Wednesday, September 19, 2012

baker beach and the golden gate bridge

Lars's first ride on an airplane.  I think he likes it.

Baker Beach.  Don't get too close to the bridge.  It's not very "family friendly" if you know what I mean.



 We crossed the bridge this time.  Sam had been waiting for this moment all week long.

Sunday, September 16, 2012

Back to Stanford for RP103

blood pressure, weight check, height check, temperature, blood draw = no big deal.  urine sample = armageddon.  Sam refuses to pee in a cup so he has to wear a bag in his diaper to catch the urine.  He absolutely hates when we have to do this test.

The nurses at Stanford are great with Sam.

We're thrilled he's still on the growth charts for height.  He grew almost an inch in the last 3 months.  We're lucky we won't have to start growth hormone shots anytime soon.  Yippee.  Good growing, Sam!!

While we waited for Sam to fill his pee bag he watched The Lion King on the i-Pod. 

Lars was amazing the whole day.  I carried him in the baby bjorn almost all morning with no fuss.  He will not be able to take RP103 like Sam until it is FDA approved.  We're praying it's approved in January.

Saturday, September 15, 2012

Cecret Lake

We've made a habit of hiking to Cecret Lake every fall.  Last year there were salamanders but this year we weren't so lucky.  However,  the weather was perfect and the lake was beautiful.  Sam hiked 2.5 miles all by HIMSELF.  Sometimes I worry that cystinosis holds him back but I think he may have been the ONLY three year old that made the entire hike on his own that day. 

Sam and Tallinn rock climbing.
This is one of the days when Sam asked to be Moses for Halloween.  "Let my people go!"

Sam is a fearless rock climber.  I'll encourage that.  Cousin Nicholas joined us on the hike.

Sam thinks grandpa is so much fun.


1,2,3 boys

Sunday, September 9, 2012


This is Lars during his first week on earth.

leetle teeny legs

This is Lars during his fourth week.  He will be six weeks tomorrow and is even fatter.  I don't have a current weight on him but it's over eleven pounds now.   His nephrologist and dietician have said to feed him on command... even if it's every thirty minutes.  Ahhhhh.  His kidney function looks fine but he could possibly be thirsty and we don't want him to get dehydrated.  His cystagon has made him really sleepy so he's only waking up about three times during the night now and he'll go back to sleep pretty easily.  I was really worried he'd get sick from the medication but he's handling everything fine so far.  I'm glad he's able to sleep through his discomfort. 

Sunday, September 2, 2012

Let's Go Fly A Kite

The "Up" house

Sam's lunch.  He only touched the Fiji bottles.

Lars the turban man.
One-shoe Sam.

I love Sam faces.