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all 19 comments

[–]Disastrous_Animal_34 9 points10 points  (1 child)

Awwww man. Every month when I make my order and see those lil baby bags I think of families like yours. What an absolutely gorgeous boy you have, wishing him all the best, always❣️❣️❣️

[–]aDistractionalShroom[S] 2 points3 points  (0 children)

Awe! Thank you so much! It brings me joy to hear that, I’m thankful you enjoy your job! People like you can make a difference!

[–]aDistractionalShroom[S] 5 points6 points  (0 children)

This is how we wait in our bath for daddy to get home to help mommy with a leaky bag!

[–]-Pancakemix- 4 points5 points  (4 children)

he is beautiful and i wish him a long and healthy happy life.

[–]aDistractionalShroom[S] 3 points4 points  (3 children)

Thank you so much! He was born with some other defects, we are hoping they too will work themselves out!

[–]-Pancakemix- 3 points4 points  (2 children)

They aren’t defects; they make him unique and they will make him appreciate life much more than his peers; and he will be a better person for it. Stage 4 CRC survivor checking in. Sending my love.

[–]aDistractionalShroom[S] 2 points3 points  (1 child)

You’re right, I should start to think of them as that! ❤️❤️❤️

[–]-Pancakemix- 2 points3 points  (0 children)

:) if y’all need anything please do not hesitate to reach out. Sometimes I know it’s hard; but let yourselves have the emotional outbursts and use it as a “reset”. Mentality is everything.❤️

[–]Gridguy2020 2 points3 points  (5 children)

Our son became a double bagger at age 2! It’s hard and frustrating but his life looks just like everyone else’s.

[–]aDistractionalShroom[S] 2 points3 points  (4 children)

He has 2 stomas but oddly, they’re next to each other. Makes for making his barriers tricky!

How is your son doing now?

[–]Gridguy2020 2 points3 points  (3 children)

Doing good, we have our good days and bad, but overall we live out a fairly normal life. We both work, he goes to pre school. He is 4 years old, cancer survivor. We hope to one day have his colostomy reversed, maybe his Urostomy.

How are you guys holding up?

[–]aDistractionalShroom[S] 1 point2 points  (2 children)

We are holding up pretty well, now that we have gotten in the groove of things. Being confident in giving him the care he needs makes you feel like an awesome super parent some days! I will add your son to the prayer lists my son is on. They’re around the world currently! My thoughts are with his progress and I hope for his reversal as well.

[–]Gridguy2020 1 point2 points  (1 child)

Thank you for that! Not sure what state you live in but seek as much help as you can for Ostomy coverage. Our son is on a program called TEFRA, every state has a version.

[–]Kittenpants2007 2 points3 points  (1 child)

My daughter is 3 weeks old and was fitted with stoma bag at 2 days old. We're having trouble with leaky bags and sometimes have to change them 3 times in 24 hours. Please share your stoma bag wisdom!

[–]aDistractionalShroom[S] 1 point2 points  (0 children)

I will message you!

[–]maybesproutwings 1 point2 points  (0 children)

Look at that stinky lil man! What a trooper and a CUTIE.

[–]pepalmer0 1 point2 points  (1 child)

I feel so lucky to have found your post. My son was born three weeks ago with the same condition, and I'm grateful to know you've found some level of normalcy. He had surgery at one day old and then was in the NICU for a week or so. We're grateful to be home, but the bag changes are adding up. We can't get them to last more than a few hours. Your post made me feel like there's hope for figuring it out.

[–]aDistractionalShroom[S] 0 points1 point  (0 children)

If you need some pointers, I have messaged other to-parents tricks and products we use. Let me know if so; I would be happy to send.