elmo and sam

we made this movie after watching "being elmo."  turns out it's hard to make movies with two-year-olds, but he did pretty well.

Keepin' The Blog Alive

 

We're so sad that we could not make it to the CRF conference in Newport, CA this year.  Sam has grown so much since we were there last year.  One of Sam's nephrologist's was kind to let us know that the CRF announced the okay for the first bone marrow transplant trial.  This has come sooner than I thought.  Yay!!!  Also,  I hear the CRF raised $1.75 million last night.  All funds go towards medical research.  Thank you CRF!

On a sadder note...  Annie or "baby dog" is missing.  Any information that can lead to her whereabouts will be greatly appreciated.  This too is HUGE for Sam.  Thank you.

Our desktop is dead and our laptop has no more space

 

So these photos are from weeks ago.  As soon as we can get photos off my camera we will show you our/Sam's new toys. 

Samuel discovered the storage space where all his g-tube extensions are kept and decided to link a bunch together.  He's pretty good at figuring out how to connect and disconnect his tubes now.

Sam refuses to give up his crib for a big boy bed.  

Henry and Sam had fun pulling ALL the leaves off this tree.

This is a picture of me.  I helped give myself the arms but Sam made sure I was wearing one shoe.

Sam is moving on to chapter books.  We finished The Tale of Despereaux in four nights.

Valentino

All of these Valentines were for Sam

 

Let's Play EKG!!!

We've made two successful trips to Stanford so far and we have three more to go.  Sam actually enjoys these hospital visits because he gets to see his other friends with cystinosis.  Every time we go he has an EKG at the children's hospital, which makes him a little nervous.  Luckily, Sam's friend, Hank Sturgis, is a great pal and helps Sam be brave.  We've been practicing at home too. 

Baby dog, a.k.a. Annie, gets to do everything Sam does.

Sam gives kind words of encouragement and kisses to Annie

Sam's last two EKGs have come back abnormal so a cardiologist at Stanford recommended he have an echocardiogram this month.  He'll be sedated so we don't have to prep him for this procedure but we will for his IV.

Library Repeats

We've taken advantage of the fact that we have such an amazing library near our home.  Sam LOVES the library.  He still associates it with bee stings but is still excited to visit anyway.  He's so loud when we go though so we're still working on quiet voices.  If he sees the books pictured above he goes monkey wild and can't put them down.  We've checked them each out many times and there will be many more times to come.

Sam's speech therapist says books are great for speech developement.  We read a minimun of three hours a day and we are FINALLY seeing results.  Sam is talking like crazy... only Stephen and I can understand him at this point though.  He knows exactly what he wants to say but almost everything seems to start with the letter "D"... 

dank you

dase ball dat

dasdet ball

dow

danket

det's doe

THEBEACHTheBeachthebeach

AHHHHH!!!  Wah-wah!!!!!!

We found a beach in San Francisco!!!  A clothed one too.   I love January in California.

Sam wanted to find rocks the entire time. 

The Half Finished Christmas Card!

And Happy New Year!

I Loves Me Some Medicines

Not long ago we were trying so hard to get this kid to move, pull himself up on furniture, get into trouble, do something besides sit.  An assortment of medications (totaling 24 different doses a day) has given Sam a whole new life.  He is a mechanical monkey that never stops dancing.  I love Sam and I love love love love drugs.  Love 'em.  

 

 

 Sam keeps asking me for a "baby Jane"

FIRST DAY AT STANFORD

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