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Urgent Help needed for new 7 year old SCI

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  • Urgent Help needed for new 7 year old SCI

    Hi Folks

    My heart is broken for this family in Utah whose 7 year old was injured on Sunday 1/6/2013. They are distraught and asking for advice I am sending them here for some more advice but in case he does not does anyone know of resources for kids with SCI. I have sent them to the Reeve Foundation and The Miami Project.
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  • #2
    Please also give them the Shriner's SCI Centers as an invaluable resource for people with SCI. The closest to them would be the one in Sacramento, CA.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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    • #3
      thanks
      Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

      Comment


      • #4
        This is the dad's email if anyone else has information for him, he asked me to post it here
        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

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        • #5
          As KLD said: The Shriners is invaluable. They will provide care, rehab and equipment til he is 21 and possibly beyond if he is still in school then.

          I've had two youngsters I mentored in their early years post SCI. We met with the Shriners locally and set up everything here. They both went to Sacramento.

          Years later, mostly due to the Shriners help, they are both well, active and productive young adults. I am so proud of the two of them and am eternally grateful for what the Shriners did and continue to do for our young.

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          • #6
            Originally posted by muskie View Post
            This is the dad's email if anyone else has information for him, he asked me to post it here
            The email address hasn't come out on your post...

            I'm happy for him to PM me if he wants some general info/advice/help, but unfortunately can't assist in USA information, not being based anywhere near there...

            You can also let him know that there are 4 or 5 parents of kids his age with mid-thoracic injuries who contribute here...we've probably all been through what he's going through now. Not good, but things will improve, particularly with the right attitude.
            Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

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            • #7
              7 year old son-- New injury

              Recently (12-30-12) my 7 year old son was in a snowboarding accident near our home in Utah. He has been declared a T1 complete paraplegic. Another member here (Muskie) posted a few days ago on mine and my wife's behalf looking for any advice and information. I am now here making the same plea yet again. We are desperate for any tips or information that any of you have to offer. We have two other children as well and are at a loss as how to explain all of this to them. Our children are our lives and we want to make sure we are doing everything for all of them during this time. Thank you all in advance.

              -David Hillis

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              • #8
                David, I sent you a private message.

                Jim

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                • #9
                  There is no way to sugar coat this: you and your family are in for a roller coaster ride. Emotions will run high, stress will be unbearable at times. Your focus will be on your injured son. I can't stress this enough: you need to pay close attention to your other 2 children. When my son was injured, my daughter was just about to graduate jr. High. She was totally shoved aside. We didn't mean to do that, it just happened. The whole sci thing is overwhelming. Our daughter survived. Did well in high school and graduated college last June. It's a tough road. Hopefully you have a good support network of family and friends. I wish you all the very best and Care Cure is a very good place for you to visit. There is a wealth of information here and it will become your "go to" place to vent and ask questions and get advice.

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                  • #10
                    Originally posted by DavidHillis View Post
                    Recently (12-30-12) my 7 year old son was in a snowboarding accident near our home in Utah. He has been declared a T1 complete paraplegic. Another member here (Muskie) posted a few days ago on mine and my wife's behalf looking for any advice and information. I am now here making the same plea yet again. We are desperate for any tips or information that any of you have to offer. We have two other children as well and are at a loss as how to explain all of this to them. Our children are our lives and we want to make sure we are doing everything for all of them during this time. Thank you all in advance.

                    -David Hillis
                    Shriners is a very good choice, Frazier in StLouis is among the best pediatric rehab centers, Kennedy Krieger in Baltimore is excellent. The Craig Center in Colorado is close to home but I don't believe they accept anyone under 17. Life goes on and regardless of return your son can live a full and exciting life. My son was injured 8/7/08 (C5/6 Asia a complete) at 14 years old. He graduated from High School with honors and is thriving in an Engineering program at college. He drives an adapted van and lives an active social life. He is one of the few who has not received any return of function. You can hope/expect return up to 2 years after injury.

                    Life does return to some sense of normalcy and with just a little luck your son can get return. Keep him active and take care of yourselves too.

                    If you send me a private message I'll be happy to give you my cell #.

                    Jim

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                    • #11
                      Muskie thank you for posting this on here.

                      I am the father of the 7 year old. My wife and I are grateful for the information that has been shared with us this far. We are currently in contact with Shriners as well as exploring a few other options that may be more sensible in distance for our family. My wife and I are both unable to take long absence from work (though we've explored the option of my wife resigning we are unsure if we will able to do that financially) we also have two other children that we would like to keep engaged in their normal day to day lives. Right now we're considering everything with caution and exploring the best options for both our son as well as our family. We cannot thank you all enough for your input, support, and encouragement.


                      Originally posted by Gordy1 View Post
                      The email address hasn't come out on your post...

                      I'm happy for him to PM me if he wants some general info/advice/help
                      Gordy, I tried to private message you, but I am unsure if it went through. I am relived to find another parent with a young child in a similar situation.

                      -David
                      Last edited by DavidHillis; 01-09-2013, 11:02 PM.

                      Comment


                      • #12
                        Combined the two threads into one.

                        Please ask questions. We can help.

                        How old are the siblings??

                        Are you not eligible for Family Friendly Leave (FFL) for your jobs?

                        (KLD)
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment


                        • #13
                          Originally posted by DavidHillis View Post
                          Gordy, I tried to private message you, but I am unsure if it went through. My email is XXXX, please feel free to contact me through there or here. I am relived to find another parent with a young child in a similar situation.
                          PM worked...I've just emailed you.
                          Last edited by SCI-Nurse; 01-10-2013, 02:18 AM.
                          Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

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                          • #14
                            Hello David, I am hoping for all the best for your son and your family. I can not imagine what you must be going through, but you have come to a good place for information and support.
                            Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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                            • #15
                              Originally posted by SCI-Nurse View Post
                              Combined the two threads into one.

                              Please ask questions. We can help.

                              How old are the siblings??

                              Are you not eligible for Family Friendly Leave (FFL) for your jobs?

                              (KLD)
                              We have twin boys (Braedan and Braxton) who just turned 7 on Christmas Eve and our daughter Gracie will be 5 in mid Feb.

                              With me being military, leave time is a little different, however I am blessed with flexibility. My wife, as a school teacher is eligible. The problem with FFL though is only a few days are paid leave, the rest is unpaid and it is built for short-term. We're currently exploring the option of her quitting for the remainder of the school year, however, she is the primary insurance provider for the children (state insurance is better coverage than what the government offers).

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