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  #51  
Old 14-02-2011, 10:32 PM
Dom's mum Dom's mum is offline
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Default Re: Countdown to surgery

Hi all,
Another update
Dom has has his checkup and surgeon was really happy with his progress, early signs for the bone graft are good and he was pleased with how he looks, joking with Dom about how bad he looked before. Dom was disappointed he can't play table tennis as he had been and is only allowed to swim or ride an exercise bike. He will probably have to have surgery again in his 40s as his being a lumbar scoliosis, which is apparently the most difficult his one remaining lower disc will wear out. Thankfully that went over Dom's head as his mother is doing enough worry about that already.
We go back again in April and will see a chest surgeon at the same time about his pectal excavation. Dom is really not keen on this surgery after going through one but we will at least know what he is looking at and find out the best timing for that. Sure makes that tonsilectomy when he was three look easy!
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  #52  
Old 14-02-2011, 10:43 PM
Dom's mum Dom's mum is offline
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Shoe insert to make up for leg length difference is going well-once he was straightened he really noticed this and was standing with his knee bent to accommodate this. Orthotics get fitted tomorrow -ligament laxity has worsened and he was rolling to the inside of his feet. Physio fortnightly to strengthen his stomach muscles, stretch his hamstrings and do some work on his chest.
He went back to school well and is coping much better than his mother! He was patting my arm the first day telling me everything would be okay. He made the comment that he feels he has matured, he sure has and I am so proud of him and his attitude. He will happily show anyone his scar-perhaps that is a boy thing? He also commented that apart from his chest he is really happy with his body now and feels really good about how his back is.
He is doing so well you tend to forget until I see him struggling to put his socks on or pull his quilt up on his bed once he is in there. His older brother has been very inventive working out ways he can do jobs around the house so he is still doing his share!
So Stage 1 completed. We now start the round of tests for his older brother and then perhaps I will breathe?
Thanks again everyone for your care
Annette
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  #53  
Old 14-02-2011, 11:08 PM
caysula caysula is offline
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My goodness Annette, how are you handling all of this? More surgery for Dom and then his older brother too? Honestly you are a superwoman. I'm glad Dom's doing well and adjusting to his straighter life. As for the scar I think it's an accomplishment and they should be proud to show it off. My daughter to is happy to show people and has worn low back tops or singlets on the few occasions we've been out, she loves the attention and has no problems talking about it. It's great seeing peoples faces when they see the scar, it's only now that they understand the enormity of scoliosis surgery.
take care Annette
Sue
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  #54  
Old 15-02-2011, 09:02 PM
Jen Jen is offline
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Default Re: Countdown to surgery

Scoli patients win the "my scar's bigger than your scar" competitions, hands down!

Great to hear the kids are doing so well. I am sure this business is far harder on Mum than on the kid. Annette, I agree with Sue, you are Super-Mum, with all you've had to go through.
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  #55  
Old 15-02-2011, 09:39 PM
Dom's mum Dom's mum is offline
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Hi Sue & Jen,
Isn't it great our kids are proud of their scars rather than wanting to hide them? Imagine if they ever get together, it will be like show and tell! Also handy for days like today when the lady at the chemist told Dominic how lucky he is - yes, I am lucky but look at this, see if you would feel lucky. How condescending she was.
Super mum? Yelling mum this morning when trying to get every one out of the house. I know it is just the sleepless nights waiting to get through Andrew's testing. Not as bad as it seems, his scoliosis is mild and shouldn't need surgery, it is just the testing for Marfans that has me anxious. Harder too as he is 18 and much more aware.
Dominic went well today with his orthotics. Made the comment though that he thought everything would be over with the surgery but it just seems to keep going. His attitude is beautiful but I might see if the school counsellor will have a chat to him. Such a vulnerable age.
On a lighter note this whole experience is certainly getting me some credit card award points!
Cheers Annette
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  #56  
Old 10-04-2011, 08:56 PM
Dom's mum Dom's mum is offline
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Hi All,
A quick update, sorry been busy and slack lately. Dominic is doing really well, so well that he is nagging us about being able to do things that he isn't allowed to do! Finding it a bit hard as his friends have forgotten that he has had the surgery and not making allowances for him not being able to be involved. We can't complain as they have been wonderful and supportive for so long and they are 15 year old boys!
We are off to Sydney on the 18th and 19th for a consultation with a chest surgeon about his pectal excavation and then spinal checkup. Not rushing him back in to surgery but we need to know what is best for him and at least this way he won't be wondering, we will either be planning for another surgery or having a bit of a break.
Oh, the school counsellor did finally have a chat to him last week, Dom was rather disappointed. After questioning him about his family and home life she concluded the session! Said he was welcome to come back and have a chat another time if he liked. We will pursue other avenues if needed!
Andrew's cardiology appointment revealed he has a rounding in his aorta. Not severe at this stage but something we could have done without. Unfortunately makes the genetic possibilities much more likely. Taken me a while to get my head and heart around that.
Will update on Dom when we return from Sydney
Annette
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  #57  
Old 11-04-2011, 01:56 PM
Jen Jen is offline
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Good luck Annette. Sounds like you have quite a load to carry right now. But it's great news about Dom. Another scoli success!
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  #58  
Old 22-04-2011, 08:13 PM
Dom's mum Dom's mum is offline
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Grrrrrr, once again it has timed me out, so here we go again!!1
Sydney last week for spinal checkup. Four months postop and going well, bone graft growing slowly but surely. Dom got a small victory with being allowed to play table tennis but still no running or jumping.
Had a consult with a chest surgeon about his pectal excavation. What a dilemna, from being told that the surgery would be physically necessary to now it isn't but it could be justified on psychological grounds. Dominic's is severe but he says his heart and lungs have sufficient room - the heart has moved to accomodate. He does his best to talk the kids out of it as is is pretty brutal his other advice being "keep your shirt on for the rest of your life". The decision has to be Dominic's due to his age and if he decides to go ahead with it the ideal age is now and he could fit him in in the public system at the end of the year. The procedure he would is called the "Nuss" procedure and because of Dom's severity he would probably insert two rods. Said he wouldn't get a perfect result as Dom isn't even on either side - but we aren't looking for perfect just liveable. Unfortunately he couldn't put us in contact with anyone who had had the procedure although he has done about 50 of them.
Dominic is confused, said he would have happily had it done if he was told to do so but now the decision is his it is much harder. We are walking a very fine line between letting him talk but not influencing him. Don't you wish you had a crystal ball?
Just makes me love and admire him all the more for what he has been through and how he copes. Our kids are just amazing, aren't they?
Annette
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  #59  
Old 22-04-2011, 10:18 PM
sueham sueham is offline
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Default Re: Countdown to surgery

Hi Annette
Glad to hear his spine's going well. Poor kid though having to make that decision, I feel for him, it's easier when there's no choice isn't it.
Sue
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  #60  
Old 04-05-2011, 05:56 PM
Dom's mum Dom's mum is offline
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Thanks Sue.
Have hit the web again and found a cardio thoracic surgeon in Sydney who seems to have a bit of experience with PE to get a second opinion from. Luckily we got in in June so not too long to wait. Hopefully then the decision will be easier. I am sure people think we are mad or doctor shopping but we just need to look after him the best we can.
Annette
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