Wheres the handout or the Muscular Dystrophy Answers to Heartbreaking Questions book? Camden always seems to ask these when its just him and I alone in the van. Today it started like this on the way to physical therapy... Me: Today they are going to be doing muscle strength evaluations. Dr. Moser wants them to be done monthly to see if the monthly infusions and daily steroids are helping. Camden: So no needles or MRI or muscle biopsy, right? (Poor kid, you think hes sick of being a human pin cushion, blood bank and body to test and dissect?) Me: No baby, I promise nothing like that. Miss Tiffany is just going to see how your muscles are doing with the strength exams we do at the Dr and some timed tests. Youll do great! Camden: (smiles now) Oh, ok. Thats good, right? So we can see how the steroids start making me strong and where I wont have muscle weakness anymore and can get up! Me: (heart plummeting) Well baby, we are just trying this to see if it helps a little. We dont know if it will but we are going to try, right? Camden: Ok, Ill try. So it wont fix me? Theres no easy way to let down a 7 year old boy. You cant tell him its progressive degenerative, uncurable, terminal... So what do you say? I dont want to give false hope nor do I want to take away the hope he has to get better. What hurts is knowing he thinks he still might. Then what do you do when he becomes nonambulatory in the next couple years or less? All I want to know is where is the freaking hand book?! We should at least get that... How to Break Your Childs Heart: 101 - Living with a Monster Disease.
Posted on: Wed, 05 Nov 2014 21:56:49 +0000
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