it wasn't going to be any worse than it was.

The surgery is amazing and it will change his whole life.

Great that you are going to have my book in your sunny home for a bit.

Do you have other children?

Christine xxx
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  #12  
Old 18-09-2011, 07:02 AM
MySon MySon is offline
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Default Re: New kid on the block

Hi Chistine

Thanks - yes I have 3 children. Dane is the youngest the other two are girls - Katrina is recently married and Carly is in grade 11 at school. Neither of them had scoliosis. Apparently my husbands side of the family had a very mild occurence of scoliosis - nothing over 20 degrees (so I suppose that doesn't count) worried a little about the boys stories on th post regading pectral excavation - one of Dane's uncles has the sucken chest so I hope we don't have to experience that one too. But just taking one step at a time. All the positives are good - I am trying to be realistic and not forget the magnitude of what we are going into.
Looking forward to the book - thanks heaps.
Chris
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  #13  
Old 24-09-2011, 08:27 PM
Dom's mum Dom's mum is offline
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Default Re: New kid on the block

Hi Chris,
Welcome, but sorry to hear your son Dane needs the surgery too. It is just overwhelming as a parent to see your child go through this. Many a time I lay awake at night thinking it over. I guess we were lucky we felt full confidence in
the doctors and didn't feel the need for a second opinion, the consensus being that if Dom didn't have the surgery he would be in a wheelchair in his 40's. That didn't stop the last minute panics though and I nearly rang the day before to cancel! Ironically surgery was cancelled that day anyway as Dom had a raging temperature.
Beforehand you just want to wrap them in cotton wool (you poor thing with the bike accident). We had Dom have a flu and pneumonia shot. You sound like me with the baked teas etc, we did whatever we could to build him up. The best thing too is to keep the normal routine up until the last, if he does swimming etc keep going until you have to stop. An iron supplement probably wouldn't hurt.
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  #14  
Old 24-09-2011, 08:39 PM
Dom's mum Dom's mum is offline
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Default Re: New kid on the block

Sorry doing this in two parts as I talk too long and get timed out!
Do you have good support around you? I made sure Dom's teachers and friends knew what was going on and they were wonderful. You too need support so hopefully you have some good people around you. Many on the forum will say that the anticipation is the worst, that is so true but unfortunately you just can't help but build up the anxiety, they are our "babies".
It does take them a while to adjust to their "new" bodies. Dom was so pleased straight away with how he looked - he "grew" 5cms but lost 3.5kgs so looked like a gangly baby giraffe. It took time before he got used to doing things the new way, simple things like putting his shoes on or pulling up a blanket during the night. Stuff we just wouldn't think of. They do learn to bend again, just differently. We also had a couple of sessions with our physio to work on his core strength and knees.
If you have any questions please ask, or if Dane wants to talk to another boy I am sure Dom would be happy to (as much as boys talk)
Take care
Annette
PS. I see Dane's surgery is scheduled for 18th October - Dom's birthday, a good omen
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  #15  
Old 24-09-2011, 09:34 PM
MySon MySon is offline
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Default Re: New kid on the block

Thanks so much Annette for your reply - your contributions are amazing!

You understand things so well from your own experiences - I really appreciate your kind thoughts and help.

Yeah boys dont really want to talk much I try to relay things to him - but he is a little annoyed that I am taking a risk with his life. But a good kid and he knows it is the right decision for his long term benefits - just difficult until we know he gets through without too much trouble.

I worry about it being less common in boys and left sided scoliosis - so wonder if there is some other cause. Like you all say this time is a worrying one.

My support network is a bit small - so I have really appreciated this forum. I can do it and I will keep you all posted.

Kind regards

Chris

Quote:
Originally Posted by Dom's mum View Post
Sorry doing this in two parts as I talk too long and get timed out!
Do you have good support around you? I made sure Dom's teachers and friends knew what was going on and they were wonderful. You too need support so hopefully you have some good people around you. Many on the forum will say that the anticipation is the worst, that is so true but unfortunately you just can't help but build up the anxiety, they are our "babies".
It does take them a while to adjust to their "new" bodies. Dom was so pleased straight away with how he looked - he "grew" 5cms but lost 3.5kgs so looked like a gangly baby giraffe. It took time before he got used to doing things the new way, simple things like putting his shoes on or pulling up a blanket during the night. Stuff we just wouldn't think of. They do learn to bend again, just differently. We also had a couple of sessions with our physio to work on his core strength and knees.
If you have any questions please ask, or if Dane wants to talk to another boy I am sure Dom would be happy to (as much as boys talk)
Take care
Annette
PS. I see Dane's surgery is scheduled for 18th October - Dom's birthday, a good omen
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  #16  
Old 27-09-2011, 06:07 PM
Dom's mum Dom's mum is offline
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Default Re: New kid on the block

Hi Chris,
Thanks, I too wouldn't have survived without this forum. Sometimes I think I should just be quiet, but other experiences in life have taught me you are much better off to share if you are lucky enough to have someone to listen!
What you said about Dane being annoyed about you making decisions for his life struck a chord, I think I have written before about Dom saying not long before surgery "I know I need to have this surgery and I will but they are going to put me to sleep for hours and I will wake up and never be the same". That just blew me away and after I put myself back together we had a good talk. I have never lied to my kids with things like immunizations "It is going to hurt but it is for your own good" but signing them up for spinal surgery is on a much bigger scale!
You will get through, sounds like you are doing a good job so far! Once you are out the other side you will pause for breath, wonder how you survived the stress and celebrate how straight and right he looks in his body.
Keep in touch
Annette
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  #17  
Old 30-09-2011, 06:52 AM
MySon MySon is offline
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Default Re: New kid on the block

Thanks Annette, I am saying to him that I am sure it is the right decision but it is his body and harder on him so he should have a choice. He is scared sometimes waking up sick at night. I took him to the beach the other day and he came out of the surf with a bleeding nose i think he bumped it - everything seems to make me worry.

But yes, I will get through and hope to have good stories to share with others going through it. I remind myself there will always be someone better or worse off than ourselves.

Talking with you guys really does help.

I will keep you posted.
Many thanks
Chris
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  #18  
Old 06-10-2011, 10:38 PM
MySon MySon is offline
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Default Re: New kid on the block

Dane's been having trouble emptying his bladder - hospital put him on antibiotics last week but confirmed with GP today it was not an infection.
We also discussed Mafrans and there seem to be a few indicators - he does have the long arms, legs, toes and fingers and a heart murmur.

Have another specialist hospital visit to check it out before surgery in just over a week. I am sure better to do preparation before surgery.

It seems like I am a bit paranoid - but it does seem to make some sense of why the scoliosis developed in my boy.

Anyway, neurologist visit tomorrow and surgery 18th Oct (gulp!!!)

Chris
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  #19  
Old 11-10-2011, 06:36 PM
Hobbs Hobbs is offline
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Default Re: New kid on the block

Hi Chris,
Thought I would introduce myself. I am mum of 13 yr old girl who recently had the spinal surgery T4 to L4 back in July 20th... wow what a journey that is in itself. She has confirmed Marfans so if you have any queries or concerns feel free to email me.
Cheers
Louise
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  #20  
Old 16-10-2011, 09:40 PM
Dom's mum Dom's mum is offline
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Default Re: New kid on the block

Hi Chris,
Just wanted to let you know you and Dane will especially be in our thoughts on Tuesday. Wishing you all the best and look forward to hearing about a great result.
Annette & Dom
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