Well yesterday (day 2) was a good day for Tanner. He was very well behaved and a love bug. I really think that food was affecting him in so many different ways including making him irritable and just mean sometimes. These past 3 days he has been a new child and I love it.
Today things got a little hard. He asked for food several times today and by 6pm we were in the car and he started yelling that he wanted food NOW. It broke my heart. I had to call home and tell everyone to eat and I would keep him out for a while. I just could not bring him home to see us eat dinner.When we got home I went in the room and ate while he hung out with daddy. We did meet up with fellow EE parents Susi and Rick and their daughter Alyssa. Alyssa talked with Tanner about her feeding tube and even showed it to him. Tanner has decided that he is going to drink his Elecare so that he does not have to get a feeding tube. He drank 32 ounces (960 calories)today and will probably get up for more in the night. Monday and Tues he drank no more that 21 ounces (630 calories) I am so grateful for the support that I get from all the other Eos parents. I am very grateful that Alyssa is so comfortable with talking with other kids about this disease. I think it really helped Tanner to hang out and talk with her tonight. He has not stopped talking and asking questions about her.
Tanner is such a tough kid! I love him and just wish he did not have to have EE. We need a cure!
That is so great to hear about the support from his new friend. Talking like that seems like it will help him cope and he is not the only one in the world with this cruel and mean disease. God be with him...
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