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Thread: 15 month old needs surgery- we need information

  1. #16
    Join Date
    Mar 2004
    Posts
    1,140
    Twinsmom,

    GREAT NEWS !!!! I was doing a search on google and I came up with this article, I'm not sure if it's the same one I read about on another group. I'll try to find the full article at the library next time I'm there. You could research it yourself if time is critical.


    Jack E. Zigler, Paul A. Anderson, Scott D. Boden, Keith H Bridwell, and Alexander R. Vaccaro
    What's New in Spine Surgery

    J. Bone Joint Surg. Am., Aug 2003; 85: 1626 - 1636.
    ...New Technology Investigators at several centers are currently exploring "fusionless" surgery in young patients with idiopathic scoliosis 50 , 51 ....


    Edit:

    Sorry... I forgot your son has congenital scoliosis.



    Celia
    Last edited by Celia; 05-15-2005 at 07:17 PM.

  2. #17
    Join Date
    May 2004
    Location
    Calgary, Alberta, Canada
    Posts
    29
    Sorry, didn't mean to make you panic. You guys sure do have a lot of stuff going on right now, but I'm sure that you will feel better, in the long run, if you have more than one opinion. I wish you all the best, and hope that you don't get overwhelmed by everything. You, and your family, will be in our prayers. Please keep us updated, when you can.
    Cathy

  3. #18
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Twinsmom,
    Don't panic. Everything will be just fine. I got moved into our new house four days before we left for Crystal's surgery. I unpacked a few dishes for my husband and middle daughter to get by on until we got home from the hospital. Thank goodness for my mother in law and sister in law. They fed them for a few days while we were gone. And, our best friends kept our middle daughter because they lived the closest to the school she goes to. Then add cattle, sheep and horses to the pile. We were still feeding for the winter and calving and lambing at the same time. Thank goodness we didn't breed any mares last year. We had a lot to deal with. Don't be affraid to ask any family or friends for help. Most of the time they will be more than willing to help.

    It is so scary now, but after it is all said and done, you will feel so much better. It is because you are going into an unknown zone for yourself. Being scared is very normal for a parent. I would question you if you weren't scared. I didn't sleep, eat, function, or anything for the four weeks prior to my daughters surgery. I finally slept real good three nights before surgery. I don't know if I was finally accepting it or I was absolutely exhausted.

    I will keep you in my prayers as you prepare for surgery. Do see if you can get into the Shriner's clinic. Remember, the specialize in children. That's all they do.

    'til later,
    Nikki

  4. #19
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75

    Link.

    Twinsmom,

    I hope you got the address that I sent you through private messaging for the support group and information regarding Klippel Feil Syndrome. I also just wanted to say hello again and God Bless you both, your email and message on this message board brings back sad and happy memories for both my wife and me. As you may recall my daughter has Klippel Feil, and had a spinal fusion at the age of twelve. We have a lot in common between us, and most of the wonderful people on this site also, truely understands your flight, and fears. Your not alone, and we are all with you and your family, may God Bless you.
    Live long and prosper!

  5. #20
    twinsmom Guest

    Thank You

    Thank you all for all of your kind words and thoughts. You do start to feel like you are the only people on the planet that have ever gone through this. Ironically, I have been feeling "lucky" that this is all my son is going through. There are so many kids out there with much worse special needs that we should be thankful. However, the impending surgery, etc. does make you crazy at times too.
    We totally understand the craziness... besides buying the new house... my parents have bought a horse farm and we have 25 acres of fencing to put up and 17 stalls to get ready- I have one horse here that needs constant attention (I'm praying that I find temporary board near us for a month or so), another gelding (lesson horse) to pick up in VA, our stallion in OH and my mom and step-dad's horses- 2 here and a pregnant mare and foal being shipped from the Netherland's this week (Friesians).... All of a sudden it occurred to me that Brayden would be in the hospital for a few days... OH YEAH! What about his twin sister, our 2 goldens, and 2 cats? OH and my unemployment is running out and I need to find a job. AAAAAAHHHHHHH OK- now that I've vented.... Speaking of which... does anyone know if there is such a thing as disability to take care of a child?
    We are definitely going to the Shriner's clinic this Saturday.... with hopes and prayers that they might have another suggestion. We have our Dr.'s narrative (with the exception of the most recent CAT scan) and some x-rays. Hopefully, that will give us a chance.... Thank you all again for all of your support. I wish none of our children had these problems but it does give me courage to know that you've all made it through.... I can too. (I hope )

  6. #21
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Twinsmom,
    I am glad to see that moving your household is like moving my household. It wouldn't be so hard, but like you we have this incredible attachment to our animals. I didn't know if you would understand the hecticness of feeding, calving, lambing, etc. But, if you have broodmares, you understand it just as well. We didn't breed our QH broodmare last year. She presented us with a beautiful breeding stock filly. Red Dun with a dorsal strip. We were going to sell her, but she has really blossomed this spring and are going to prep her for halter and lounge line in the fall. It seems we are always having to fence, refence, or fix fence on a continuous matter. I think I have landed a job, but it will require us to move within six months. I got a call today for permissio for the company to run a criminal record check on me, so they must be serious about hiring me. I will keep your move and your sons surgery in my prayers. I am having to sort through boxes as I write just to get things under control for a possible move in six months.

    God Bless You.

    'til later,
    Nikki

  7. #22
    Join Date
    Apr 2005
    Location
    houston,texas
    Posts
    11
    twinsmom,
    you can apply for SSI for a disababled child but your income between your husband and yourself has to be kinda low. each state varies but you can easily pull it up on the internet. good luck and God bless.
    megan
    megangilbride1@yahoo.com

  8. #23
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75

    Ssi

    Twinsmom,

    Sure hope and pray that everything is going as good as can be expected for your family, as for disability benefits, their are many non-profits, and organizations that you may not know of that can provide assistance from financial, education, information and advocacy. I would recommend that you locate the closest Center for Independent Living or Disability Rights Organization Group for further information. You will find that each state has different programs and qualification proceedures for benefits, and some will be better then others.
    As for Supplemental Security Income (SSI), it is set by each state and is paid by the federal government. It is mostly directed related to your income and financial abilities, again it is up to your state elibility requirements.
    Sometimes, if a child is not able to become employed in the future or is expected to be dependent on the parents or parent for financial support for necessary living expences, then you may be able to get Social Security Disabiity Benefits for that child based on the father earnings. Again this is a somewhat complicated and it is a very individual medical judgement. After saying this, most people with Scoliosis and/or surgery are employable and do lead a successful normal life. God Bless...
    Live long and prosper!

  9. #24
    Join Date
    Mar 2005
    Location
    Kannapolis, North Carolina, near Charlotte
    Posts
    373
    Twinsmom, I am also a twins mom, but mine are 14, and another age 13. Regarding you employment status, I notice your occupation is teacher. I thought teachers were hard to come by? Or is it just in NC? Of course, if you are avoiding work now due to the need to stay with your children, as I did, then it doesn't matter what your career is, you can't work now anyway. What is your degree in? God be with you tomorrow at Shriners! Kris

  10. #25
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    You don't want to be a teacher in Oregon. Public Schools are cutting back all the time, and some closing right and left due to budget short falls. We have a friend that is finishing her teaching degree. She realizes that she will have to relocate to another state most likely. Another relocated to Alaska after he finished is teaching degree last year. So, Oregon isn't the place to be a teacher.

    You will be in our thoughts and prayers at Shriners tomorrow.
    'til later,
    Nikki

  11. #26
    twinsmom Guest

    Teachers

    We have our fingers crossed and are anxiously awaiting our appt. with Shriners tomorrow. I fully believe that my son will be fine after whatever surgery is done. We know something will have to be done but the question is what and when. We just want the curve to stop for now and see where we go from here.
    As far as teaching goes.... HA! In NY we were required to have our Masters degrees. I have a bachelors in PE so I did my Masters in Health Ed. so that I could find a job in a state (like PA) that requires a dual certification. It seems like because I have a Masters, the school districts want to hire someone they don't have to pay as much. Needless to say, we moved mid-school year and that's impossible on it's own. I'm hoping to get a job for the fall. I miss it a lot. On the other hand, I've loved being home with my kids. Tough situation. I also teach horseback riding. Once we find out what is going on with Brayden, I'll be more flexible in my decisions for a job and hopefully by then, the interviewing will start for next school year.

    I can hope. Thank you all for your prayers - keep them up for tomorrow and I'll post what happens!

  12. #27
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75

    Employment

    Hi Twinsmom,

    My professional experience is with disability rights and employment, it is understandable an issue that many of us with a disabilty face more than the so called (TAB) temporarily able body. So regarding your possible employment as a teacher, one of the highest areas of employment opportunities is with the non-profits. Of course the pay is low, but usually the benefits are great, I would highly recommend and suggest that if you would like to keep in the field of expertise that you check with any Headstart programs within your community. Opportunities for employment are usually high in this area, like I said the pay is not that great, but many employers will offer great benefits. Sometimes including forgiveness of student loans leading to your teaching degree, continuing credits, educational benefits and flex time. God Bless....
    Live long and prosper!

  13. #28
    Mary Lou Guest
    twinsmom,

    Good luck tomorrow. Let us know a.s.a.p. how things go and what they say. Remember, you can still cancel your appointment on Monday and/or surgery until you are 100% sure of what you feel is right for your son.

    Mary Lou

  14. #29
    Join Date
    May 2005
    Location
    Sutton, Ontario, Canada
    Posts
    3

    surgery

    To the Twins mom, I was just wondering how everything went please let us alll know.

  15. #30
    Join Date
    Mar 2004
    Posts
    1,140
    Karey/Desperate,

    I received your P/M, did you get my reply ? I can't seem to find it in the "sent" file.







    Celia

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