Wow, 17 days now and counting with an ANC of 0! He also needs platelets today, so in an hour well be going to the medicine room to get them. Yesterday he was tested for c-diff since his diarrhea has been so bad, but thankfully he is negative! I dont know that Ive really posted about this much but its been months since Waylon has really eaten anything substantial. A week ago or so when he was first given marinol he ate 3 1/2 chicken nuggets and then 2 days later he ate 4 nuggets, but nothing at all since then. I have been at my breaking point with trying to get him to eat. Ive gone through every emotion when begging him to eat from being nice and understanding to being angry and mad. Ive yelled and cried and begged and pleaded with all efforts resulting in the same outcome from Waylon of being closed down and non-responsive or willing to talk about things. A few days ago I took away his iPad and told him he would not be able to have any fun until he eats--Ive asked him just to start off small with a cracker or a slice of bread because I know he hates throwing up and over time hell be able to eat larger portions. So, last night I had a heart to heart with him being as sweet as I could while talking to him about eating. I told him I knew he was afraid of throwing up and that Ive been afaid of things too but sometimes we have to conquer those fears. I used Morgan as a perfect example because shes been terrified of elevators for a year and a half now to the point of us having to go out of our way to take the stairs. When we dont, she cries in such fear and shakes uncontrollably. The last few days we have really worked on it and she is getting much better, so I explained to Waylon how brave Morgan has been to start taking elevators without having a major meltdown. The other story I told him was that there are juices in his stomach that dont get along and fight and when they fight, thats when he throws up. I told him that each time they battle, thats when he gets sick BUT if he ate a piece of bread or any kind of food, they would eat it up instead of fighting. I told him eventually his stomach will get back to normal and hell be able to eat like he used to and that as long as he keeps putting food in it, the bad stomach juices wont fight each other anymore. While having these converations with him, he just put his hands over his face and cried with his bottom lip out as far as it could possibly be. Well, while Morgan and I were eating lunch today, I asked him like I do all the time, if he would like bread or crackers and he adamantly said no like he has so many other times. I had just about given up and wasnt even thinking about it anymore, when out of the blue he tells me he would like a burrito for lunch. I was in shock! I went down to the kitchen and heated it up. When I gave it to him, he said Mom, Im trying to eat to make the bad guys go away. It brought tears to my eyes to know that he actually does listen to me!!!! And that statement was followed by him asking if he can play on his iPad after he eats :-). Of course, I let him! I know it was a big step for him to eat and to give up his control. My back up plan if he regresses again with eating will be to get a police officer to come see him (with him not knowing that I had anything to do with it) and talk to him about being a poiceman when he grows up. I figured he can talk to Waylon about how important it is to eat well and be healthy so that hes strong enough to taken on bad guys. This was something I also thought about last night, but havent even had the time to find an officer here to help out. But I think this will definitely be something that might work, so its on the back burner for now.
Posted on: Fri, 25 Jul 2014 20:16:16 +0000
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