Thursday, January 31, 2013

A Funny Sam Story. And. More. Lars.


 Before leaving the house I told pant-less Sam that he needed to put on some jeans.   He was a little confused about the clothing organization in his dresser because he kept calling to me in the living room, "This drawer, mom?  Are my pants in this drawer?  What pants?"  I told him to just bring some out to the living room and I'd help him.  He entered the living room carrying the entire drawer that he had pulled from the dresser (that's a big block of wood).  By the time he carried the drawer from his bedroom, through the kitchen, and into the living room, all the pants had fallen out.  Funny kid.  

And now some more photos of our SIX month old.






Photo overload?  Our computer thinks so.


Sunday, January 27, 2013

good things are happening: a long post

 Sam has started potty training himself.  He reminds me to set the timer for 30 minutes.  When the timer goes off, he tells me he's running to the potty.  He does it all by himself.  The drawback is that he won't wear clothes.  Only underwear.  My good friend, Allie, gave him an undershirt that he likes to wear every single day.  An undershirt is better than no shirt at all so I'm going to track down some more goatmilk undies.  Thank you, Alpha.

Sam has been eating food since early December.  Tasting. Chewing. Swallowing.  Eating.  I'd guess he's getting around 200 calories via mouth each day.   Just thinking about it makes me cry (happy tears of course).  He has been very brave.  He'll try something new almost every day with his usual side of cheese, cheese crackers, and pine nuts.  There are 222 calories in 3 tablespoons of pine nuts. Those are some expensive calories.   He has chosen some good foods to like as far as calories go.  I hope he'll like milk one day.  

On the opposite side of the spectrum.... Lars is eating six jars of baby food in a day, plus he's still nursing.  There is not a food he won't eat.  I think cystagon prepared him for that ;)

Lars has been sitting up since early December.  Life is much easier now that he can entertain himself on the floor for awhile.  Despite all our efforts, he refuses to roll over.  Not even my cell phone will entice him to move two inches.  He's a cute little/big sloth.  If he gains one more pound he's legally too large for his car seat.  He's probably already too long for it.  I suppose we'll be buying a new one very soon. 

Sam fell and skinned his knee the other day.  After I put a band-aid on him he stopped crying but sadly told me that he wished Macey would kiss it better.  From five feet away Macey stood up, walked over to Sam, and started licking his knee.  Our dog speaks English. 





  




Tuesday, January 22, 2013

It's been one of thoooooose days...

Today was one of those days where...

You wake up extra early so you can leave the house on time for Lars's scheduled lab appt. at Primary Children's Hospital.  After scraping ice off your car you drive to the lab and they don't have your order.

You clog Sam's g-tube at the hospital during medicine time and you don't have a back up extension tube.  The g-tube clinic is closed until 1pm.

You run to the hospital next door to get paper work from the pediatric nephrologist.  You run back to Primary Children's.  You reschedule Lars's lab appt. because now it's too late to do the test.

You drive home FAST to unclog Sam's tube and make sure he gets all his medicine.

You walk in the front door to be greeted by a dog with a shredded diaper in her mouth.  She has smeared excrement all over the front entry.

After cleaning up, you quickly leave the house again to drive to the dentist's office.

You are so so so so grateful for Dr. Rupp and his aMaZinG dental hygienist, Loralee, because Sam looks forward to these appts. for days before hand.   They treat him like a king and spoil him with smiles, compliments, toys, and love.  He really does love the dentist.

You're feeling really good now.  The drive home is great.

You walk in the front door and the dog has excrement-ed on your rug.  About six times.  (She has never done this before)

sigh.

Today I let Sam watch SIX episodes of Curious George.  George is a very good baby-sitter.  

It has certainly been one of thoooooooooose days.

These pictures are not from one of thooooooooose days. 


Saturday, January 5, 2013

Thank you California

Who can guess what show Sam is watching?

 Our last trip to Stanford was by far the most stressful yet.  I'll spare everyone the details.  I'm sick of talking about it.  The one part that did go well though was supposed to have been the hardest... so that's good news. We arrived at Lucile Packard Medical Center at 7am for Sam to get a hep-lock IV and have his first blood draw.  We were at the hospital from 7am to 8pm so Sam could give a blood sample almost every hour.  Sam didn't even complain.  After he had his EKG he sat up and said, "I like EKG's!  EKG's are my favorite!"

Sam is fascinated with the color of his blood.  I tried to distract him from looking at it because that stuff makes me woozy but apparently he likes it. 




Sam was showing me how they take his blood.  He kept saying, "I can't even feel it!" during the process.  He was pretty happy he didn't have to be poked more than once.

Classic Lars face.


Stanford has the coolest headphones.

I looked at that clock about a million gazillion times.

The nurses at Lucile Packard Dialysis center/short stay unit were absolutely amazing.  They were kind and patient with Sam.  They took time to talk with him and ask him questions.  He was given a few different toys when he left, which made him happy.  We're very grateful to be a part of this study and Sam really looks forward to flying on airplanes but we'll be so happy when we no longer have to travel.