Lots of changes

Saw 2 Dr.'s yesterday and 1 we will see one more later today.

We have a new bowel plan.  We really really hope it works because the milk of magnesia DID NOT!

We upped her calories a bit, she has been losing a bit of weight over the last year.  Right now she gets 1 C. of the powdered formula for the whole day (it is mixed with water of course).  The dietician wanted to up it to 1 1/2 C. per day.  That seems like a LOT more.  I talked her in to 1 1/4 C. But she wants to see her back in 3 months instead of our normal 6 or 12 months).  I am scared of her gaining too much weight because one time when she was a baby a Primary Children's Dietician figured out her calories but forgot to take into account her activity level (extrememly low) and we started feeding her and she was gaining a pound a week and became literally REALLY FAT.  Also...every pound she gains I have to lift every day...multiple times per day.  So I REALLY don't want her to gain more weight...Ever!

45 pounds is the ideal maximum weight of a child with severe disabilities in my opinion.  You can can still lift them with no problem to chair, bed, floor, couch, bath.  Beyond that IT GETS HARD!  Ellie weighs 63 pounds.

We are changing her calcium because her current calcium also had vitamin D...and her vitamin D levels were high.  So now we have to find a powder or liquid calcium with no vitamin D and no magnesium...I am anticipating this will be hard.  They add the magnesium to help with absorption and Vitamin D because...I don't know...??

She normally gets some salt added to her formula to help with electrolytes...we will be switching back to something called "Lite Salt" because lite salt is potassium chloride instead of sodium chloride (like regular salt).  This is due to her potassium being low.  We did the Lite Salt a few years ago...but her potassium got high so we switched to regular salt.

I know this is all boring, boring, boring...but isn't that mostly what life is???

Today we go get blood work done (ordered by the dietician yesterday), a CT scan (for shunt) and shunt series (x-rays).  And then meet with the neurosurgeon.  I just want her shunt checked out.  She has been getting sleepy when I sit her up and then sleepy when I lay her down.  Several years ago when she was doing this same thing the neurosurgeon was sure this was a sign of the shunt malfunctioning so she had surgery to redo it.  It didn't really help.  And the surgeon afterwards thought it probably didn't need to be done (except that the tubing was cracking in her neck...so that was good it got replaced).  The neurosurgery nurse does not think that this sounds like a shunt problem, but I really want to get it checked out non-the-less.