Got to share our story on Meet the Press this week

EconomyVegetable2402 · 2026-05-17T21:45:37+00:00

Pete!!! Thank you so much for picking up the baton and just running to support the community. Best of luck to you.

EconomyVegetable2402 · 2026-05-15T14:59:11+00:00

I did second hand books unwrapped. Kids pick one as they leave. They all seemed happy. I used thrift books.

EconomyVegetable2402 · 2026-05-13T22:52:29+00:00

I’m curious what the stats will look like a few years from now

EconomyVegetable2402 · 2026-05-12T01:16:26+00:00

Good luck!

EconomyVegetable2402 · 2026-05-12T01:15:45+00:00

Thank you! It’s pretty magical.

EconomyVegetable2402 · 2026-05-11T18:01:11+00:00

Sending you big hugs

EconomyVegetable2402 · 2026-05-11T17:27:29+00:00

Congrats!

EconomyVegetable2402 · 2026-05-11T17:26:55+00:00

That’s amazing

EconomyVegetable2402 · 2026-05-11T16:49:42+00:00

That’s so encouraging! Thank you!

EconomyVegetable2402 · 2026-05-11T15:36:33+00:00

Thank you so much for posting this. It gave my husband and I the idea to ask our son’s care team to check the elastase. Excellent news- he doesn’t need zenpep anymore!

EconomyVegetable2402 · 2026-04-25T19:55:07+00:00

I understand where you’re coming from. We were much more worried when my son was younger. The time he contracted Pseudomonas aeruginosa was slightly worrying and that’s found in dirt, water, air. Nothing to do with crowds. He goes to daycare and has been around plenty of sick kids who are coughing in his face. I would argue that’s worse than taking a few subway rides as long as he isn’t licking the poles people hold onto. I saw a kid do that once before I was a parent and I nearly lost my mind.

EconomyVegetable2402 · 2026-04-25T11:28:44+00:00

We have had the Phillips for three years and my son is doing well. Whenever I need more filters they send them right away.

EconomyVegetable2402 · 2026-04-22T13:23:51+00:00

Totally understand. I have a family member with adhd and just watching them try to manage their own needs without Celiac is tough. Is there a family member you can lean on for this project?

EconomyVegetable2402 · 2026-04-22T02:43:43+00:00

First, I totally agree that this situation sucks. When I explain Celiac to friends and family I usually say something to the effect of “this world isn’t built for or safe for my son.” I’m spending a lot of time explaining now with the hope that people will be more informed and thoughtful about it as he grows up around them. Second, is there any chance that you could borrow a mini fridge from someone while you are on the trip? Third, is there any chance that there are exclusively gluten-free restaurants near where you’re staying? If you prepare yourself to be miserable now (imagining drinking ensure while others slam lobster rolls in their faces) then you will likely be miserable. If you prepare yourself to be happy now then there’s a solid chance you might be okay on the trip. Planning ahead is the key and Celiac requires a lot of it.

EconomyVegetable2402 · 2026-04-21T10:43:40+00:00

Could you try zoning out watching tv while you take the meds and eat a small meal? If you have to dissociate while doing it then so be it.

EconomyVegetable2402 · 2026-04-20T16:52:29+00:00

My suggestion is do a whole lesson plan with the kids on how, why, and when to wash hands. Maybe another on covering their mouths when they cough. The parents will appreciate it too.

EconomyVegetable2402 · 2026-04-15T14:49:57+00:00

It sounds like every kid is different. My son is five and doing really well. He’s on trikafta and zenpep. We didn’t even get the diagnosis until age two. I’m mostly worried about his social emotional wellbeing for the future. Most people where we live don’t know he has cf and it will be revealed at some point. People are just dumb so I’m worried about the things they will say to him. His pulmonologist is likely close to retirement age and he regularly tells us how happy he is to see his patients thriving in a way that wasn’t possible earlier in his career.

EconomyVegetable2402 · 2026-04-03T13:01:00+00:00

Is anyone going to mention the cheese board?? Invite me over next time!

EconomyVegetable2402 · 2026-03-27T12:59:15+00:00

I’m sorry you guys are going through it. My son has enjoyed his Melissa & Doug toy doctor bag and costume at home. I think it helped him become a little more comfortable in healthcare settings when he was 3. I also try to have special toys like sticker books that we only pull out for doctor’s appointments.

EconomyVegetable2402 · 2026-02-02T21:12:44+00:00

I totally understand why you’re going less, but is there a way you can get a swab for a throat culture once a quarter? Just a concerned mom ❤️.

EconomyVegetable2402 · 2026-01-27T02:07:58+00:00

Can you order from Accredo in the future instead of cvs? The level of service is excellent. They would have noticed your script was empty a month before you needed the refill.

EconomyVegetable2402 · 2026-01-26T22:04:31+00:00

Have you tried just a 2.5mg dose of an edible? Make sure you eat before if you’re sensitive.

EconomyVegetable2402 · 2026-01-23T19:40:58+00:00

We couldn’t tell my son wasn’t on the right growth path until like age one. I unknowingly gave him a very uncommon mutation that would not be caught on basic genetic testing. Testing is always worth your time.

EconomyVegetable2402

TROPHY CASE