January 21, 2013

Outside Temp: 41 F (started out at 15 and heated up to 55 today... awesome)

What I cooked today:
Nothing... Grandma did all the cooking, which is good since I was working today!

Update:

Happy 9th Birthday to my youngest, Ryan!

It may be hard for most people to realize how amazing it is that Ryan is even here, for this birthday.  When he was about 19 months (just shy of 2 years old), he was dying from liver failure.  He had been in the hospital almost continuously from birth, and had multiple (about 15) surgeries to try to repair his intestines.  They had all failed, due to an unknown blood clotting disorder, that we didn't know about until he was about 2 1/2.  We had been on the transplant list since June 2005, and in November 2005, we got the call. 

While his transplant of his liver and small intestine was a success, we had multiple set backs and infections, the most significant was a clot in the intestine that caused about 50% of the transplanted intestine to die.  We have never been able to determine if the remaining intestine worked enough for him to live on. 

Since he was born, Ryan has been on TPN, which is an IV solution that is given to him every night through a permanent IV catheter in his chest.  Which means that every night, he is hooked up to a pump, which gives him all the nutrients and vitamins that he needs to survive.  Of course, he is also on some immuno-suppression drugs, but those are insignificant compared to his TPN.  We are constantly aware that if he does not get his TPN tonight, and every night, really bad things could happen.  There are some signs that his intestines are starting to work, but it will be years (if ever) that he could eat enough and digest enough to live without his nightly TPN.

However, in a lot of ways, Ryan is just like any other kid.  He gets ready for school with his backpack, and his snow pants, and his boots, just like any other kid.  He loves playing Lego X Box games (he's currently addicted to Lego Batman and Lego Lord of the Rings...).  He goes skiing with us, although he doesn't want to listen, he just wants to go fast.  And when I tell him that it's bedtime, he begs me to let him have 'five more minutes, please!'. 

Of course, for Ryan, getting sick means a trip to the hospital.  And bedtime means getting a shot in the leg, and getting hooked up to his TPN.  And, we spoil him rotten, letting him get away with things that I would NEVER let his siblings get away with.  But I wouldn't have it any other way, because he is here.  And that is enough to make up for any little inconveniences along the way.