Urology update

Today Lillian had her bi-yearly renal ultrasound and dr visit.  Her kidneys have grown considerably.  They were happy with that.  She didn't show any hydronephrosis, which was good.  She has not had any UTI's or infections, so that is all good.  There was, however, quite a bit of drama when we arrived, because a) we have to travel over an hour to get there, b) we have to push water through her tube to make sure her bladder is full, so c) when we get there she has to "go" so badly she is freaking out because she thinks she's going to pee her pants.  I had to physically restrain her on the table for them to get the initial pictures with the full bladder.  We then race to the bathroom and someone is in there.  (side note, does anyone think it's odd that a urology office only has ONE toilet...for PEDS?) Stressful.  Lots of stress.  After she emptied, which was a LOT, we went back and they said she was still pretty full.  So, back to the potty we went.

If she begins to have infections or incontinent issues, the testing they will need to do have to ramp up.  She said she might need a urodynamics test in the future to test her bladder pressures.  The bladder has more risk of problems because of her chromosome abnormality.  The vesicoureteral reflux will not be addressed unless she becomes symptomatic with infections.  All in all a great visit, minus the arrival drama.


Sunday I was having a bad " mental day".   I had wanted to make a visit somewhere (because we are basically homebound except for dr visits and those we try to push out of the winter as far as possible) I was suffering a little housatosis, but there was always one place I could go safely without concern for getting sick.  That place has been taken away from me.  I was sad and I still am.....just please when you think of us, say a tiny prayer for me.  There are things in my life that I'm settled with, but sometimes the grief of it all washes over me and there's nothing I can do about it.  I have moments of overwhelming discouragement from time to time. So friend, I leave you with this, are you weak and heavy laden?  Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.  Take my yoke upon you. Let me teach you because I am humble and gentle at heart, and you will find REST FOR YOUR SOULS. For my yoke is easy to bear and burden I give you is light. " Matthew 11 : 28-30  I'll rest my soul there.