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Thread: So glad I found you guys!

  1. #676
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Quote Originally Posted by Pooka1 View Post
    That is an amazing correction! Did Dr. K do that one also? If so, together with your son's correction, Dr. K is an artist.
    Yes, Dr. Krajbich did Donovan's surgery. Amy, Donovan, Elias and me all travelled down to Portland together back in January and both boys were assigned to Dr. K as he does the more complex surgeries apparently. I keep in contact with Amy all the time on facebook. :-)

    Add: I am going to keep putting the aloe gel on Elias' scar as he says it feels good but whether it really makes a difference, who knows. I think that's funny about your daughter's dress. She sounds like a character, haha!
    Last edited by Elisa; 05-18-2011 at 03:28 PM.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  2. #677
    Join Date
    Nov 2010
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    British Columbia
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    918
    Ed, when you're right you're right. I just received an email from one of Elias' teachers who has been following along via my blog and she too does not think it's a good idea to have him go back to school for the month of June as there tends to be a lot of "bumping & jostling" going on and I think with it being so close to the end of the school year it will only get worse. So it's settled, he isn't going back. She is arranging for some work for me to pick up and bring home to him instead as well as I will meet with her soon to discuss Elias' needs for high school. She's such an awesome lady!

    I picked up the Bio Oil as it was on sale at London Drugs for ten bucks so I thought what the heck. It smells nice too. I also put some on his stretch marks. I don't have any stretch marks to try it on *gloats* but I'm going to try it on the stress lines under my eyes mostly caused from this whole ordeal, lol.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  3. #678
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Elias's back and shoulders look so straight and even, Elisa!

    His scar will definitely keep fading with time. Make sure to keep it out of the sun this summer. He should probably keep a shirt on all summer, even at the beach, maybe even wearing a swimming shirt in a pool. I also found a very thick titanium dioxide cream to be helpful for covering and protecting Alexander's scar if he insisted upon taking off his shirt in the sun. So far this year in the Northwest though, sun hasn't really been a problem, has it?
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  4. #679
    Join Date
    Nov 2010
    Location
    British Columbia
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    918
    Hey Laurie, the weather up in these parts has been so dreary. I think we've had maybe two or three days of sunshine and that's it. I always feel bad for those who take off camping expecting it to be nice and it isn't. I am a total fair weather camper and I absolutely hate being outside when it's wet, windy and cold, bleh.

    Yes, Elias looks much straighter now and his shoulders are much more even. He still does have a small right rib hump though but considering what he had before, he looks amazing. The oil is helping to take off the rough skin where his staples were pulled out and it keeps it all so nice and supple so I'm going to keep applying it. He is so not a beach/pool person, never has been. Hates the sun, heat and even the light so there's no chance of him taking off his shirt, lol.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  5. #680
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hi Elisa,

    I'm glad the oil is helping and I know what you mean about the lack of sunshine. However, Alexander was just in Victoria, BC with his school's marching band and he actually came home, for the 2nd year in a row, with a really bad sunburn on his face and hands. Last year, we didn't really think about sunscreen because it had been so dreary up until the trip to Victoria. But this year I went out and bought three different kinds so he could choose the texture and type to bring and apply. But he "forgot" to put it on until after the parade on his 2nd sunny day there. I just hope that this year he doesn't blister... He's not really an outdoorsy kind of kid and he hates sunscreen so there's not much I can do if I'm not there to remind him to put it on...

    Alexander still has somewhat of a rib hump too I guess but I can't really see it on Elias.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  6. #681
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Aww, Victoria, my hometown. Miss it at times but am glad to be somewhere quiet. It really is a beautiful place to visit though. Too bad your son got so sunburned on his face. Actually we had a day or two with sunshine recently and of course I overdid it b/c I was desperately missing the sun and of course I sat out too long in my backyard soaking it all up and I too burned my face, mostly my forehead as well as my chest and left arm. No chance of doing that again any time soon b/c it's back to being cloudy, boooo.

    You probably can't see Elias' little rib hump in the pics b/c the shots are taken straight on and it's only when he turns to the side that you can kinda see it and that is only with his shirt off. When he's wearing a shirt I honestly don't think anyone could tell he had a major scoliosis. Heck, not a lot of people knew he had a 110* curve with significant rotation before his surgeries b/c he'd always wear such baggy tops.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  7. #682
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918

    5 weeks post-op.

    ~Five weeks post-op, oiled up, and he’s getting some meat on those bones & bum!
    Attached Images Attached Images
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  8. #683
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
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    3,263
    It looks to me like Elias's scar has faded quite a lot since the last photo. Perhaps there's some thing to this Bio Oil!

    I didn't use anything on mine and it faded much more slowly but it's quite pale now, after 2 years.

    Is Elias walking a lot? Does he have a good appetite?

    Does he have to pinch himself to realise it's over and he's now got a straight back?
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  9. #684
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    Nov 2010
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    British Columbia
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    Quote Originally Posted by JenniferG View Post
    It looks to me like Elias's scar has faded quite a lot since the last photo. Perhaps there's some thing to this Bio Oil!

    I didn't use anything on mine and it faded much more slowly but it's quite pale now, after 2 years.

    Is Elias walking a lot? Does he have a good appetite?

    Does he have to pinch himself to realise it's over and he's now got a straight back?
    I think the Bio Oil is making his scar smoother at least but if you can notice a different from the last pic then that's great. I'm around him too much to tell I think. The real reason I like the Bio Oil in all honesty though is b/c I use it as an excuse to check out his back twice a day to see how good it looks and I get to touch it too. I'm not telling him that though b/c it would creep him out, lol.

    He doesn't walk a whole lot other than around the house and yard but we have gone out for breakfast and did a bit of shopping last Saturday and he was fine. Yesterday we had a bit of sunshine and bbq'd some wings and we all hung out in the back yard and he cruised around, played with the cats and then sat and read his book for a while. I'm trying to get him outside more so he can get a bit of colour as he's very pale still.

    His appetite is great, similar to what it was before the surgeries/traction and we figure he lost about 8 pounds during the weeks away but I can tell he's put a few pounds back on already especially on his upper body and face but his legs are still kinda scrawny.

    Yes, he seems to be thrilled with his new shape but I'm the one pinching myself all the time to see if it's for real.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  10. #685
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918

    Date with Shriners on June 1st.

    Touched base with Bill M. today after work while in front of the grocery store. It’s still on that me (and possibly Elias) will attend the last meeting of the year at the Shrine here in Campbell River as a guest(s) to tell ‘our story’ about Elias’ scoliosis, how nothing was being done about it with BC Children’s Hospital and our five week stay in Portland Oregon while he had two surgeries and halo/weight traction to correct his 110 degrees spine. Their wives will be there too and there is a dinner and of course wine I’m told. I wasn’t going if wine wasn’t served, lol.

    I am honoured to be asked to be there and talk about our journey as I have no idea what I/we would have done without the help of these fine people. I look forward to visiting with them to let them all know how things went and how well everything is going now. Definitely going to bring some before and after pics/xrays of Elias’ spine to show them all. I know some have been following along the blog but others haven’t so I’m sure they’d appreciate the story and it is a wonderful story. These guys and their wives are awesome!
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  11. #686
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    I totally agree that the Shriners are a very special breed of people. I try to give them donations whenever I can. They were ready to fly us out to PA for an appointment at the Philadelphia Shriners before Alexander's surgery but we chose to have the surgery with a local surgeon instead.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  12. #687
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by Elisa View Post
    Touched base with Bill M. today after work while in front of the grocery store. It’s still on that me (and possibly Elias) will attend the last meeting of the year at the Shrine here in Campbell River as a guest(s) to tell ‘our story’ about Elias’ scoliosis, how nothing was being done about it with BC Children’s Hospital and our five week stay in Portland Oregon while he had two surgeries and halo/weight traction to correct his 110 degrees spine. Their wives will be there too and there is a dinner and of course wine I’m told. I wasn’t going if wine wasn’t served, lol.

    I am honoured to be asked to be there and talk about our journey as I have no idea what I/we would have done without the help of these fine people. I look forward to visiting with them to let them all know how things went and how well everything is going now. Definitely going to bring some before and after pics/xrays of Elias’ spine to show them all. I know some have been following along the blog but others haven’t so I’m sure they’d appreciate the story and it is a wonderful story. These guys and their wives are awesome!
    I got goosebumps reading this. Over the past several years, I've made friends with many local Shriners and even a few of their wives. They truly are a special breed.

    I'm sure it will be a very enjoyable evening. Sometimes I'm not sure who gets more out of these things - folks like me and you, who get to meet the people behind the incredible care our kids have received; or the Shriners (and their wives) because you will see how much they LOVE hearing about the kids they have helped.

    Somebody once told me that once you become a Shriners patient, you become part of their family.

    I have found that to be true.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  13. #688
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,225
    Hi Elisa...

    Over the 20 years I've been involved with scoliosis patients, I've heard hundreds of stories. Most of them are, unfortunately, pretty boring. Not so for Elias. If you were local, I'd definitely ask you to come speak at our next spine conference. Elias story would definitely be inspirational, especially for other scoli parents. You should put a PowerPoint presentation together and go on a road show!

    I think I mentioned to you that one of the UCSF fellows this year is from Vancouver. If you're interested, I'll make sure he knows how to contact you. One never knows where it might go.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  14. #689
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918

    6-week xrays.

    Took Elias for his 6 weeks x-rays this afternoon here in CR and handed them the ‘order’ to send a copy down to Portland as well as a copy to me. I went to go into the room with him like I did before and the tech wouldn’t let me in. I told her I had a few questions and she kept me at the door and said I could ask there and I told her never mind and went and sat down in the waiting area.

    I’ve never been told that I couldn’t be in the room while he had his x-rays so either I’m thinking she is just a snot, or she was miffed b/c I took my kid out of country for surgery and now we’re back looking for follow up stuff to be done and results are to be sent to the US. I have no idea really why she wouldn’t let me in but it was odd that I wasn’t allowed in the x-ray room as that was not an issue before.

    Now, I could have put up a fuss and said that he was underage (14) and that I insist that I be present but I just let it go. What I really wanted was to stand behind the glass and see his x-ray being taken behind the Cobb grid. I didn’t get to see that but I will be sent the x-rays on CD as well as the report which is fine.

    This is a pic of Elias’ back/incision exactly 6 weeks post-op. He is doing really well and doesn’t have much in the way of aches and pains but the first thing he does every single morning is head to the hot shower after waking up b/c he says that it helps a lot with the muscle tension.
    Attached Images Attached Images
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  15. #690
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,472
    Elisa

    Nice to hear that Elias is doing so well. Hot showers are pretty much “standard procedure” for us....

    I wouldn’t worry about this x-ray tech at all....snot or not, it doesn’t really matter much. Again, x-rays are pretty much “standard procedure” for us...

    I did have to get pushy with a tech once on the phone as I wasn’t going to accept the “we only forward to the Doctor” story on my CT discs. I’ve had records lost years ago, it usually happens when a Doctor retires and the office moves. Its obvious my records hit a dumpster at some point. It no wonder insurance premiums are shooting through the roof down here.

    That would be great if you guys could come down to UCSF...for the scoli conference... I agree with Linda, Elias’s case was not boring, to keep it simple. Put it this way, lets just say it was far from the standard “elective” scoliosis case that is so common.

    Ed
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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