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This is one of those posts that is more for me than you, but it will keep you up to speed on what's going on.

Eve is well.  She's been relatively healthy.  She had a UTI recently, so we have a VCUG scheduled at Baystate later in the month.  It will definitely not be pleasant for her, but we will be able to see if her kidney reflux is not resolved as previously thought.  That same day we have an appt with the neuro.  Jim will be with me for both appointments, which is a huge help.  The following week we will have a followup with the pediatric surgeon (who really functions as a pediatric urologist) to discuss the results of the VCUG.  I was also able to schedule an appointment with a physiatrist in Boston for the same day we are headed there this summer for Eve's mito doc appointment.  I am hoping this is a better fit than the last physiatrist that we saw a year ago.  Eve's functioning has changed, so we also may need this appointment more than we did last December.

Eve seems to be having more trouble adjusting herself throughout the night.  She always sleeps on her stomach and until now has had no problem shifting her head from one direction to the other.  Lately she often wakes up crying with her arms flailing up and behind her.  She seems to be struggling to get a purchase on the mattress to adjust her body.  She just doesn't seem comfortable.  Some nights are good (0-2 wakeups) and some nights are bad (approx 15 wakeups).  It's been tough.  We'll mention this to the neuro and to the mito doc and physiatrist. 

I am also concerned that doesn't seem to be tolerating her stander.  This has been an issue for a while at school, but not at home.  Over the last 2 weeks it has happened at home as well.  We are not sure if she just doesn't have the strength anymore or if it is just no longer comfortable. 

Oma and Pop came for a visit this past week (and I can't believe I didn't take a single picture!!).  Eve had a blast.  So much so that when they left she was a pain in the butt.  But, after a week of their undivided attention, it was an adjustment back to Mom and Dad who need to actually do stuff.  Today was back to school and I sang a song about it (literally) this morning.  Yay!  All else is well.