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On being scared, worried ...

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  • #16
    So I have regained some perspective and seriously charged m batteries tonight. I took my darling boy out to a speical mommy/son dinner at a "grown up" restaurant and we had the BEST time. He is at such a wonderful age where he can converse like a grown up but is so cute since he is just a little kid. He was so well behaved and all the waitresses fawned over how cute he was. He is having serious ear surgery next month and we talked alot about it and he is excited to go to special "doctor sleep" since nothing will hurt then vs. just regular sleep. He is such a GREAT kid, seriously. Then we came home and played all together in bed and giggled, laughed, told stories, talked about things and just had a truly wonderful family time. It was this that I missed most and I got some of it again tonight.

    I have eagerly read Iand reread) all these responses and I cannot tell you how grateful I am to this community and the collective wisdom and incredible kindness of people who take the time to help me/us despite never meeting us. If I can ever repay this kindness, please just ask and it's yours.

    So short story, I'm feeling alot better about how to plan the next round of attacks on figuring out his health issues. And recharing. And at least one thing good that may come of it is that I betcha no one, not a single soul, thinks I'm a devo now!! *sly grin*

    THANK YOU ALL, you have no idea how much you have helped me today.
    Last edited by zillazangel; 04-23-2006, 12:13 AM.
    Wife of Chad (C4/5 since 1988), mom of a great teenager


    • #17
      It's threads like this that remind me what CC does for injured people and their loved ones every day. You'll sort it Ami - your determination and love shine through all the shit.
      C5/6 incomplete

      "I assume you all have guns and crack....."


      • #18

        While my brother did not have SCI...he did have the seizures that Chad seems to be experiencing. They are scary....and I feel your pain as you two work through them. I remember him not knowing who I was for 2 days...and doctors telling me well...that sometimes happens. Well...I did not want that to happen. I wanted my little brother back the way he was.

        It may be as easy as putting him on Dilantin (sorry if that is spelled wrong), which is what they did for my brother. There seems to be no ill affects from the seizures since then...and he is back to his old self (which, depending upon how you look at it...could be a good or a bad thing ).

        Basically, what I am trying to say is take the information that has been given to you...and find someone who will listen. It is not easy to watch a loved one go through this...but it is even harder to have doctors act like they know everything...when in the end...they do not. If you need anything...let me know...I am here for you too...just like everyone else here on this board. I will be thinking about you, and hoping for quick (and correct) answers.
        "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss


        • #19
          Dumb but easy question Ami. Does the yeast smell? I mean after bathing and drying and going back 2 hours later is there an odor about him?

          Has he had a recent MRI or CT from top of skull down to brain stem/C1/2?

          And I tell ya, once we go down getting back up takes time. This past winter started with pleurisy and everything went down from there. I lived in bed, worked the phone from bed and only made it to the DC Friday night because I was loopy on Percoset and Aleve. Sorry for the inappropriate jokes Wise. But I have eaten more vitamins, cut back on meds like Darvocet and Ambien and take Tylenol PM instead now and force myself to eat high protien foods and take extra vitamin C. The C seems to help with yeast as well as things like DanActive Lite drinks.

          I have willed myself into our cruise this Friday! So no, even from this side you don't sound selfish. Glad you had a good day out with your son. Hang in there gal. Just one day at a time.

          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.


          • #20
            JohnnyBOY4U , I moved your question into it's own thread here
            Every day I wake up is a good one .


            • #21
              wow ami...i missed this post. so sorry to hear what's going on with chad. i echo what rehab's times like this when cc shines...helping others. that's what it's all about. jim and i will be thinking about u both. please take care!

              and in the end it's not the years in your life that count it's the life in your years. abraham lincoln


              • #22
                Ami, I don't have any other answers to contribute, but I will be praying for Chad.


                • #23
                  Thank you Michael.
                  Wife of Chad (C4/5 since 1988), mom of a great teenager


                  • #24
                    hi, Ami

                    can i say how great it was to meet you and Chad and that incredibly gorgeous little boy?

                    people, zilla's tiny son sat through a very grown up luncheon as if it were an everyday event . . . the woman who heads up sci research projects at NIH (Naomi Kleitman ?) did a powerpoint presentation, and jj held his own with a bit of playdough.

                    here's hoping you three made it home okay.



                    • #25
                      Hi Ami~
                      It was great to meet you as well as Chad and the little guy. I never saw you again after Sunday, you guys ok?
                      Every day I wake up is a good one


                      • #26
                        Originally posted by cheesecake
                        Hi Ami~
                        It was great to meet you as well as Chad and the little guy. I never saw you again after Sunday, you guys ok?
                        We all got lost in our Suite at JW Marriot
                        Nice to see you again Cheesecake and to get to meet you Kate!
                        P.S. I think its ok to say they are visiting some of their family, we got in touch yesterday.
                        Last edited by Lizbv; 05-04-2006, 04:42 PM.


                        • #27
                          Thanks Liz, I have been known to worry. Guess you moved from the Doubletree. Hope the hockey was good.
                          Every day I wake up is a good one


                          • #28
                            Ami, it was such a pleasure to see you and your husband. Wise.