Monday, March 31, 2014

Week Zero of Clinical Trial

Okay sorry I have been lagging....seems to be my speed these days!

Week zero there wasn't much to do. It started with our appointment on Thursday (February 20th) with the EKG and blood work. During this week we kept a 3 day food log of everything Luke ate or got via his tube. That way they can keep track of his calorie intake and have a written account of what little he ate. It also helps us compare later down the road. We had to do 3 video recordings of him at dinner time. The meals went in typical fashion where it took him over 15 minutes to take ONE bite of new food just to be able to get to his favorite foods. You would think that it is a no-brainer....take a pencil eraser size of new food (usually soft so it isn't too hard for him to chew) really fast so then you can eat your favorite foods but for him it is a struggle. You can just see the internal turmoil he deals with every time he is faced with something new to eat. The doctors took the videos so I don't have one to post but I will do my own sometime soon to show you how hard it is for him.

So not much change this week....3 videos, 3 day food journal, and waiting for lab results to come back (everything was good). Week 1 appointment was supposed to be March 3rd. We were to drive out on Sunday, have the appointment Monday morning, and then drive back Monday afternoon so I could work on Tuesday. The forecast in Kansas and in Northern Arkansas wasn't looking too good. Kansas was supposed to get 5-9 inches of ice/snow and even Little Rock was supposed to get bad weather. After emailing a couple times we decided to postpone the appointment a week so we didn't have to face the bad weather. It was a good thing we did because Kansas and most of Arkansas got LOTS of ICE! We would have been stuck in Kansas for several extra days. We had an option to go to New Orleans but we didn't realize it was Marti Gras until later in the week...good thing we decided just to push it back a week because I bet we would have had a hard time finding a place to stay.

 Thanks for being patient..R