Opsoclonus Myoclonus Syndrome

Reflecting on Getting Fitted for a Wheelchair

Getting Fitted for a Wheelchair

The Wheelchair was fitted for Hunter.

Getting Fitted for a Wheelchair.  This is what Hunter and I did today.  My heart simply aches.  I know this is for the best, but this is cruel and unusual punishment for me.  I guess I should be thankful, but right now, I’m just pissed.  There are so many things I’m pissed about.  The doctor(s) that misdiagnosed him, the loss of function, this stupid chair.

When Life Knocks the Wind Out of You

I guess one just moves on one breath at a time.  Somedays, I find it hard to breathe, though.  There are moments that I just sit and cry.  I simply do not know where to go from here.  Today, I just breathe.  Here are more thoughts on Getting a Second Opinion, and dealing with the egos of other doctors.  It is exhausting.  All people should just want the best for this little boy.  However, pride gets in the way every single time.

UPDATE

This post was made in 2018.  Now, in May of 2019, I am happy to say that we are wheelchair, gait walker, and wheelchair ramp FREE.  His legs are getting stronger, by the day.  Sadly, his arms/hands are now shaking.  It seems as if the disease is picking and choosing what part of his body it will attack.  Furthermore, he is starting school in the fall.  We hope he can stay in but we do have to live in reality.  On the one hand, we want him in school.  On the other hand, we know that his immune system will be challenged.

 

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