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  • #16
    Hey Lura
    So Glad Every Thing Went Well With Alex.
    Nicole Is Doing Well Too.
    I'm Still Wiped Out I Think If I Could Get About 8 Hrs Of Sleep I Will Be Fine. So I Just Wanted To Say Hi Glad All Is Well And Go Get So Sleep Talk To You Soon.
    Theresa
    THERESA

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    • #17
      Lura,
      How is Alex, your superman, doing? I read that he were concerned that he was listing to one side when he walked. Crystal was doing the same thing after surgery. While in the hospital, I was walking behind her with a wheel chair in case she couldn't get back to her room. The PT was walking along beside me. I asked him about her list. He told me that was normal with spine patients. He said they find a comfortable spot to be upright to walk and it would go away after a short time. He was right. Crystal now walks upright, with not list. My worries are over on that one. I was afraid we had traded one problem for another problem.

      Let us know how Alex is. We are praying for you guys.

      'til later,
      Nikki

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      • #18
        Hi Nikki!

        We are on at the same time tonight! Thanks for the information on the listing, I called Shriner's yesterday just to ask, and our care coordinator told me basically the same thing you said but because she dropped the ball during our Shriners surgery experience, I was questioning her reply! Alex actually seems to be less crooked today, and his personality is pretty close to normal as well. What a wild ride!! I am amazed by the way Alex has adjusted to his limited flexibility, he just seems to take it in stride! AMAZING!! I truly believe in the power of prayer, and there were many people praying for him.

        I keep reading the threads daily, alot I cannot identify with, so I just read and don't post. It's somewhat odd, but if I don't have anything to offer, it's just as well I don't add my two cents!! You are a wealth of information, and this site is blessed to have you!

        Great hearing from you!

        Lura

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        • #19
          Lura,
          I just know how worried I was about Crystal's list. When I saw your question about Alex's list, I wanted you to know my experience with it. I was so thankful for Carolyn when I came on this board, it was a big relief for me to have her to lean on. I feel it is just something I need to do for others too.

          Crystal is still in her brace and will be for about another 4-8 weeks. She is really hoping the doctor will let her take the brace off next week. I, on the other hand, want her kept slowed down for a while longer. She goes in to see her surgeon on the 20th. We will leave the night of the 19th and come right after appointments on the 20th. All three of my girls have appointments with their doctor on the 20th. What a day. But, I'd rather have it all at once than one each week.

          I can understand your not being able to identify with a lot of the threads. You had a lot more going on with Alex's health. I get really frustrated with a mom on another forum I am part of. Her son has lots of health problems, had his first spine fusion before his first birthday, and has numerous surgeries since, and she always gives new mom's the doom and gloom. I just try to reassure them that each child is different, some have other health issues, some don't. Each surgery is different and how each child recovers is different.

          I am so glad that I got to meet you over this forum. It is hard to believe we live so close, but yet so far.

          Well, I need to get. My kids are getting on my nerves and they need to go to bed.

          'til later,
          Nikki

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          • #20
            Nikki,
            I was very dissapointed when I read your post, as I was under the impression that we are all on these forums to help each other! The "doom and gloom" person that you were referring to, has helped me immensely, in finding the right treatment for my son. She has a vast knowledge of scoliosis, and it's treatment, and has helped alot of others who are dealing with this issue. I have been reading her posts(on this, and at least 3 other forums) for quite some time, and have never found her posts to be negative, or doom and gloom. Instead, they have always made me want to learn more! I believe that knowledge is the key, to finding the right treatment for our kids. Having a positive attitude about things is so important, but we also have to keep in mind, that there are a great many difficulties to overcome, as well. It is very true that each child is different, and has different issues to deal with, and "she" mentions this all the time. I find it very unfortunate that you would "publicly" point a finger, at someone who has helped so many others. Perhaps, in the future, you could use a private message, if you wish to make negative comments about someone who is(like most of us), only trying to help!
            Cathy
            Mom to Nicky, a happy, healthy 3 year old, who was diagnosed with a 48* curve, at 8 months of age.

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            • #21
              Cathy,
              I guess that makes me highly disappointed in you for your assumption and your implications that you made to me. I think you jumped to conclusions when that was wrong on your part. You don't have your facts, do you. This was on a completely different forum. Not this one. So, I am not sure what you are talking about. I was very clear to state that it was on a completely different forum. So, before you try to shame me, maybe you need to reread my post. I stated in it it was on another forum. Do you know all the forums I belong to. No you don't. So, please don't accuse me of saying something about someone on this forum. So, maybe next time you shouldn't point the PUBLIC FINGER until you get your facts straight. It was not from this forum I was talking about. There is more than this forum out there. And, there is more than scoliosis.org and spinekids.com out there too.

              I won't apologize to you for my comments, because I was not referring to anyone on these forums. I do apologize for you misreading my post. Maybe try reading it again. The forum I was referring to I don't even visit often because of the doom and gloom person, and there is not enough information that comes off of that forum.
              Nikki
              Last edited by nikyergen; 04-13-2005, 03:01 PM.

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              • #22
                Hi Lura
                Delighted to hear that Alex is still making such progress and walking straighter and, Nikki, it's so good to hear that Crystal is doing so well. I think this forum is about the only thing keeping me sane at the moment while we wait for a date.
                I phoned the hospital last week and Genevieve is now top of the list and they're just waiting for the consultant to give them a date. Meantime, every time the post arrives my stomach turns over, I can't concentrate and my colleagues at work must think I've left my brain on the breakfast table. Actually it's just ceased to function - I feel like I'm thinking through cotton wool.
                I actually ran away for a night on Monday and went with a friend to stay with my brother. I didn't want to go but my very good friend got very bossy and said it would be good for me as i needed a break before G goes into hospital. She was right but now that I'm back it's hard to remember I was away.
                OK. Deep breath and end of moan. It's time to put Genevieve to bed (she does not agree) so I better go and do my supermom impression.
                Thanks for listening, you two. Sorry to beso down.

                Lorrie

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                • #23
                  Nikki,
                  I was not looking for, or expecting an apology from you. I did read your post thoroughly, and knew that you were not necessarily talking about this forum. If you read my post, you would know that I am on quite a few other forums, as well. Many of us are. Anyone who is on any of these forums regularly, would know from your description, who you were talking about. I just don't think that it is in very good taste, to be making negative comments about anyone, on any of the forums. We are supposed to be on here to support, help, and encourage each other!

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                  • #24
                    Cathy,
                    Please read your private messages. I have sent on to you.
                    Nikki

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                    • #25
                      Lorrie,
                      So glad to hear Genevieve is at the top of the list. It was good for you to get away from the stress for a little while. It won't be long and you will be on the other side of surgery. Isn't it great Alex is doing so well. You ladies are wonderful moms. I know you have way more going on with you kids than I do, and you handle these things all so well. Keep up the great work. Keep us posted on Genevieve's Surgery.

                      'til later,
                      Nikki

                      PS-You weren't being down, you were being normal. Have a great day.

                      Comment


                      • #26
                        Oh my God, Nikki!!!

                        Do you feel like you've been thoroghly scolded?? Unjustly so in my opinion!!

                        Cathy,

                        You really need to chill out!! I have a Down syndrome son who just underwent scoliosis surgery, and Nikki has been my ROCK! She is inspirational, informative, and very caring. What she was doing in the "heinous" thread, was complimenting me as a parent, she wasn't being cruel to whoever the other woman was, she was simply stating that my attitude was "up" when it could have been "doom and gloom". Thank you so much for taking that pat on the back away from me. Perhaps it's you who needs to private message your personal attacks!

                        Lura

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                        • #27
                          Lorrie,

                          Mine turn to send you a virtual hug.......did ya get it? Please feel free to have as many pity parties as you wish, we will listen and give you the pat on the back you need!!! At least we can identify, as we have been in exactly the same place. Genevieve is a lucky girl and you are an awesome mom, with that team, how can anything go wrong? You are in my thoughts and prayers, and Alex, Crystal, Nikki, and Trenton and all the rest are proof that prayer works!
                          Whatever you do, try to keep rested, this side is equally if not more exhausting!
                          We are here for you!!!!

                          Lura

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                          • #28
                            Lura,
                            I give Nikki all the credit in the world, for being your rock when you were going through a difficult time. That is what we are all here for. The point I am trying to make, is that the person that Nikki was putting down, is my rock, and an inspiration to many. Just because that persons advice doesn't help everyone, that is no reason to put her down in such a public way. Heinous is your word, not mine. I'm glad that Nikki was there for you, and you deserve to be complimented on being such a wonderful parent, just not at someone else's expense.
                            Cathy

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                            • #29
                              Cathy,
                              Back off. You aren't reading your facts. I have had enough of your garbage. Go air your dirty laundry somewhere else. You are wasting time trying to defend something and I don't know what. You have a lot of issues with your son that you need to concentrate on. And, I suggest you do that. I am sure you are a wonderful mom. But don't get so hung up on something you are wrong on. The person you think I have referred to is someone I have talked to so now what. You need to end this now. We have other things to do here than this kind of garbage.

                              Comment


                              • #30
                                How about you use the "private messages" to settle your differences. People come to this site for help, and to see this type of back and forth arguing is quite disturbing.
                                1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
                                2000 Partial Rod Removal
                                2001 Right Scapular Resection
                                12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
                                06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

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