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  • How do I put a quote in a blue background?????
    Stephanie
    like this!!

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    • Originally posted by gerbo
      ....I know a man who does know

      Gerbo,

      You know you're the most popular man on this forum! Admit it!

      Canadian eh
      Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

      Comment


      • ok, highlight by going over it keeping left mousebutton down and then press the speech-bubble button, which is on the right.

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        • I don't know if you remember this, but it was originally my husband who found this site. As soon as I got involved, I kicked him off. But he was also the one who researched and found the Spinecor website.
          Melissa
          From Bucks County, Pa., USA

          Mom to Matthew,19, Jessica, 17, and Nicole, 14
          Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

          Comment


          • Yes, I do remember Melissa!

            I guess we hear from moms all the time - but when a dad posts, I guess it makes a lasting impression on me
            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/

            Comment


            • Stephanie,
              Jamie never really complains of pain. She does get stiff if she lays around for a long period of time, but as soon as she gets up and moves around, she is fine.

              Sherie,
              Hang in there. I'll tell you like I told Melissa, spinal fusion goes in stages. Stage I is the worry and stress before surgery; Stage II is the long wait in the hospital until your child is out of surgery; Stage III is the initial recovery from surgery; Stage IV is some times the hardest-this is when the kids feel great, but are still very restricted-mom and dad have to constantly say no you can't do that-we worry about them over doing it; Stage V--is one year post-op and we are told everything is great and they can get on with their lives.

              Melissa,
              Driving has never been a problem for Jamie. I've taught her to use her mirrors and rely on them since it is hard to turn around as far as she would need to and still stay in her seatbelt. I'm glad she had her surgery before getting her permit because that way she didn't have to re-learn how to drive.

              Yes, my girls have off school for the first day of deer hunting. It's been like that for a long time. When I was in school, so many kids took off school we really didn't have class, so they started giving us the day off. In fact, my girls have the Wednesay before Thanksgiving off and don't return until the Tuesday after Thanksgiving. You know where I live. Maybe it depends on the county we live in? I know there are alot of hunters in my area. Oh, well, we enjoy the long Thanksgiving break.

              Mary Lou
              Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

              Comment


              • Hi , I too had been offline for a couple days (we were out of town for my great grandmother-in-law's funeral..104 1/2 years old; hope my kids get his longevity genes!)

                Anyway, I am really really happy to read these posts because we all do share so much - we share the BIG things, despite differences on opinions on some of the details. Thank you Milesmum for bringing this up - it made me tear up and nearly every post after had me nodding my head in agreement because you are all articulating thoughts and fears like nobody who is not going through this could understand.

                Melissa, my heart goes out to Nicole - I hope you are very pleased with her abilities to dance a year from now. You may have picked up in other posts that I pay close attention to it also since , although young, dancing seems to be my daughter's physical activity of choice. Another story I meant to tell you, which isn't directly relevent, but helps a little. My friend's friend had fusion surgery and went on to dance professionally on broadway. it wasn't ballet, but it's something! In fact, getting her phone number from her friend and talking to her is on my to do list (not on the top because now I'm trying to figure out what treatment is most likely to help us avoid it - a stage or two behind)...but I should give her a call sooner to find out what she feels her flexibility is. I forget, I believe Nicole does ballet, right? Is she involved in tap/jazz or anything else also? Which is her favorite, if she has one?
                daughter, 12, diagnosed 8/07 with 19T/13L
                -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
                -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
                -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

                Comment


                • couldn't remember what else I wanted to say so went back to re-read.

                  Mary Lou, I'm so glad that you can now rejoice in your daughter's ability to do the things she loves, but my heart also goes out to her for what she had to go through and what she had to miss to get there. Scoliosis su**s, doesn't it?

                  Maria, I believe you are right. I have felt that most of the people reading and posting on these boards are more likely the people who don't blindly accept their doctors' advice for treating scoliosis and all have a bit of the fighter in them...

                  which is why it has TOTALLY driven me nuts when people do say things like "it could be worse" and "at least she isn't dying" (Milesmum, I guess I"m not the only one who got those comments from well meaning people, but it really made me feel so isolated instead because they just didn't understand. In hindsight, I'm guessing a lot of you probably got comments like that). Also, when I tried to convey the seriousness of the battle ahead and potential bad outcomes, people would say "you can't think about it" and I would feel guilty like I was a pessimist. Finally, I realized, for my personality, I HAVE to think of it!!! How else can I make informed decisions if I don't know as many possible upsides and downsides as possible. What else would drive me to do the research to see what possibly might be in our power to avoid progression? How could I live with myself if we have a bad outcome because I followed people's advice to "not to think about it" so I don't "drive myself crazy" and therefore would never found out about spinecor or VBS or some of the other less mainstream options. So there is my little (big!) rant...I will no longer let any doctor, friend, relative, anyone make me feel defensive about the fact I am obsessed with learning as much as I can and projecting all possible outcomes. I know these people mean well and are trying to comfort so its not like I'm annoyed, but I did feel kind of let down at the time.

                  Did I tell anyone I really love my mom? She (and my dad) are the only people who seem to be feeling my pain and worrying as much as my husband and I are. When I called her to tell her the good results of katie's 1 month checkup, she cried in relief/happiness (which ofr course made me cry)...it showed me that she is holding her breath just as much as we are...But it also so nice to see all you here also understanding the feelings and sharing such useful information. You all really got me through the very long, very dark nights that followed those first weeks after katie was diagnosed. I'm really blabbering here, aren't I? Sorry!
                  daughter, 12, diagnosed 8/07 with 19T/13L
                  -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
                  -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
                  -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

                  Comment


                  • Jill,

                    I am happy your daughter is doing well. Nicole's passion is tap. She was not going to be a professional dancer. Just wants to dance and compete with her friends. I understand all of your thoughts and feelings. Let's just all accept the fact that aside from some of our family members and one or two amazingly understanding friends, nobody knows what we are going through. Let us be thankful for the internet and this site. What would we have done thirty years ago? In the book Deenie, she looks up scoliosis in her encyclopedia. As Nicole always says to me, "Mom, how did you ever live back then!!!!"

                    Anyway, I have to confess that looking back now that I am on the other side of it, I didn't always say the right thing to friends when they were going through something. I guess I really didn't understand until I was on this side.

                    Anyway, you are all so wonderful and it is enough for me that you all understand.
                    Melissa
                    From Bucks County, Pa., USA

                    Mom to Matthew,19, Jessica, 17, and Nicole, 14
                    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                    Comment


                    • Awwww Jill. You have every right to vent--we all do. I think forums DO become an anonymous outlet of sorts...because we DO bite our tongues to all the people in our everyday life, who just dont get it.
                      Yes, heard it all myself. I'll share the REST of the story on the "guy in the grocery store"...he worked at the deli, and I was just trying to order some lunchmeat! He asked about the brace ( there were other customers looking on)...I answered briefly. He continued to probe. He then asked if "this was a birth defect"....I answered quietly with "can I please have my turkey." Geez...it was two days after we got home with the brace.
                      I have had it happen since, and now I just answer any and all questions with "he's fine, thank you." Im almost glad its cold again, as less people start in with the bulky clothes on. Not that Im embarassed a bit...I just cant believe how rude and thoughtless people can be. I have never once thought about asking someone why they are in a wheelchair, or why they have an eye patch or so on...
                      Then, yes, you have the well meaning family members...which STILL can get dicey. Many people in my husbands fam want answers/ reasons/plans that we just cant give them. Our Grandmother cries at the sight of him in the brace ( a BIG no no with me. Cry...just do it in private...I did.) Friends have been the best so far...positive, upbeat, understanding. My sister is the best too. Be glad your Mom is involved and supportive, though. I would love that. My mom is somewhat of a recluse, has nothing to do with anyone in the family. We've made her aware of Miles' condition over a year and a half ago...she's yet to respond. Oh well, we have our own family, friends, and forum family. Hows that for a vent!!! Hang in there, and enjoy the good times, which are many-hence any circumstance!
                      Mom of Miles (2 1/2 )
                      Diagnosed at 14 mo.
                      start curve 30*/Prog. to 37*/26*CURRENT
                      TLSO braced. VBS tentative for 2008
                      Patient of Dr. Betz, PA.
                      mom to Allie (12) and Ben (10)

                      Comment


                      • Question about stapling

                        I know this is the Spinecor thread but that a lot of parents read it who know about stapling. My daughter is 17 1/2 and pretty much done growing - are they using it on kids this old or do they have to have a lot of growing left? She has a double curve, about 44, 44. thanks

                        Comment


                        • Dads

                          Originally posted by mariaf
                          Celia,

                          That's so funny - when I was posting about what kind of person it took to look outside the box for better alternatives I thought of my hubby as well. He's a great dad and all but he just accepted what he was told by our former ortho (to keep David in a hard brace until he was done growing and hope for the best) because he figured she was the doctor. Granted, she had a good reputation and maybe she was the doctor but we were the PARENTS!

                          When David was first diagnosed in 2000 my oldest was 12. I thought to myself "I've been a mom for 12 years - I thought everything could be cured with a weeks' worth of antibiotics"!

                          I think it was Melissa who very accurately said that nobody else understands. As you and I and a lot of others know, as a mom it's horrible to be told your child has a condition that you can't "fix" right away. But being moms, we suck up the pain of that and keep looking for better answers.

                          And you're correct - a lot of men, because they are focusing on their jobs or other things, or perhaps because they're just made differently, don't realize how awfully different things could have turned out.

                          But we know better.

                          Oh BOY. Same here. It a subject I dont ever touch on publicly ...but I am right there with you ladies on THAT. ( Celia, is there some odd happenstance that we are married to the same guy???? Stocks, the market, mortage rates, work, work,...sighhhhhhh) I (happily) sit up nights researching. Planning all the strategies, if you will. I cant see Ben ever getting on a forum, he's not an open guy. He is a good dad too, and I know that this affected him greatly...I almost think he submerges himself IN work and his business and his website etc, etc to ease the stress of it. He comments that "he knows that I know what Im doing...he trusts all my decisions"...and thats fine, he can.
                          When Miles progressed rapidly there for a bit, and they said he'd need VEPTr...it affected me so deeply that it took a serious toll on our marriage. I felt like a disaster, and took every bit of it out on Ben. We did some counciling, and got through it. But...I can relate to you ladies on the level of the hubs just sort of "going with the flow", and not going to that emotional place that we do.
                          Mom of Miles (2 1/2 )
                          Diagnosed at 14 mo.
                          start curve 30*/Prog. to 37*/26*CURRENT
                          TLSO braced. VBS tentative for 2008
                          Patient of Dr. Betz, PA.
                          mom to Allie (12) and Ben (10)

                          Comment


                          • UMMM... Gerbo

                            speech button on the right??? What?? All that happens is I highlight with the left button then hit the right button and it says" cut, delete. paste....." So now what do I do to highlight a quote??

                            Stephanie
                            Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
                            10/8/08 ~ curve is immeasurable!!
                            07/16/09 ~ a few degrees overcorrected... being monitored
                            12/28/09 ~ 14* overcorrected to the right
                            2/23/10 ~ 12* overcorrected
                            3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

                            Comment


                            • Originally posted by milesmom
                              I cant see Ben ever getting on a forum, he's not an open guy. He is a good dad too, and I know that this affected him greatly...I almost think he submerges himself IN work and his business and his website etc, etc to ease the stress of it. He comments that "he knows that I know what Im doing...he trusts all my decisions"...and thats fine, he can.
                              OK, Adele, you joked earlier that perhaps you and Celia were married to the same guy. Well, I have news for both of you - after reading this quote, WE are definitely married to the same guy. Gee, you are sharing Ben with lots of other women - LOL!!
                              Last edited by mariaf; 12-03-2007, 07:59 PM.
                              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/

                              Comment


                              • My husband has been really great about Esme's scoliosis - just like he was with her PANDAS. He was the one who actually found the PANDAS and figured out this is what she had then he convinced the doctors. On scoliosis he has read everything he can find on the internet and at the library. He has dug deep into the subject reading lots and lots of medical articles. He has called experts in Canada and the U.S.

                                When we first found out last August that the doctor wanted to do spinal fusion on Esme, my husband didn't actually work, but briefly each day, for about a month. He is self employed so has this choice. He has spent countless weekends with the laptop on his knee googling around looking for answers. He has spent a lot of time looking for a cause for the scoliosis - thinking if he can find a cause he can find a cure.

                                My husband attends all Esme's doctor's appointments.

                                My husband does deal with stress differently to the way I do - always has. He appears calm cool and collected about the children's illnesses - dealing with the facts and not showing emotion. I, on the other hand, am more likely to be high strung before appointments, quick to temper and emotional. When I explain that I am feeling stressed about this whole issue and nothing can ever make it right he tells me to accept it, to do what I can to make it better, but to accept it. My daughter tells me that if I feel stressed I shouldn't - she tells me she is the one with the scoliosis and if I think I am stressed what do I think she is feeling.

                                Overall though as a family I think we are coping fairly well, given the circumstances - we are all looking forward to a cozy Christmas by the fire and spending some time with Mike's brothers and sisters (my whole family lives in England). Mike's brother has early onset Alzheimer's which is progressing rapidly so this may be his last Christmas when he remembers any of us!

                                Ruth
                                Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

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