He's back, almost.

Yesterday, for the first time in over two weeks, I saw a glimmer of my old Spencer coming back!  I still haven't heard from any doctor about what to do to help him.  I'm bugged about it.  I wonder if doctors really know what parents of sick children feel like?  Do they know how helpless and terrifying this can feel?  Do they know what it feels like to hear your child say, "Do something!  Help me!  I think I am dying!"  I wonder if they really care or if an email entitled "Help" is just a signal to move on to other things.  Maybe they have way more important things to do, sicker kids to care for and of course, they do have families and I get that but it still feels very isolating when there is NO ONE to turn to.  I could take him to our regular doctor but they have already told me that problems like this are way out of their league. Our Oncologist emailed back and said he was on vacation.  I totally respect that but I can't help but feel a twinge of resentment because I'm not on vacation, I am sitting here watching my son deteriorate before my eyes.  I can't remember the last time I had a vacation.  A time when I could vacate all the worry, stress, illness....I guess it's more about me than it is about them. 

   Our GI did get back to me, he said it could be botulism.  I read about that but it sounds way off and he would be way sicker if it was that so I'm not even going to pursue that avenue.  Yesterday, his energy had improved a lot.  He still had problems with his tremor, nausea and pain but he could move.  The nausea passed after a few hours and so did the pain. 

    Today, he is going to try to go Snowboarding up at Targhee.  I am not happy about that!  NOT at all!  I want him home sitting on the couch, conserving his energy!  Even the healthy version of Spencer can not manage a full day of snowboarding.  In the past, he gets sick every time because of the exertion.  He spends two days completely drained.  I'm kind of anxious to see what happens and if he can even make it through a full day on the slopes!  In all my anxiety over his activities today, I know that he needs this fun time.  He needs to hang with his friends and he needs to do something that makes him happy.  Feeling so horrible for so long has taken a toll on him emotionally, not just physically.

    There is no doubt in my mind that this boy has mitochondrial disease. 


  1. aaahhh I am sorry! I wish I could releive some of your stress.


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