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    #91
    Good Luck!

    Good luck to BOTH Jake and Birde! Keep us posted!

    Maceyka
    Maceyka

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      #92
      You have healing thoughts headed towards Jake right now, Joe. Can I ask why your family chose Dr Kao and not someone closer like in Miami for Jake's syringomyelia surgery? And that is a terrific web site you have. Nie way to keep everyone in your extended family and all your friends including us here at CareCure up to date. [img]/forum/images/smilies/smile.gif[/img]
      Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

      Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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        #93
        Kao over Miami

        Thanks for your nice comments on the site.My hope is to make a detailed web site, so when the next father is faced with our decisions, he will have some resources to help. First off since Jake is not 18 he would not qualify to enter into the Miami Project. Second we could enter any major University hospital like Miami or UAB where Jake spent 3 months and they could treat the syringomeglia. However, they would not do the other experimental procedures which could lead to Jake walking with the aid of boots and a walker and make him a para instead of a quad. We spent time at UAB, Shepherds, and the Schriner's Hospital in Philly and all said that there was no hope for Jake to walk again during this decade. Only Dr. Kao with his majic touch and gentle ways offered us hope. He said that he had worked on a number of quads with syringo, and they are doing very well now. What would you do, if it was your son? My son is already too tired of being a quad!

        Sincerely:

        JJG
        Jake's Pop

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          #94
          Jgiambro,

          Have you guys considered Dr. Cheng's nerve growth cocktail or Russia's stem cell injections? Their procedures are much less invasive, risky and require less recuperation time. Maybe you can go to Miami to have to syingo. fixed and then to Taiwan or Russia for the cure therapies. The travelling costs are about the same.

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            #95
            I think I'd be doing what you and your son are doing, Joe. I didn't realize that Miami did not work with those under 18. Seems rather rule heavy to me. I mean it's not like teenagers have less need of independence.
            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

            Comment


              #96
              Equador and Dr. Kao

              Please keep our whole family in your prayers as we travel to Ecuador on Sunday. If we get there and find out it's not as we expected, or don't feel comfortable with the surgery, we will not have the surgery. We need prayers for discernment to make the best choices for him. For continued information, please see his website at www.jake15.com. We could go for the surgery in Miami to correct the syringomegalia and then somewhere else for cell injections, but we would like to have the whole thing done at one time. We have talked with other patients that have had syringo, and then got the entire treatment from Dr. Kao. They are very satisfied. We are all extremely nervous and can't get sleep at night.

              Sincerely:

              JJ [img]/forum/images/smilies/confused.gif[/img]
              Jake's Pop

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                #97
                Good luck and best wishes for Jake! [img]/forum/images/smilies/smile.gif[/img]

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                  #98
                  I hope everything goes well and let us know. Wise.

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                    #99
                    Has anyone heard?

                    From Birde or Runningbear?

                    (Are these names from a Kevin Costner movie. Where's Twosox?)

                    Just a little joke.

                    signed,
                    Dances with Wolves

                    Comment


                      recovery

                      All are doing well and having some small return in function/ and or sensations.


                      JJG
                      Jake's Pop

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                        JJG, that is great! I am so glad that you saw Birde and Ed http://carecure.org/forum/showthread.php?t=14057 and please say hi to her and Ed for us. Wise.

                        Comment


                          Greetings from Ecuador!!!

                          Hello all of you! We have a few minor problems here in Ecuador (none that have any relation with the operation)...our laptop was stolen at the Quito airport the evening we arrived as well as travelers checks!!! So Teddy and Ed have lent me theres today (very nice of them). To get on line is difficult (to say the least) and once on, it is soooo SLOW!!!! We are doing well. The operation was a success and was the longest one this time around (12 1/2 hours)for the Americans. Today Dr. Kao is in surgery with an Ecuadorian with cancer (something about 3 tumors on his spine). This is expected to be a 20 hour operation. There are 2 Ecuadorians who had Dr. Kao's procedure, and 8 Americans this time around. The last operation will be tomorrow. We have leg and foot movement though!!! Jake as you read had a very small movement last night...we have very large, strong, easy to see movement. Toes on both feet can and do move on command, as does the feet and thighs!!! The abdomen is stronger and sensory level has dropped down about an inch on the right side and 2 inches on the left side already!!! B.T.W. I am NOT MARRIED TO ED (as jakes dad had posted!!!!)-Ed is with Teddy Lancaster(his companion)-Jake´s dad was only here a few days and for that reason I can understand that his story was a bit off. The medical attention is good here, 2 Americans have had dental work, one has had hemeroid(sp?) operation, and 2 have had breast surgeries too!!! They all seem pleased. We come home on Friday and at that time I can and will answer all questions. We are very pleased thus far, we will be standing tomorrow and taking the first steps Thursday with the Italian boots!!!!! [img]/forum/images/smilies/biggrin.gif[/img]

                          [This message was edited by Birde on September 06, 2001 at 08:14 AM.]

                          Comment


                            Hello
                            First, I want to say good luck to Jake. I just read posting about Jake recovery. So exciting to know that he moves his legs.
                            My question now :
                            I m c4 complete since 1991 (hockey accident ). I m paralysed shoulders to toes.
                            I m interested to go to Equador for this surgery.
                            What are the steps to follow?
                            How to know if I m a good candidate for that treatment ?
                            All informations you will give to me, will be largely appreciated.
                            Thanks a lot

                            Comment


                              Paul and Curtis-

                              I was fooled too, I thought Birde was in a wheel chair. Her initial post on this thread states she has a T10 injury. She also on many other occasions, made comments that would lead you to believe she has a sci. I wonder why she never mentioned otherwise?

                              bill

                              Comment


                                Maybe she is a Wannabe? EOM.

                                eom.
                                "Life is about how you
                                respond to not only the
                                challenges you're dealt but
                                the challenges you seek...If
                                you have no goals, no
                                mountains to climb, your
                                soul dies".~Liz Fordred

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