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Thread: Newly Diagnosed

  1. #16
    Join Date
    Aug 2014
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    33
    lol she's actually going as Katniss Everdeen this year, and has been growing her hair out specifically so she could have the braid. But we've joked about her soon to be status of Titanium Girl (which is clearly better than Iron Man since Titanium doesn't rust ) or some other superhero moniker. Guess we need to confirm that her surgeon is using Titanium and not steel before we choose her supergirl name lol

    She has her moments, though (we all do), as would be expected. The other night, she realized she wouldn't be able to try out for the school musical she really wanted to be part of (not that she would have been guaranteed a spot). Tryouts will be the day of and day after her last surgery, so no can do. She got upset, and the "why me??" came out, but she moved past it the next day. She already knew she was almost certainly going to miss her second band concert of the year because of the timing of her surgeries and being out of school, but her band teachers promised they'd send home the music for her to work on. If she's feeling up to it by that point (early December), we'll take her to the concert so she can at least be there. I remind myself that things like missing tryouts or a band concert are tiny for us adults, but a huge deal for kids her age when they can't yet fathom that other opportunities will always come along. I'm sure we'll all learn a lot of lessons in the coming months, adults just as much as our kids.
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

  2. #17
    Join Date
    Aug 2014
    Posts
    33
    Quote Originally Posted by jrnyc View Post
    if your daughter still likes Halloween, please tell her for me
    she should dress as Wonder Woman or another super hero...
    because she truly IS...
    she is handling it better than most adults i know of...
    Oh, and I did share this with her; it put a big smile on her face, thank you!
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

  3. #18
    Join Date
    May 2009
    Posts
    3,745
    you are welcome...i meant every word of it...
    she seems brave beyond her years....
    of course she will have some "moments"...she is a super
    hero, but still human...

    i am sorry she will have to miss some special events for the
    time around her surgeries....
    but as the adult, you know the events she misses now
    will be made up for with many more events in her future...and for
    those, she will be standing tall....tall, and straight, and proud.

    i am wondering if she can find a scoli patient around her own age...
    just for someone to talk with, or e mail, who can relate to what
    she is going thru as a young girl experiencing all this tough stuff.
    nothing like the support of someone "in the same boat" who is
    close in age.

    best to you and your brave girl.
    jess...and Sparky

  4. #19
    Join Date
    Aug 2014
    Posts
    33
    Yes, I'm working on getting her connected to some other scoli kids. I've had a couple moms offer to let her speak to their girls, and there's a chapter of Curvy Girls (a scoliosis support group) that meets about 1.5 hrs from us once a month. They're still working on scheduling their meeting this month, and I'm hoping it will fall on this weekend or next (her birthday party is the last weekend). Seems like October is already flying by, and those surgery dates are going to be here before we know it....
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

  5. #20
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Hi Karen. That a severe curve your daughter has. Good luck with her surgeries. My surgeon trained at leathermen spine center. There's this website for girls with scoliosis called curvy girls scoliosis
    Last edited by kennedy; 10-16-2014 at 02:40 PM.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  6. #21
    Join Date
    Aug 2014
    Posts
    33
    Quote Originally Posted by kennedy View Post
    Hi Karen. That a severe curve your daughter has. Good luck with her surgeries. My surgeon trained at leathermen spine center. There's this website for girls with scoliosis called curvy girls scoliosis
    Thank you, Kennedy! And yes, we've seen that site! There's supposed to be a monthly CG meeting not terribly far from us, but we haven't heard back on when they ended up scheduling it. Hopefully we can get to one of those meetings at some point, though.
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

  7. #22
    Join Date
    Aug 2014
    Posts
    33
    Well, we've done her pre-op labs (all came back fine) and met with the surgeon one last time to go over the plan and ask any last questions. It becomes more real every day, I guess. Dr. Campbell was great answering all our questions, showing us a spine model with rods, hooks, and screws, talking about risk for future issues and fusion given she'll have to be fused to L4. While the ultimate risk is hard to quantify due to so many variables, he did say that she had less risk for issues if she maintained a healthy weight and engaged in exercise. That makes sense to me, though I'd kind of figured exercise like running would ultimately be bad for those last couple discs due to the impact forces. He said that shouldn't be a problem, but she's not really a runner anyway, preferring to swim, which is low impact either way. The only question I forgot to ask was about lung functioning since she's having 2 anterior procedures (one to access lumbar and one to access thoracic). She plays clarinet in her school band, so I wasn't sure what to expect in terms of her returning to playing, and I've found conflicting info online. But ultimately, it doesn't change anything in terms of going through with the surgery; it's just that I wanted to know what to expect, so I'll be asking about that while at the hospital. We asked how many inches she might gain with surgery, and he told us the most he's ever given anyone was 3 inches with the average 1.5 inches. He figures she'll probably get a couple. She's grown another inch since we last saw him 10 weeks ago, and she now stands at 5ft even (She came back from measuring her height saying she was 4ft 12" lol). I 'm not sure how she could possibly have gained any vertical height with her curves being as large as they are, but I'm glad for anything given she won't grow much after surgery.

    The nurses at the hospital who did her pre-op labs were great (we're going through Kosair in Louisville), and they were very thorough at explaining all the procedures for that day and what would happen when she comes back.

    She's since celebrated her 12th birthday with a sleepover party, and we've gone ice skating a couple times since she won't be able to do that for awhile after surgery, and she really enjoys it. She doesn't know it, but I ordered her a shirt with the periodic table listing for Titanium. I figured it would be kind of fun, but then I'm kind of a geek Anyway, I think the next 10 days are simultaneously going to be the longest and shortest of our lives.....
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

  8. #23
    Join Date
    Oct 2014
    Posts
    43
    This is my very first post, so forgive me if I do it wrong =) I will tell my story on the correct thread, but wanted to share what helped me when I was diagnosed at the age of 12. My mom supported me in everything, Dr visits, helping me to remain strong, allowing me to cry when needed, but not letting me fall into the "why me" pit for too long that I stayed there. It was a very scary thing, but from what you have posted, it sounds like you and your family are handling it the way that I would think is healthy. While I am currently trying to decide when to have my surgery, my mom passed away a few months ago, and I sure wish she was here now! But I know that she is always with me and will be forever. I myself find that educating myself and this forum help immensely. I just started reading a book that allot on here refer to that is invaluable as well titled "Scoliosis Surgery" by David Wolpert that has been very informative. Keep up the good work, and don't let the guilt of you not noticing bother you. Trust me, that is the last thing that your daughter is thinking about through this, and ever... My parents didn't notice mine either, and until I read that in your post, I never even considered that they should have noticed it. Things happen in due time, when they are meant to be. Please don't beat yourself up over it. Keep the sense of humor, laughter is good for the soul =) Hugs...

    Crystal
    Diagnosed in 1985
    Currently 62 degree curve, pending deciding on spinal fusion or not...

  9. #24
    Join Date
    Aug 2014
    Posts
    33
    Thank you for your kind words and perspective, Crystal. I'll look forward to reading more about your story!
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

  10. #25
    Join Date
    Aug 2014
    Posts
    33
    Well, Girl Child went on her liquid diet today in preparation for surgery tomorrow. Then this evening, the surgeon called, fairly upset, telling us that the hospital informed him there are currently no ICU beds available. He has previously left patients in recovery when there have been no ICU beds immediately available, but they told him they're too full to do that. A nurse friend of mine told me that they've been slammed for weeks with kids with enterovirus and lots of early flu cases. As of right now, the surgery is off, though he's going to keep trying to work something out in the morning. If the surgery only gets delayed until Tues, it doesn't really change any other parts of the 3 phase plan, though if they're that slammed with acute and emergency cases, I don't know what that will mean for the surgeries this Fri or next Monday. Because of the way her surgeries are planned, she'll be bedridden and unable to go home until after that last surgery, so I really hope this doesn't result in extra days (and bills) waiting for ICU rooms to open up...

    Girl Child was really upset (understandably so) after spending the day eating next to nothing and fast with possibly another day of eating next to nothing if the surgery gets delayed till Tuesday. We told her the hospital can't control when they get slammed with lots of sick kids, and they have to care for them. And I do understand that, but it's still so frustrating. We've waited 2.5 months for these surgeries, and I'm pretty sure her curves have gotten worse in that time; she leans more, and her shoulderblade sticks out further. She's grown another inch in the last 10 weeks, and that means her spine continues to curve and twist a little with each passing day making good correction just a little harder with each passing day. I know this isn't the hospital's fault, and there's likely nothing they can do when there's a finite number of beds, space, and staff. But I can't tell you all how frustrating this is. She's been so brave and so strong, and she just wants this to be over with. We all do. I can only hope that a lot of kids get better overnight so we can proceed.....
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

  11. #26
    Join Date
    Aug 2014
    Posts
    33
    Well, we're 2 surgeries down, the anterior ones, and they've been pretty intense. Tomorrow is the posterior one where she'll get her hooks, screws, and rods. For the anterior lumbar, the surgeon said rather than going all the way to L4, he'd stop at L3 and see what happens, because he can always pick up L4 if needed during the posterior procedure. He was actually pleased with how L3 looked during that surgery. During the anterior he commented during surgery that her lumbar section looks really straight. He isn't promising anything, but he revised the consent to reflect that the current plan is now T4-L3 with L4 only if needed. He told us he looks at each case and thinks first, "What would I do if this were my daughter?" and that this has served him very well for the last 20 years. I'm not getting my hopes up too high, but I know in my heart that if he can possibly save L4, he will do it, and if he has to go there, he will do so only because he knows in his heart that it's what he absolutely needs to do to address her curvature and correction. I'm so very glad we have a surgeon we can put that level of trust in...
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

  12. #27
    Join Date
    Oct 2014
    Posts
    43

    Good to hear from you....

    I can't even imagine having to wait for a bed to open up to have a surgery of this magnitude. To know how difficult a decision it is to begin with, and then to finally be down to the day before and get that sort of phone call had to be horrible. Glad to hear that she is doing good with 2 down. Stay strong, keeping you and your family in my thoughts and prayers...
    Hugs,

    hdsluckygirl
    hdsluckygirl@gmail.com

  13. #28
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Karen,

    Great progress! Almost done. It's great that the surgeon is so focused on the fusion length.

    Best of luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #29
    Join Date
    Aug 2014
    Posts
    33
    Thanks so much. He was less optimistic about L3 this morning after case conferencing, but he said he'll still see what he's dealing with once he opens her up. She's back now...went back around 8:30, and is probably being opened around now. This will be a very long day....
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

  15. #30
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by Karen5 View Post
    Thanks so much. He was less optimistic about L3 this morning after case conferencing, but he said he'll still see what he's dealing with once he opens her up. She's back now...went back around 8:30, and is probably being opened around now. This will be a very long day....
    Three surgeries is such a long haul. Two surgeries, one on each of my two kids did my husband and I in. Hang in there. Your daughter's life will get back on track soon.

    You're an excellent Mommy!
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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