July 25th, 2011 by Hope

Long time no post

I took some time off blogging, but I’m back :)

Ava’s medport went in just fine.  With the exception of strep colonization at the port site, all is well.  She doesn’t love being accessed at all, but she’s getting less terrified.  Her Mitchondrial disease is starting to progress.  Her liver is enlarged, her motility is terrible, she’s acidotic, etc….  She’s now on neurontin for chronic nerve pain (neuropathy).

She’s also sweet, happy, and spoiled rotten.

Her heart is showing some effects, mainly thickening of the valves.  Cardiology wants her tested for Danon disease (Lamp-2).  GI wants a liver biopsy.  Neurology wants a lumbar puncture.  I’m sure I don’t need to tell anyone my thoughts on these tests.  We are having a big appt with multiple specialties next month to get a game plan.  If they all decide these tests are needed, they WILL be done at one time, and they will get everything needed, because they will NOT repeat these tests again.

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