For the last few weeks, Sy has started a strange habit. We were all ready to start eating (and drinking) dinner one night as usual. Before we began, Sy made a request: "Poppy, can I smell your food?".
At first I thought it would just make it more difficult on the little guy and started to refuse it. Then, I talked to him and asked him if he thought that might make it harder for him to not eat. He said no and that he just wanted to see what it smelled like. With hesitation, I pushed my plate over to him as he took one large, long sniff of the evening's meal. He finished and then stated, "Mmmm, that makes me full!". Without complaining or getting upset, he went on to drink his elemental formula with a smile. What kind of kid with this kind of illness does this?
Since Sy has started, he occassionally asks to smell the day's food items and it seems that it's helping him (somehow) get through his crazy no food diet. Like it wasn't enough to show us self-control by undergoing a liquid diet without a single complaint, he now shows us that with the right attitude, you can still enjoy food without putting it in your mouth. I think it's harder for all of us who watch than it is for him!
Thank you, God for one special little boy!
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I just saw your article on ABC News. I wish you and your family the best. I saw your donation info and it will be forth coming in the mail this week....Good luck in your battle.
ReplyDeleteHi! I heard about your story through a mutual friend and fellow AU alum. I live in Cincinnati and would be more than happy to house you when you travel to town. My email is khladm@yahoo.com.
ReplyDeleteI saw you on Jacksonville channel 4 news on Saturday night. My son also has EE. He's actually fed via G tube, sometime GJ tube using Neocate. It took us 3 years to figure out what he had....went to Cincinnati Childrens for motility test.
ReplyDeleteWow guys! Thanks so much for the encouragement and support. We really appreciate it!
ReplyDeleteDavid: Words cannot express our gratitude. Thank you!
Karyn: Thanks so much for the offer. We'll let you know...
Anon: Hope your son is doing better. Let me know if I can help. Cinci is great!!
Hello,
ReplyDeleteMy 14 yr old son has EE, EG, and EC along with Crohn's, Osteoporosis, Kyphosis, Epilepsy etc... We have been dealing with this for over 11 yrs now. We just moved from Ohio over 1 1/2 years ago to Leesburg Florida. If you would like to talk my email is tr_sr@hotmail.com.