Day 5

I felt like we took a step backward today, but Heidi says that that is completely normal for this stage of treatment.  So I am trying to be positive.  Sam and James really didn’t eat or drink very much at all today.  Mostly we just played with food, hoping that they would taste something.  They really wanted to play with the butter knives for some reason, so we had to teach them that those are only for cutting and spreading, not for eating with…. We spread pudding and yogurt on graham crackers and then topped them with goldfish crackers, fruit loops, M&M’s, etc.  Very appetizing, I know.  James would spread a little, then lick the knife, then spread more, and lick more.  So at least he was eating a little something, right?  They also made sandwiches for me and Heidi by putting ham, cheese, and pickles on bread, then spreading the mayo and mustard on.  They were quite proud of themselves for that.

Today was more about giving them a little break from being super hungry and getting them to trust food a little more.  We went to the park to get them out of the house for a little bit, and they had fun despite not having quite as much energy as normal.  Then we got pizza for dinner, which they are always excited about even though they don’t eat any.  During dinner they just wanted to do some more spreading on graham crackers with their new favorite utensils, the butter knives.  

So even though it doesn’t seem like a whole lot of progress was made today, I have to step back and look at the big picture and see where they were a few days ago compared to where they are now.  They really have taken some big steps.  First of all, they will drink a couple ounces in a day and that is huge for them!  They ask for snacks and drinks several times throughout the day.  They love playing with food and don’t mind when it is on their hands most of the time (they used to gag or even throw up when something would get on their hands or even if they smelled something).  They are obsessed with the fridge and are always wanting to open it to see what is inside.  They are just pretty much obsessed with food right now.  

Those might seem like small things, but it is more progress than has been made in a really long time so I can’t complain too much.   At this point it seems like James will pick it up a little faster than Sam because he is more willing to try things, and Sam is just a little more stubborn and cautious.  But that is just how their personalities are.  They are both very strong boys, and I know that they will get through this.