Life without Food

I'm glad he's able to eat something even though not very often.
Thanks for letting us know.
 
DaysLady, it's wonderful to hear that Bradley is recovering. I'm glad he is able to eat a little; that may help him maintain some esophageal function. I hope and pray that new medical techniques will soon be developed that will be very helpful.
 
so... a not so good update. 2 leaps forward, 5 steps back right?
Bradley stopped gaining weight. actually...as of this weeks appointment, he is losing weight..he lost 3 lbs!! :( so they are considering getting him a bigger feeding tube put in, one that will be hooked to a machine at night with a steady drip. not sure what all this means...but prayers and thoughts are appreciated. we are at a heartbreaking loss as what to do...our precious boy is starving to death because his body will not accept food. :( :( :(
 
Praying for Bradley! Maybe it is just a matter of needing a bigger tube. He was feeling so much better and doing more, so maybe he burned through the calories he was getting too fast. Praying they find an answer quickly.
 
katt-- the doctor actually mentioned that as a possibility. he is feeling better and playing more-- and he has high metabolism...so there is a high chance the little stinker is simply burning off all the calories. gonna by the boy some more video games and tell him to sit down and gain some weight! :)
 
I hope it is that the "problem" is Bradley is feeling better and is acting like a little boy and just needs to have more protein/food.....
Positive Vibes being sent for the family.....
 
Bradley update:

Good news: the feeding tube WORKED! For the first time in his entire life, he had normal counts. This was a month ago. He's been on only formula feedings and drinking water, and maybe 1 other thing? but I don't remember what my sister in law said he was allowed to have. I think it was plain cooked beans- no flavor- so he didn't eat a lot of it. just formula through his tube. He even started to grow again! (to put this in perspective: He'll be 9 this year and finally growing out of size 5/6. )

Well, with normal counts, they started trying to introduce a few foods. This brought so much joy to Bradley, just to be able to CHEW something in his MOUTH brought a big smile to his face. My heart is breaking because I'm about to tell you the bad news.

Bradley reacted badly to new foods, he's back to only formula. His skin is raw, so they wrap him up from head to toe at night, and his mom holds him tight so he won't scratch, and he cries himself to sleep. Once he heals, and its back under control, they want to try a different food.

Read the latest blog:
http://www.brandislifesong.blogspot.com/2014/10/how-do-you-do-it.html I'm amazed at my sister in law's strength.

She is also leading a Bible study at her church, encouraging others to "share their story". as she shares hers. Together, we can all get through our struggles. Here is my story: http://www.fromthepicklejar.blogspot.com/2014/09/my-journey-with-god.html

Prayers please, for Bradley's pain to subside. Prayers for all children and adults that suffer from Eosinophillic Diseases. And prayers for their caregivers, who hold them tight in their arms with love and strength no matter what.

We are currently spreading the word to neighbors to help us do something special for Bradley, and other kids like him.

I will have a pumpkin on my porch painted teal. Teal is the color for food related diseases.
When families see my pumpkin, they'll know that I don't just have a candy bowl, but I have a special non-edible prizes bowl for kids with food diseases that cannot have candy. (I'm just getting some plastic bugs, cheap slinkies and crayons from the dollar store)

:) I'm excited about this project! Trick or treating is something Bradley always wanted to do, but can't have the candy so he only goes to his Nana's house because she always has a prize for him that's non-edible. (we live and a half away, otherwise, he'd be able to come to my house as well). now, we hope to be able to take him trick or treating to houses with teal pumpkins. :) and I'll be doing the same for kids like him here in my town. I may not see many kids- but even if I only have 1 child come to my door because of my teal pumpkin, their smile and joy will be worth it.
 
I love the teal pumpkin idea! And I never thought about children with food issues and Halloween....I just bought a whole bunch of treasure for a chili cook off we're doing this weekend. We have a pirate theme with a treasure chest to give out treats. I am going to put some back for Halloween and be prepared for the kiddos who can't have candy :)
 
Days Lady, Well sweetheart, Rest assured God will bless those who need the blessings, and He knows that even though there are many, many more that bring the smiles, the strength, the ability to endure the every day efforts, that it takes to make it through the every day struggles. He knows the little things that you and many others have done to assist that little darling to make it through his young and protected life.

What an angel he is. My prayers are with yours, and all the others, may his discomforts become less, and his joys over flow the capacity to contain them... Hang in there Days Lady. I know His blessings will rain upon you.

Oh Lord Please.jpg
 
Wow, some serious heavy reading. Like mandamiee, I just found this thread. I hope all is going well. I have some erasers and straws that I never thought about having as a gift for kids who can't have candy. I will take them with me to hand out this year. We sit at the bottom of our steep driveway so kids with mobility issues don't have to walk and always let the kids pick their own candy, in case of allergies or food issues. My nephew has Aspbergers and is very picky about what he will eat.

Dayslady: I hope things are going better for Brad! I was born with an unformed esphogaus and had surgery at 2 days old...44 years ago; I'm also a survivor of tetrology of fallot and one of the generation that will determine how long people can live with the repairs. I hope for your sake, Brad's sake, and all of your family's sake that Brad bypasses all expectations!! <3
 
I must be living under a rock. THANK YOU for the Teal Pumpkin information. I will get one and get the appropriate non food related hand outs.

I am so happy to hear that Bradley has started growing and not that he had an allergic reaction.

My thoughts continue for the family and all his supporters.
 
robinsnest, you're not living under a rock - I didn't know about the Teal Pumpkin Project either.

I do plan on spreading the word about it. I'm going spread the word about it. I'm going to email my daughter's troop leader and see if I can mention it at our meeting on Thursday. I think she will be receptive to the idea. One of the girls in the troop was diagnosed with Celiac Disease a couple of years ago. Celiac disease is a gluten intolerance. Gluten "a substance present in cereal grains, especially wheat, that is responsible for the elastic texture of dough."

Edited to add: Here is the link to The Teal Pumpkin Project http://www.foodallergy.org/teal-pumpkin-project
 
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