Life without Food

Bless him! Even though he does not really need the clothes because he is not currently growing, maybe a shopping trip can be planned for when he's feeling better, just to get him one or two special new outfits, something different that might cheer him up a little bit. Once he becomes accustomed to the feeding tube and progresses to the point he can handle it, maybe you can teach him to take small bites of food in his mouth to savor the flavors and then spit them out, kind of like wine tasting. That way, he does not have to completely miss out on the experience of eating.
 
thanks stellasamifan...but we have to understand Bradley will never eat again. He'll be on a feeding tube the rest of his life- if he is ever allowed to eat by mouth again, it will be plain white rice. He'll never eat green beans again. He will never have dessert. That is ok. We don't want him in pain anymore.

Bradley told his mom this weekend how happy he would be if he could go home to Heaven to live with Jesus. He wouldn't be in pain anymore, and everyone is full - no more hunger.

The reality is - we pray for Bradley's pain to lessen and for him to grow. And we must be accepting of his new "life without food" - this is the way it will be for the rest of his life. There is no cure for EoE. Part of healing- is accepting it. I appreciate your prayer so much, it's very sweet...but please pray more for acceptance. Bradley needs that most of all.
And, he even though he won't get to eat food the way we do, he'll get lots of attention and play time on his favorite video games from all of us. His life will be as amazing as we can make it for him, for as long as we have him.
God is GREAT! And God's going to do some amazing things through our tiny little nephew, I just know it!
 
DaysLady - Thank you for updating Bradley's status. Sometimes the weather forecasters are wrong, so let's hope they are this time and that the snow event will not prevent Bradley from keeping his medical appointment.

The video was both heartbreaking and enlightening. I had no idea that so many children required feeding tubes, was only aware of these conditions occurring in seniors. Now I know about Feeding Tube Awareness Week and will definitely be reflecting on this.

We are human, after all, and take so much for granted, like the simple act of eating whatever we want, whenever we want. This is not the case for so much of the population, and it most certainly is more difficult for children to experience this condition; however, as proven by the video, these wonderful young people are not letting it stop them from achieving whatever they want to achieve, and I am so proud of them all and humbled by their courage.

Prayers are up for Bradley and family as they weather all of their storms. :hug:
 
Surgery is scheduled for March 4th! I will keep everyone posted how that goes.

Also- some good news! The nutritionist did some more testing on Bradley while he was stuck in Charleston because of the bad weather... and there *might* be a few foods Bradley will be allowed to eat while also on the feeding tube. (It will be literally, between 1 and 5 total foods--but it's food! And Bradley is anxious to know what he'll be allowed to eat.)
Most likely it will be plain white rice, and other things like that. but it will help give him that "full" feeling. I'm so anxious for him too- I just want to see him grow big and tall and to say "I'm full!" :) It's only 2 weeks away...but I can't wait. We've waited so long!
 
Thank you all! We are getting closer and closer...just 1.5 weeks away! And we've gone from "heartbroken that we can't feed him and the doctors have to"...to "anxious to get the tube in so he can be fed"!!! We saw some before and after pictures of another child that is just like Bradley and I was moved to tears at the difference.... Bradley is going to be fed!!! He'll be full for the first time in his life! And he won't be so dangerously thin anymore!! His eyes won't look so tired from the hunger and his smile will be a REAL smile, not one that has pain behind it. March 4th can't get here fast enough for this Aunt. My nephew's life will be changed forever...and we are counting down the days! It will be hard at first- but in just a few months, Bradley will be the real Bradley, the not hungry Bradley, the not sick Bradley, whom I can't wait to meet.

I read something online that describes our Bradley "Boo" perfectly:

"I thought I would be teaching my child about the world; Instead, I'm teaching the world about my child."

We love you B-rad. Hang in there buddy--- a LOT of people are praying for you and love you.
Dude, is it March 4th yet?!
 
katmouse, no he doesn't - his mom has a Facebook and just updates there...she also has been trying to keep up with her blog: www.brandislifesong.blogspot.com
I will ask her if she could make a Facebook page for Bradley- she may not want to though. :)
I'll keep you posted the best I can here, too!
 
I understand. I thought people could give the him encouragement.
mom can set it up private and check people before she signs them up.

You'll tell Bradley there a lot of people thinking about him and we
all hope his surgery goes well.
 
Bradley was taken to the OR around 8:10am EST this morning and underwent a very successful surgery to get his feeding tube. He is in recover now- and my husband (his Uncle Eric) is with him. :) Prayers for the days ahead are needed. Specifically: Pray his body responds well to the g-tube and the new formulas they will be feeding him. Pray for his self-esteem, his well being. Bradley is 8 years old- and knows that food tastes good. He is heartbroken over this and we all need prayers of comfort and healing for Bradley and all of us as well as we learn how to care for him. Pray for his mommy, my sister in law Brandi as she learns all over again how to both feed her first born, and still care for the other 2 children in the home. check out her blog posts www.brandislifesong.blogspot.com
God's Got This!!!!!!!
 
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