Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 30

Thread: Urgent Help needed for new 7 year old SCI

  1. #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.


    Quote 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 at 11:02 PM.

  2. #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)

  3. #13
    Senior Member
    Join Date
    Mar 2008
    Location
    Perth, Western Australia
    Posts
    638
    Quote 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 at 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.

  4. #14
    Senior Member elarson's Avatar
    Join Date
    Mar 2012
    Location
    The Netherlands
    Posts
    2,217
    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).

  5. #15
    Quote 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).

  6. #16
    For us, if you are on FFL your insurance continues. Worth looking into.

    The Christopher & Dana Reeve Paralysis Foundation have a nice book for young children about SCI. It is designed for a child with a parent with SCI, but I think it still might be helpful. It is free. You can request a copy here.

    While you are at it, also request this book, also free.

    It is critical that your son get to a specialty SCI acute inpatient rehabilitation program. Do not allow him to be sent to a general program, or one designed for only adults, nor to a "sub-acute" or nursing home level program. He should only need 6-8 weeks of inpatient rehab, and should not need to be home with supervision (vs. going to school) any more after rehab than he does now if he gets a good rehab program as a foundation for his life.

    Also, it is time now to start the process for getting his school IEP started. Your wife should know how to go about this.

    Also, I would strongly recommend that you remove your personal e-mail from the post above in this forum. It sets you up for spammers/scammers, or cyberstalkers. If you turn on "accept private e-mail" on your profile, others here can e-mail you without knowing what your address is, and you can also communicate with others through the PM (private messages) feature. A moderator can remove that for you if you are unable to edit. Thanks.

    (KLD)
    Last edited by SCI-Nurse; 01-09-2013 at 10:56 PM.

  7. #17
    Quote Originally Posted by SCI-Nurse View Post
    For us, if you are on FFL your insurance continues. Worth looking into.

    The Christopher & Dana Reeve Paralysis Foundation have a nice book for young children about SCI. It is designed for a child with a parent with SCI, but I think it still might be helpful. It is free. You can request a copy here.

    While you are at it, also request this book, also free.

    It is critical that your son get to a specialty SCI acute inpatient rehabilitation program. Do not allow him to be sent to a general program, or one designed for only adults, nor to a "sub-acute" or nursing home level program. He should only need 6-8 weeks of inpatient rehab, and should not need to be home with supervision (vs. going to school) any more after rehab than he does now if he gets a good rehab program as a foundation for his life.

    Also, it is time now to start the process for getting his school IEP started. Your wife should know how to go about this.

    Also, I would strongly recommend that you remove your personal e-mail from the post above in this forum. It sets you up for spammers/scammers, or cyberstalkers. If you turn on "accept private e-mail" on your profile, others here can e-mail you without knowing what your address is, and you can also communicate with others through the PM (private messages) feature. A moderator can remove that for you if you are unable to edit. Thanks.

    (KLD)
    I know, I'm on about abbreviations and buzz words again...but for those of us who don't know and for those who might read this thread after a search in the future, IEP stands for Individualized Education Plan. FFL stands for Family Friendly Leave. I am glad all of you know about these abbreviations, because as I come across them, I am at a complete loss.

    All the best,
    GJ
    Last edited by gjnl; 01-10-2013 at 11:05 PM.

  8. #18
    Quote Originally Posted by SCI-Nurse View Post
    For us, if you are on FFL your insurance continues. Worth looking into.

    The Christopher & Dana Reeve Paralysis Foundation have a nice book for young children about SCI. It is designed for a child with a parent with SCI, but I think it still might be helpful. It is free. You can request a copy here.

    While you are at it, also request this book, also free.

    It is critical that your son get to a specialty SCI acute inpatient rehabilitation program. Do not allow him to be sent to a general program, or one designed for only adults, nor to a "sub-acute" or nursing home level program. He should only need 6-8 weeks of inpatient rehab, and should not need to be home with supervision (vs. going to school) any more after rehab than he does now if he gets a good rehab program as a foundation for his life.

    Also, it is time now to start the process for getting his school IEP started. Your wife should know how to go about this.

    Also, I would strongly recommend that you remove your personal e-mail from the post above in this forum. It sets you up for spammers/scammers, or cyberstalkers. If you turn on "accept private e-mail" on your profile, others here can e-mail you without knowing what your address is, and you can also communicate with others through the PM (private messages) feature. A moderator can remove that for you if you are unable to edit. Thanks.

    (KLD)
    Email, gone. Thank you for those resources. I will look into the FFL more in depth. We've been told that the closest in-patient SCI speciality rehab center is Shriners in Sacramento... an 11+ hour commute from our home. While we're considering the option, we also have two other children we have to take into consideration/find places for. Thank you for the IEP reminder, my wife has said that you are a life-saver on that since it's something neither of us have thought about. Thank you so much for this advice and input.

  9. #19
    Even though it seems impossible to go so far from home-do it.
    Get the very best now and you won't regret it.
    When my husband had his accident 4 years ago it was shocking to find out we would need to go to Craig Hospital in CO, but it was the best thing that happened. He would be in a nursing home if he (we) had not gone there and learned everything about a spinal cord injury.
    My heart goes out to you and your family.

  10. #20
    David, my heart goes out to you and your family. Many of us on this site were injured in sudden and unexpected ways, throwing our families into tailspins. The early days are the hardest with so many decisions to be made. If you have not done so already, consider starting a caringbridge.org site to keep loved ones updated on your situation. It can be an emotional life-saver and is completely free. We will help you with our experience in whatever way we can.

Similar Threads

  1. Urgent Info Needed!
    By skippy13 in forum Equipment
    Replies: 2
    Last Post: 10-25-2010, 08:11 PM
  2. Urgent wheelchair wheel sizing help needed
    By keps in forum Equipment
    Replies: 9
    Last Post: 02-12-2010, 06:42 PM
  3. Urgent action needed
    By Random in forum Life
    Replies: 1
    Last Post: 05-13-2009, 10:59 PM
  4. Replies: 7
    Last Post: 08-06-2006, 10:54 AM
  5. Urgent help needed
    By tigergirl in forum Care
    Replies: 6
    Last Post: 08-30-2005, 02:05 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •