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  • #16
    Hi Melissa

    Did Nicole start back to school yet? It sounds like she's doing so well, that's great. I would be thrilled if Sheena actually wanted to return to school. She's a good student but her preference is to be at home working on her art or other projects she has going on.

    What is the 504 plan for?

    I just submitted all the paperwork for homebound yesterday which is just for tutoring. All the other privileges (elevator, early dismissal, etc) will be handled through the nurse or her counselor.

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    • #17
      Nicole is starting back tomorrow on her one month anniversary of the surgery. She will do part-time all next week. If all goes well, she will be full-time the week after that. Some days will be in the morning and some in the afternoon. Her schedule changes constantly. It is very confusing.

      Basically the 504 plan includes the accomodations we have been talking about in this thread. Hopefully most of them will be temporary so Nicole can just feel like a regular kid.
      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

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      • #18
        Great Advice all around

        This is my first post in several years, since we jumped from the 'waiting/bracing' to the 'surgery' forum.
        I have benefitted greatly reading all the information derived from this forum. My daughter Amanda, age 15 1/2 will have her surgery Nov 15. She wore a Milwaukee Brace from age 10-12, then we switched doctor's and she went to a Boston for all of 7th and 8th grade. She was released from the brace to start her freshman year in HS , risser 5 , curves T45 L32. First diagnosed at age 10 with T35, she wore her brace extremely compliantly, and basically took it off for ballet 6 hours a week and showering. When we went to her follow up in July the curves had progress to T51 L38 and her doctor said surgery should now be scheduled within the next few months.

        RE the 504 plan, Her HS counselor hasn't suggested that for Amanda, but has arranged in advance for a homebound 6 wk teacher for her classes.
        Because her surgery will be the week before Thanksgiving, then Christmas break only a month away, I think she'll only be out of school for 3 weeks, and may be fine with keeping up with the work. Cutting out the extra curricular activities alone will increase her time for schoolwork when she feels up to it. She's very active in theatre, dance, and choir -
        Emma12 am happy to hear the return to school is going well for your daughter, especially how she's getting back into the swing of things.

        Mary -
        TX

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        • #19
          Hi Mary

          I see your daughter and mine will be having surgery on the same day. My daughter is also 15 (just changed my sig), 10th grade. Good luck, I know we won't be alone that day.

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          • #20
            Mary,

            Welcome!!! I wish your daughter all of the best.
            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

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            • #21
              Thank you Melissa and Sherie...
              Wow Sherie, what a coincidence, same day surgery and same age girls. You're right we will not be alone! I'm building prayer warrior list with everyone I tell about the surgery. Let me ask everyone another question:
              As far as the medical part of the surgery goes, we are feeling pretty comfortable, and love our hospital/surgeon, but what I also wonder about in the pre-surgery and recovery part is the mental health stability of the whole thing for these young adolescents.
              I know for one, my daughter -15- (soph HS) has been very distant and not wanting to talk about any of it past the very basics. She has exhibited behavior very unfamiliar to me as we have always had such an extraordinary relationship... now we have closed mouth distance and irratabililty.
              Is it the upcoming surgery, or just as likely - that adolescent switch you hear about around the age of 14/15 where you ask your youngster :" Who are you and what have you done with my daughter?:
              Any thoughts? Amanda is normally a very strong confident girl.

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              • #22
                Mary

                My daughter does not care to discuss the surgery either. I'll talk about things to her, especially what's necessary, but she's not going to initiate any conversation at all about it. She also doesn't seem interested in Spinekids or any other type of support group. She's not keeping it a secret at school, she's told all of her friends about it and isn't embarrassed or anything. It's a little frustrating, but I think this is just their way of coping with it. As far as our relationship, we're much closer now than we were several years ago.

                How many levels is your daughter getting fused? Has she given any blood? I'm taking Sheena tomorrow to donate one unit.

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                • #23
                  Welcome, and thanks. My daughter had her first week of full time at school, and although she was tired, she did very well.

                  She didn't really want to talk about any of the details of surgery before. When we went on the pre-op tour of the OR and floor, we had a great child advocate who very clearly explained the need to go over some of the details (like all of the tubes she would be attached to after surgery). She got my daughter to open up and discuss her fears like I had not been able to. Afterwards, she still wouldn't discuss much with me, but, at least I knew that she knew what she had to know. I think hearing about it from a third party was very beneficial, and she was trained in how to deal with kids and their fears about surgeries and hospitals in general. She knew exactly what to say to my daughter's questions. Hopefully, your hospitals provide some type of service like this.

                  We've always had a very open relationship, too, but, I couldn't get her to discuss much about the surgery. She also had openly told all of her friends, but just didn't want to discuss surgery in detail, and wants nothing to do with Spinekids, I've tried to get her on to read about other kids going through what she did, to no avail. I think that she just wanted to get it done and over with, and move on with her life. She seems to be happier than ever, I feel the same relief, and we are closer than ever now. As she is only 12, I can't speak for the change of the 14/15 yr olds, however, before surgery, we were having "our moments" -- I think it was fear of the unknown, on both of our sides. I know that I had to keep telling myself to relax and not get worked up about the "stupid" things in life, it's reasonable to assume that your daughter is just feeling the stress of the upcoming surgery.

                  Good luck, there is lots of helpful information here, and I hope things go well for you both.

                  Comment


                  • #24
                    Surgery

                    Originally posted by MimiT
                    This is my first post in several years, since we jumped from the 'waiting/bracing' to the 'surgery' forum.
                    I have benefitted greatly reading all the information derived from this forum. My daughter Amanda, age 15 1/2 will have her surgery Nov 15. She wore a Milwaukee Brace from age 10-12, then we switched doctor's and she went to a Boston for all of 7th and 8th grade. She was released from the brace to start her freshman year in HS , risser 5 , curves T45 L32. First diagnosed at age 10 with T35, she wore her brace extremely compliantly, and basically took it off for ballet 6 hours a week and showering. When we went to her follow up in July the curves had progress to T51 L38 and her doctor said surgery should now be scheduled within the next few months.

                    RE the 504 plan, Her HS counselor hasn't suggested that for Amanda, but has arranged in advance for a homebound 6 wk teacher for her classes.
                    Because her surgery will be the week before Thanksgiving, then Christmas break only a month away, I think she'll only be out of school for 3 weeks, and may be fine with keeping up with the work. Cutting out the extra curricular activities alone will increase her time for schoolwork when she feels up to it. She's very active in theatre, dance, and choir -
                    Emma12 am happy to hear the return to school is going well for your daughter, especially how she's getting back into the swing of things.

                    Mary -
                    TX
                    I have sent you an email. See you live in TX. Please let me know how it goes. What fate you are both having your daughters surgeries on the same day and they are the same age! MY daughter shares the same name as yours. All the attitudes you mentioned I can relate too. My daughter did not want to talk about it too much, and she did not care to go to the spinekids forum. I did get her to read a few posts I thought she might benefit from. She did hear from Sherie's daughter which was thoughtful and helpful.
                    Shirley
                    Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

                    Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

                    Comment


                    • #25
                      Nicole

                      Originally posted by MATJESNIC
                      Nicole is starting back tomorrow on her one month anniversary of the surgery. She will do part-time all next week. If all goes well, she will be full-time the week after that. Some days will be in the morning and some in the afternoon. Her schedule changes constantly. It is very confusing.

                      Basically the 504 plan includes the accomodations we have been talking about in this thread. Hopefully most of them will be temporary so Nicole can just feel like a regular kid.
                      Glad to hear Nicole is doing well. Sounds like 504 is a great plan. All our accomodations were handeled by the school nurse and the teachers.
                      Shirley
                      Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

                      Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

                      Comment

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