Ben had his appointment two days ago. They gave him the Vinchristine in his port and he started this month's steroids yesterday. Matt's parents came to visit Thursday afternoon on their way to Missouri and the kids absolutely loved it. Ben had so much fun with his "B" and "Re". He was very sad when they left and he cried hard. It made me sad that he was so heart broken but also filled me with Joy that he has such a good relationship with both sets of Grandparents. He loves them so much and calls them all his friends. I love it so much!!
Pray for me as I am now struggling with Ben over his appetite and diet. It is getting increasingly difficult to get him to eat right. It started with pickiness, like only wanting to eat certain foods some good foods some not. He craved the bad foods when he was on steroids. Now even with the steroids it is hard to get him to eat at all. Not only is it completely frustrating I find my heart breaking every day with our battle to get him to eat. I feel so mean at times being so firm and hard during meal times especially when we have to punish him to get him to eat. I broke down last night and if it weren't for my mom being able to get him to eat I think it would have been so hard. I feel cruel at times forcing him to eat, but our other option is admitting him to the hospital. We have begun to supplement him with Pediasur ( which he doesn't like) because he is not eating good. If he loses too much weight than he will have to go to the hospital and they will put a tube through his nose down to his stomach to give him pediasure until his weight comes up and he eats well on his own. I have been told that they can be in there more than a month over this. I am also being told that this is only the beginning and can get much more difficult.
Anyway Thank you so much for your prayers and please keep it up. I am soooo sad lately but I know that we will get through this with the Lord and all our supporters.
Love Jamie
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Jamie, it breaks my heart to read about the struggle that your little boy is going through. I don`t believe there is anything harder on earth than watching your child suffer. Please know I pray regularly for you, your little boy, and your family.
ReplyDeleteJamie, You and your family are in my prayers. We had to supplement with Pediasure as well when Katie was one year old. We found that she liked the chocolate after we added a little Nestle quick. Don't know if that would work for you. I'm not exactly sure if your biggest concern is weight gain or nutrition but with Katie it was simply weight. so, in the foods that she would eat (mashed potatoes especially), I added heavy cream - with the doctors blessing. I am praying that this resolves quickly and at home for you.
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