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  1. Replies
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    What is a 504 plan? I have never heard of this?

    What is a 504 plan? I have never heard of this?
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    Wow, that is an amazing correction! I'm amazed...

    Wow, that is an amazing correction! I'm amazed at what type of correction these surgeons are able to achieve. You must be so happy! :)
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    Like the others have said it looks like you have...

    Like the others have said it looks like you have a mild curve. Probably in the 20 degree range. Your back looks similar to mine. I didn't find out about my scoliosis til I was an adult and had an...
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    Hi, there! Linda is right, I think it is harder...

    Hi, there!
    Linda is right, I think it is harder for us parents to take. You did everything you could to prevent the curve from progressing with going through the bracing for a couple of years. We...
  5. Thread: Blood

    by blackwidow
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    I know when my son had his hip surgery I asked if...

    I know when my son had his hip surgery I asked if I could donate blood since I'm the same blood type but they told me I couldn't because I was his mother and the blood bank wouldn't do it because of...
  6. Thread: Blood

    by blackwidow
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    I know when my son needed a transfusion a couple...

    I know when my son needed a transfusion a couple of days after his hip surgery (high blood loss with that surgery too) they did it through his IV line. I remember they had to run the blood slowly...
  7. Thread: Blood

    by blackwidow
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    Hi, Lesly I would definitely discuss this with...

    Hi, Lesly
    I would definitely discuss this with your doctor. With this surgery there is higher blood loss. My son I found out before surgery through blood tests was slightly factor VII deficient. ...
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    Sue, I read your post earlier today and I'm...

    Sue,
    I read your post earlier today and I'm deeply saddened to hear about Amanda. These kids go through so much that it is heartbreaking. You do everything you can to give them the best life...
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    Hi, Erin My son has the same issue with his...

    Hi, Erin
    My son has the same issue with his hands he has high spasticity since an infant and he curls his thumb in his palm too. Still does even now. He had plastic hand splints when he was...
  10. Thread: New Here...

    by blackwidow
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    Hi, Kerina I know that by 8 years old the lungs...

    Hi, Kerina
    I know that by 8 years old the lungs are fully mature. So spinal fusion could be considered at that time.
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    So good to hear that the chest tube has come out!...

    So good to hear that the chest tube has come out! I hope she continues to improve and do well! ;)
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    Hi, there! My son and I live in the Milwaukee...

    Hi, there!
    My son and I live in the Milwaukee area. Good to see someone from Wisconsin on here. There are not too many of us on here as far as I know. Not familar with Dr. Rigo, though.
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    Thanks, Karen and Linda.

    Thanks, Karen and Linda.
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    Strange dark scab/bumps behind knees

    I know this is going to sound strange and I'm hoping someone will be able to answer my question. If not, I will have to remember on my son's next dr. appt to ask this question. I noticed after my...
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    It sounds like you have done your homework with...

    It sounds like you have done your homework with several opinions and getting the specialists to talk things over with each other. Are they able to test her lung capacity right now or if she has been...
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    Hello, Have you gotten her pulmonologist and...

    Hello,
    Have you gotten her pulmonologist and orthopedic surgeon and possibly other doctors who are involved in her care to speak with each other about the pros and cons of either surgery? To help...
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    I'm sorry to hear about Amanda too. It breaks my...

    I'm sorry to hear about Amanda too. It breaks my heart to hear that she has pneumonia. I know it is rough when they have it. It sounds like you were on top of things and got her in right away so...
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    I agree with Caroline that you are very mature...

    I agree with Caroline that you are very mature for your age and are empathetic towards others. Being a parent of a child with cerebral palsy I often see a lot of children and even sometimes you will...
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    Hi, Amanda's mom I had been following your posts...

    Hi, Amanda's mom
    I had been following your posts about your daughter. Amanda sure has been through a lot and you as well. 42 days in the hospital is a very long time. Good for you that you arranged...
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    My son has neuromuscular scoliosis. He did...

    My son has neuromuscular scoliosis. He did develop breathing problems from the scoliosis. On his first checkup he was 40 degrees and he has a thoracic curve. At that time I noticed he was having...
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    Yes, his GI problems are resolved. They didn't...

    Yes, his GI problems are resolved. They didn't find anything wrong on the upper GI study. It turns out his sodium level was low which can make you nauseous. Also his GI doctor thinks his system...
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    6 week follow-up

    My son had his 6 week post op appt. today and I found out that his curve is now 25 degrees was 65 degrees before surgery. I was a little surprised since the spine looks pretty straight now. I guess...
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    Linda is right I remember my son's doc telling me...

    Linda is right I remember my son's doc telling me that too. Once the curve is around 100+ degrees then it starts to compromise the lungs and heart. Although there are exceptions to this rule as I...
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    Hi, Jsully I'm a bit skeptical about the...

    Hi, Jsully
    I'm a bit skeptical about the attitude of your 3rd opinion doc. My understanding too was that thoracic curves when they get too big do affect the lungs and heart. My son has...
  25. Thread: New Here...

    by blackwidow
    Replies
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    10,566

    Hi, Kerina Is she in the birth-3 program for...

    Hi, Kerina
    Is she in the birth-3 program for PT/OT? I'm assuming that is what you mean. If she has started seeing PT/OT I would stay and watch the therapists work with her and you can see what kind...
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