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  • back to school for daughter

    Hello! I just found and registered on this site! I recognize some of you from Spine Kids. Could someone please tell me about their child's return to school after spinal fusion? What things did you find were really helpful for your child or for the school to know? Mine's due to go back in about a month, and I have a PPT meeting next week. A little apprehensive about it all. Thank you all!

  • #2
    back to school for daughter

    hi pat,
    Glad you found this site. You will find that everyone here is great and so helpful.
    my daughter as well will hopefully be going back to school next month so i will read what people write to you. What is ppd?
    jennifer

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    • #3
      Hi Pat,

      The timing of kids going back to school is very individual. The average time out of school is approx. 6 weeks, but there are many variables to this. The surgeon and others will be able to help her know when the right time to return will be.

      A few things I would have lined up for her when she returns include having a set of books at home as well as in each classroom. She won't be able to carry more than about 5-10 pounds for a while. And twisting to get a backpack/bag on and off her shoulders will be a no-no for a while.

      See if the school will allow her to leave each class 5 minutes early to avoid rushing and pushing in the halls. She'll be cautious, especially at first, and unable to walk as fast as everyone else.

      Does she have a good friend who can help her carry a pillow to each class? Maybe a travel-size (small) pillow? She'll want to lean against something soft. Braydon changes class three times in the day (4th grade). He has a pillow attached to the back of the chair in each room. It's a permanent way to keep him leaning against something soft. This is written in his 504 plan.

      Would they consider allowing her to go back for half days the first week or so? Her energy level will be dramatically less than before surgery. Braydon goes to school half-day for about a week before going full time.

      Have a written plan from the doc for any meds she may need. This includes Tylenol (OTC). Even if she never needs it, you'll want her to be able to get it if she needs it.

      Friends - does she have a few friends who will run block for her? Maybe invite them over for a treat and enlist their help in easing her back to school. If they know WHY you are asking them to help, they will be more willing to help. There are lots of ideas teens come up with to help their friends. Ask them - you may be pleasantly surprised with the support you get.

      If I think of anything else, I'll write again. Good luck and let us know how things are going.
      Carmell
      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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      • #4
        Thanks!

        Hi Jenn! We've "talked" before on spinekids! About the bumpy school roads, I got a note from her doctor saying she needed to be transported on a "special" mini school VAN vs. the regular school bus; too crowded and it's on the road too long, picking up kids. That's in place till the end of the school year (June 05). Jenn, a ppt is a school meeting where you implement a 504 plan, which allows for modifications the school must make to accomodate your child's new medical condition. Very important to have in place; it's absolutely a necessity.

        Carmell; Thank you for the info! I like the idea of having her friends come over and enlisting their help; sorta of a pre-school meeting. Great idea! And the Doctor's note to dispense meds, I didn't even think of that!


        Thanks!

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        • #5
          back to school for daughter

          hi pat,
          sorry i didn't realize i've spoken to you on spine kids. Now i remember. Sorry to sound so dumb, but now what is a 504 plan? I am really not up on all this. Also who in the school do i need to speak to about all this?? My nicole says she refuses to go on a mini bus so i guess i'll be driving her for a while. So are there any other modifications the school should be making other than books for home, a helper in the halls from each class and that she can be dismissed early from each class to have more time getting to the next? Those are the things that i have already spoken to the school about. Am i leaving anything out??

          thanks
          jennifer

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          • #6
            Hi Jennifer,

            A 504 plan is a federal law that requires all public schools to make the necessary accommodations for children with physical needs/disabilities to have an equal education. You set up a 504 plan with the principal and any teacher/nurse/aid who will be working with the child. Braydon has a 504 review every year to make sure the school and I are on the same page with his care. His issues are minor, but when they are written down, then there is no confusion. For example, it is written in his 504 plan to allow him to be the last one in from recess, to allow him to go to the bathroom when needed (renal and bowel issues), and to provide a pillow on the back of each chair. He also has specific PE limits written. Like I said, minor stuff, but important to have written down.

            I would talk with the principal. Some would probably not recommend a 504 plan just for a surgical recovery. But others may see this as a life-altering event (i.e., now she has metal rods in her back that will never go away). Its up to you to decide what is best based on your comfort with the teachers and principal. Good luck!

            (I don't think I answered your question very well, let me know if I should try again.)
            Carmell
            mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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            • #7
              back to school for daughter

              hi carmel
              yes, you definitely answered my question and you did it very well! thanks

              jennifer

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              • #8
                Hi Jennifer....

                I contacted the guidance counselor at my daughter's school as soon as we knew a surgery date (surgery is Tuesday) just to start the ball rolling. She has been very helpful. I turned in a note stating the need for homebounding tutoring, no gym, extra set of books in the classroom, the need to leave class a few minutes early, etc. We haven't discussed to much about her return to school as that will be weeks away at this point. She said to contact her a few days in advance of Jamie's return and she will have everything set up for her.

                Jamie's school has been very good to us. They provided an extra set of books last year when she was wearing a Milwaukee brace and couldn't carry a heavy bookbag. We are also lucky, because the school just went through the same experience with a young man in Jamie's grade, so they are very familiar with her needs.


                Mary Lou

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                • #9
                  back to school for daughter

                  hi marylou,
                  that is good to get the ball rolling for tutors, etc. to be set up while she is out. I did that also beforehand and the school has been very accomodating with everything we have needed. Nicole had a brace before her surgery (didn't wear it though) but we always had an extra set of books for at home even though she wasn't wearing the brace i thought it couldn't hurt her not carrying the heavy load. For going back to school the guidance counselor told us that she can go back at the beginning for as many classes as she could until she is ready to go full days.
                  Did i read correct Jamies surgery is tuesday?? How are you guys holding up?
                  jennifer

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                  • #10
                    Hi Jennifer...

                    Yes, Jamie's surgery is Tuesday. Yikes! Actually we are doing pretty good. Thanks for asking. We've been keeping busy with making arrangements with the school, doing our Christmas shopping, etc. Jamie is so calm right now, in fact, she just left to go deer hunting with her Dad! I'm sure things will be different on Monday and Tuesday.

                    Thanks for sharing your experience with Nicole. As you know, it is reassuring to see great outcomes with other children before your child faces surgery. Wish Nicole the best for me.

                    Mary Lou
                    Last edited by ; 12-05-2004, 09:01 AM.

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                    • #11
                      thanks . . again!

                      Wow, what a great amount of information! What a great board this is! I think we're ready for our school meeting.

                      Marylou, I have a Jamie also, spelled the same way. Jamie had her surgery about five weeks ago. And Jenn is right, the progress these kids make week to week is amazing!

                      I talked with my daughter's teachers last week and one of them even suggested that they pull some kids out of her classes, some "real lively/physical/suspended a few times" kinda kids. I don't think most people (the kids in particular) realize how sensitive their backs are, and rightly so!

                      Marylou, what are your plans for while the surgery's going on?! Jenn what did you do? I knitted like three scarves, and probably walked/paced a couple miles!!

                      Thanks! Pat

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                      • #12
                        back to school for daughter

                        marylou
                        good luck for tuesday. You guys will do fine. When you get home from the hospital post and let us know how it went. We'll be thinking about you.

                        pat,
                        to be honest after nicole went in i cried alot and for quite a while. The hospital we were in had a big room to wait in with a beautiful view of the east river basically we just sat around drank lots of coffee and waited until the dr came out. There was a computer in the waiting room so i went on that. All i wanted to hear from the dr was that she wiggled her toes then i cried again.

                        jennifer

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                        • #13
                          Jennifer and Pat...

                          Thank you for your good wishes. I'll try my best sometime next week to atleast post a quick message. If not, don't worry, I'm sure I'll have a lot to post once Jamie is home!

                          What am I planning to do while Jamie is in surgery? That's a good question. My Mom will be there with me so I'm sure we will talk a lot. I'm taking a good book, but don't think I will be able to concentrate on that. I started a journal when Jamie was diagnosed, so I know I will be doing a lot of journaling while we wait. I honestly think that will be the only thing I can concentrate on. My journal has been a lifesaver at times! Jennifer, I'm sure I will also shed some tears. As Moms, how can we not shed some tears? Tears of worry until you hear from the doctor that they've wiggled their toes; tears of joy when they do wiggle their toes; tears of relief when it is all over; and of course, tears of joy when you see them well on their way to recovery.

                          Thanks again, Pat and Jennifer for all your help.

                          Mary Lou

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                          • #14
                            Mary Lou,
                            My daughter just had surgery 19 days ago. I felt just like you did beforehand. I can really feel your anxiety. I think the anticipation was the worst part of this whole thing. And then later seeing your child in pain. But children are so resilient and strong. My daughter was also "laid back" about her operation. I don't think she could have imagined what things would be like. She just trusted the professionals. She even thinks she wants to become a nurse now.
                            The one thing you should be prepared for is that when she comes out of surgery, she will probably be very swollen in her face. This is normal. Hang in there and let us know how things are. Sending positive thoughts and prayers your way. Maureen
                            16 year old Daughter Laura; surgery done Nov 18,2004 for congenital kyphosis and scoliosis.

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                            • #15
                              back to school for daughter

                              hi maureen
                              just wanted to know how your daughter is doing. Hope her recovery is going well. It's funny most people say their childrens faces were swollen and to be prepared for that my daughters wasn't at all. I was very surprised.
                              jennifer

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