Thursday, March 21, 2013

another cystinosis appointment with dr. nelson





Next week Lars will be eight months old.  He is doing just fine.  Our one concern is that he dropped from the 94th to the 70th percentile for length and from the 80th to the 56th in weight.  This wouldn't concern most parents because he's still a pretty big boy.  However, getting a kid with cystinosis to gain weight (or even eat a chip) is incredibly difficult sometimes.  Luckily Lars likes food.  I just fed him two bowls of rice cereal, a jar of carrots and a jar of squash.  Now he's eating puffs.   Tonight I'll add butter to his puffs.  We'll get him back up to speed.

Also, renal function levels still look perfect.  There is nothing about him that might suggest he has a disease.  Blood work and growth look great.  When Sam was at this age he was falling lower and lower on the charts,  his head was too big for his little body, he wasn't standing with help, he gagged every time he saw a puff, and he was drinking water excessively (and then he'd throw it up).  

This whole early diagnosis thingy is really working out for us. 


On a dimmer note, Dr. Nelson says Sam will most likely need his kidney transplant while he's in high school.  We have been PERFECT with his medication.  I NEVER miss a dose.  I haven't accepted this yet.  I'm probably in denial but I think Dr. Nelson is wrong.   Naivety is bliss so I'll just waltz for a few years.



Saturday, March 9, 2013

Human Anatomy Lesson




 He likes to be a tease by saying his heart is in his head.  I tuckered out and never made a brain, which he keeps reminding me to do.


And that's how it's put together.  Somewhat.  A+.  He's putting one of the kidneys on himself to show where they're at.  He says he wants to be a doctor and a pilot when he grows up.  Go for it, Sam!