Thursday, May 27, 2010

Hope, Peace and Love.

 We have yet to know the specific 'name' of the disease that Wyatt is battling. His team of doctors suspect that it's a Mitochondrial Disease and in the paperwork that we have it states that he has "probable Mitochondrial disease". But, in reality, we don't truly know what's taking our son's body captive piece by piece. Not knowing is incredibly hard. The doctors talk about "progression" of the disease....we know this, we've seen it with our own eyes. And when I hear them talk of the progression of this disease the words are screaming in my head "BUT WHAT DISEASE?!?" They don't know.
 During the 3 weeks that Wyatt was inpatient his neurologist sent a referral letter along with his medical records to a specialty doctor that is located in Atlanta, Ga. We've been talking with the neurologist about this doctor for well over a year now and, at this point, it seems this is our next step.
 We will be traveling to Georgia and meeting with the doctor on June 16th. Wyatt will have a Resting Metabolic Rate (RMR) test a few hours prior to the consultation. On June 17th he will have a muscle biopsy along with an additional spinal tap.
 We have hope that there is a doctor that will be able to tell us what is causing our son such pain and discomfort. We understand that there may not be a cure at this time, but we have hope.
 We also have peace. We understand what "progression" means and what is happening in his body. It's scary, but we have peace.
 We know love, we feel love. What is happening is out of our control, but we have unconditional love.

*The backpack that Wyatt is wearing in most pictures carries the formula that is feeding him through the feeding tube. It is able to hang on the back of his wheelchair when he's sitting and is small and light enough for him to carry on his back when he is on the move.
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  1. You kids are beautiful! Dr. Schoffner is Amazing.

  2. Just checking up on your sweet boy...Im glad you have plans to see Dr. S. I pray you get some answers and hopefully pain relief. BIG hugs and prayers-

    Heidi & Jack
    {love the pics, sweet}

  3. Your family popped into my head today so I had to come see how you were all doing. {{{HUGS}}}
    ~Libbe (& Rebecca)