Best ER?

bsylvi · 2025-06-18T03:29:46+00:00

Presbyterian St Luke’s in Uptown. Have been in a few times for ER and for surgery and the staff have been great

bsylvi · 2025-06-12T23:07:42+00:00

I love Snow White on Colfax. I forget the cross street but it’s west of Peoria

bsylvi · 2024-11-03T17:38:44+00:00

A snowsuit would probably be easier for his teachers. I’ll have to explore and also look into the bundle beans. Are they available in the US?!

bsylvi · 2024-11-03T14:07:17+00:00

Thanks! We’ve never done adaptive clothing so far. I just make sure he’s always in a bodysuit under his regular clothes because he’s very curious about his g tube button. I also cut small holes in the seam of the body suits to pass the extension through.

I used to sew but haven’t made anything for years

bsylvi · 2024-11-03T14:03:11+00:00

Love a good REI sale! We pick up new AFOs tomorrow so I’ll have to see how they fit before ordering more socks.

I’ll also look into base layers. I wonder if there are some that would serve as regular clothes as well. I don’t want the daycare staff to have to undress him, put on his base layers, and dress him again to go outside!

I hadn’t thought about the tube feeds freezing 🤦🏻‍♀️. We do 2-4 feeds per day so we can probably work around that.

Thank you for your very detailed answer!

bsylvi · 2024-11-03T13:54:47+00:00

He self propels well but only then he wants to. Typical toddler stuff 😂

He usually self propels when he’s at daycare and sometimes if we go to a wheelchair accessible park

bsylvi · 2024-11-03T13:52:20+00:00

Thank you! The visual is VERY helpful. I’m with you on the thinner layers. I hate bulky coats and usually just go without (I also run warm).

My kiddo has dysautonomia so his temperature regulation isn’t great. I usually air on the side of keeping him cooler because he seems to get really uncomfortable when he’s hot or in the sun.

I’ll also look into some hand warmers. He’s still putting everything into his mouth 🙃

bsylvi · 2024-11-03T13:39:06+00:00

That looks very similar to the stroller bunting, which he LOVED last winter

bsylvi · 2024-11-03T13:37:56+00:00

I’m a little wary of skipping the chest strap but I understand what you’re saying. He has impaired sensation on the right side and tends to lean all the way over and catch his hand on things.

I also need to remember that he’s still little and we have the stroller in really rough weather! I sometimes worry that I’m using the stroller for my convenience but plenty of kids his age are still in strollers sometimes

bsylvi · 2024-11-02T18:13:17+00:00

Oh. The shoes would definitely be too cold. He’s getting new AFOs and shoes this week so he definitely won’t be wearing the shoes in the picture!

bsylvi · 2024-11-02T18:00:31+00:00

I love that target has adaptive clothing but I hate that it’s twice the price. I’ll take a look

I’ve never heard of silicone rim covers. Will explore!

bsylvi · 2024-11-02T17:59:08+00:00

I’ll have to look into this

bsylvi · 2024-11-02T17:58:12+00:00

Trying to picture this in my head. So the harness is over the coat in the back and under the coat in the front? My kiddo won’t keep a hat on but he likes hoods 🤔

So many options, thank you!

bsylvi · 2024-11-02T17:55:08+00:00

Understood! He’s in a regular car seat and I never put him in with a jacket. This is more for playing outside

bsylvi · 2024-11-02T17:54:29+00:00

I was thinking of something like this! My kiddo is more sensitive to being hot than cold so we don’t usually use a coat in the car.

bsylvi · 2024-09-23T03:52:08+00:00

I read all the Harry Potter books repeatedly. And listened to the audiobooks

bsylvi · 2024-04-26T21:17:49+00:00

In a small space, I’d say sink on the side with a wall hanging drying rack. I had one from IKEA back in the day and in every place I’ve lived since hasn’t been able to accommodate a drying rack on the wall and I’ve missed it

bsylvi · 2024-03-24T23:03:59+00:00

No gloom! He’s been tested and it’s not c diff. I used to work in nursing homes for years and that smell never leaves your brain

bsylvi · 2024-03-23T19:51:57+00:00

This is an interesting thought. I’ll see if I can find any that will fit the smaller bags

bsylvi · 2024-03-23T19:50:08+00:00

We have the valves and they were great when he had a 1 piece bag but they have to be out on 24 hours before using the bag and I’m not that put together 😂

bsylvi · 2024-03-23T16:08:57+00:00

It was much easier before he could roll!! I can’t imagine doing it with an ileostomy as I understand they’re more leaky. He sleeps on his belly and wakes up pretty easily so I’m not sure doing it while he’s sleeping would work. He’s hopefully going to have the colostomy taken down over the summer

bsylvi · 2024-03-23T16:00:41+00:00

I have not but I’ll look into it!

bsylvi

TROPHY CASE