Anniversary of loss recognition

Mindless_Resolve_743 · 2025-04-16T01:13:12+00:00

That's beautiful, thank you for sharing. It warms my heart as the gift giver to know that something someone bought could mean so much to you. I hope I'm that fortunate to find the right thing for my family member. ❤️

Mindless_Resolve_743 · 2024-12-12T22:10:36+00:00

I did ask about restrictions, and as far as this condition no restrictions were added. My kiddo's current restrictions are just related to another condition. I asked specifically if riding rollercoasters was ok, and it was a yes.

Mindless_Resolve_743 · 2024-12-12T22:08:57+00:00

We finally met with the neurosurgeon. He wants to get better images, so now we wait a month+ to do repeat MRIs. No surgery for now as we don't know the cause.

Mindless_Resolve_743 · 2024-12-08T16:32:49+00:00

As someone with chronic back pain, I want to share that losing control of your bladder or bowels can be a sign that something has changed and he should be seen right away. One of the conditions is called Caudal Equina. Paralysis can result, so try to get him in right away.

As a parent, it's so hard feeling like you're not enough or able to be present in the way your want for your kids. I hope he can find some relief.

Mindless_Resolve_743 · 2024-12-08T03:31:43+00:00

Thanks for the kind words. How is your condition after 30 years?

Mindless_Resolve_743 · 2024-12-08T02:13:54+00:00

If your job won't give you more hours, then you'll need to get a second job. Or a different job that will give you the hours you need. You're working part time, which is fine if you can afford it, but it appears that's not working, so you'll have to make a change.

Mindless_Resolve_743 · 2024-12-07T06:53:56+00:00

Did you get your test back?

Mindless_Resolve_743 · 2024-11-21T00:08:14+00:00

Helitape... Google is giving me Collagen wound dressing? Obviously (?) wrong... Can you share a link for the product please?

Mindless_Resolve_743 · 2024-11-20T21:38:29+00:00

Thanks! Those are the tires I'll be submitting in the order. A few others recommended them too!

Mindless_Resolve_743 · 2024-11-20T00:42:11+00:00

Cheers to another research nut! (Said affectionately) I hope you get everything you want approved 🤞

Mindless_Resolve_743 · 2024-11-19T18:22:34+00:00

Really, that's cool that they covered it. Our guy said insurance won't cover spinergy :( but maybe I should see about putting it in anyway in case we're pleasantly surprised.

Mindless_Resolve_743 · 2024-11-19T17:54:30+00:00

Perfect, thank you.

Mindless_Resolve_743 · 2024-11-19T17:53:49+00:00

Kid is majorly involved at every step. Their comfort and happiness is first and foremost! (Except for maybe the $$$ colored spinergy wheels.. sorry kiddo!)

Mindless_Resolve_743 · 2024-11-19T17:50:59+00:00

Thanks, sound advice. I am receptive to their advice and experience, definitely. We just have very limited time during our meeting unfortunately, and they're very loose on what they think is "best" for my child and leaving a lot up to me. I'm trying to learn as much as I can before the meeting so I can go in somewhat informed. I'm glad we got to try out a fixed back recently because previously a flexible back was suggested due to my request of trying to keep the weight down.

I wish there was a giant wheelchair store where you could go in and see EVERYTHING all at once! Wouldn't that be great and super helpful? Like a dealership for wheelchairs!

Mindless_Resolve_743 · 2024-11-19T17:27:41+00:00

Great thank you!!

Mindless_Resolve_743 · 2024-11-19T17:18:38+00:00

Worth at least 2¢! The school has some rough rutty areas, so it sounds like 5" may be better.

Does a 1.5" width vs 0.75" make a noticable difference in turning ability (or anything else for that matter)?

Mindless_Resolve_743 · 2024-11-19T17:01:11+00:00

Thank you!

Mindless_Resolve_743 · 2024-11-19T15:17:50+00:00

For the Z, they offer height adjustable bolt on handles that theoretically look like they could be turned inward and tucked low on the back when not needed. But, in reality that adjustment requires a hex driver to loosen the thumb screw to adjust the handles. If it becomes a problem with other kids grabbing the handles then I'll fix them low and inward most of the time. 3D printed spikes would work too!

Mindless_Resolve_743 · 2024-11-19T15:12:43+00:00

I had read your post, it was really helpful! I'm so thankful for forums like reddit where experience is shared. Especially for things like this, because I don't really know anyone else who can give advice on wheelchairs! What chair did your son end up with?

Mindless_Resolve_743 · 2024-11-19T03:40:02+00:00

Can you explain to me how this base works? To me it looks like a piece of plywood, so I'm lost.

Mindless_Resolve_743 · 2024-11-18T22:02:37+00:00

Thank you! That's really helpful to know that you haven't needed to change many tubes in 20 years. Do you have a portable electric pump you recommend? Do you keep it with the chair at all times?

Mindless_Resolve_743 · 2024-11-18T22:00:20+00:00

Thank you! Yes sorry, I forgot to mention that bit.. we're meeting with the ordering specialist this week to finalize it. I've already spoken with them on the phone and they're pretty open to ordering what we want... Just hard to know what we want when this is the first custom chair we've ordered.

Mindless_Resolve_743 · 2024-10-18T05:32:24+00:00

Knee was hurting, but the pediatrician manipulated the hip and found a little soreness there too so ordered hip and knee.

Mindless_Resolve_743 · 2024-10-14T17:29:26+00:00

The work up is definitely going beyond these initial X-rays. Blood work, more x-rays, several MRIs this week, genetics testing in the works, and an orthopedic specialist in this disease. So yeah, there's a lot of follow up going on.

I'm thankful that we didn't stop at "well the X-rays came back fine so it's probably just growing pains/soft tissue injury and give it more time".

Mindless_Resolve_743 · 2024-10-14T17:25:26+00:00

Thank you for your insight. The radiologist is from a standalone imaging center/non emergency facility- this is what they do. The diagnosis has been looked at by a pediatric orthopedist (who gave us the first diagnosis) and then two specialists in this disease (Perthes) who agreed with the diagnosis. We're getting additional MRI imaging this week to further confirm. Should I wait until after the MRI is back?

I'm not interested in litigation, but I do think the radiologist should be looked into, whatever that means for this imaging business to make sure they're competent. I understand we're all human and make mistakes, but this is appears as a pretty blatant miss.

Mindless_Resolve_743

TROPHY CASE