4/23

Unfortunately things haven't been going so well for Anya these past few weeks.  She's probably only had 4 or 5 good days in the past 3 weeks.  Following her surgery the vomiting episodes seemed to be reduced to lasting only an hour or two where she would just bring up mucus, be lethargic for a bit but then quickly snap out of it.  Lately however she's been sick most of the days, most of the day and night.  Her sleep has reverted back to terrible, up by around 1a.m. each morning and staying wide awake until around 7am.  Although at these times she not sick, in fact just the opposite, she is happy and just wants attention.  When she does "sleep" through the night it is actually more that she just happens to be lethargic and retching up mucus during the night.  Last year at this time was also a really bad period for her. We suspect her 'normal' issues may just be exasperated now by seasonal allergies.  We are seeing an allergist May 26th.  Last time we tried to see an allergist they blamed her vomiting thick mucus on the likely Mitochondrial disease. Now that Mito is off the table we'll see what they can come up with.

One interesting thing (to us at least) is that she is no longer biting her hands. I think she may have done it once since surgery but that seemed to be more by accident. Heck we all accidentally bite our hand once in a while, right?   So no more hand biting, but we're back to no sleeping and lots of mucus.  I probably goes without saying but we are both getting very tired and frustrated by this.  Watching your child suffer day after day after wasted day... I know things could be a whole lot worse and our hearts are constantly out to those parents whose kids are seizing non-stop and/or suffering chronic pain.  It is difficult to see so much hope in Anya's eyes but to not have yet broken through.

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