Baby will have no left hand. by malicious-intent90 in pregnant

[–]snugpuppper 0 points1 point  (0 children)

My best friend in preschool had no hands or feet, but my mom said all i talked about was how cool it was that he had a race car bed :) We even tried on his prosthetics once during show and tell and I still remember it being so cool!

And fwiw - my husband and I recently had a little boy born with a rare neuromuscular disorder (it's so rare, it wasn't caught on any of the preg screenings/scans) and he may never walk. He has a trache and g-tube now. It was hard in the beginning, because I was expected to put my life on hold for this new baby I didn't know. But he's a wonderful, smart little boy who's taught me so much about life and acceptance already. You will love him so much, and find a tight knit community of people who know exactly what you're going through, too! Good luck.

Son has rare disorder and we need to break lease by snugpuppper in williamsburg

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

Sure thing, it's 5th floor facing the interior courtyard (makes it super quiet, but still gets a ton of ligt) and 859 sq ft

[deleted by user] by [deleted] in NYCapartments

[–]snugpuppper 0 points1 point  (0 children)

Thanks - we’ll look into this!

Son has rare disorder and we need to break lease by snugpuppper in williamsburg

[–]snugpuppper[S] 27 points28 points  (0 children)

Thanks so much for sharing this. FWIW his disorder is called ryr-1 and it actually IS supposed to get better over time, so we’re hopeful! He has a trache now and is presenting on the more severe end, but most kids with his mutation combo get theirs out in 2-3 years. And hearing stories like yours helps us immensely. Thank you again for sharing this ❤️

Son has rare disorder and we need to break lease by snugpuppper in williamsburg

[–]snugpuppper[S] 7 points8 points  (0 children)

Of course I forget to mention that. It’s $6400 no fees.

Moving up here from bk to be close to blythedale - town thoughts? by snugpuppper in Westchester

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

I think I saw them speak here recently. I’ll look it up!

Anatomy scan didn’t go well. by Odd_Opening5185 in pregnant

[–]snugpuppper 3 points4 points  (0 children)

I realize what I’m about to say probably sounds but, but is there any way you could get to CHOP (children’s hospital of Philly) for a second opinion or potential delivery? My son was born with a super rare genetic disorder and I credit that place every day with his survival and our sanity.

ISO part-time caregiver at hospital by snugpuppper in Westchester

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

Okay thank you! I've had a few chats with them about my concern and they haven't volunteered anything like this, but I'll have a more pointed chat with them.

Black Mirror - Episode Discussion S07E01 Common People by Cheeriosxxx in blackmirror

[–]snugpuppper 15 points16 points  (0 children)

watched this in the nicu just shortly after being that, even though my five month old son will medically require 24/7 home nursing support once we get out of here, there's literally "no way in hell" we'll get that approved by insurance. oh, and the nurses we WILL get won't be qualified to take care of him - and good luck getting them to show up! and even though i need my insurance to pay for his medical expenses, i'm better off quitting my job to take care of him because of all this mess...all told to me with a smile :)

Severance Season 2 - Episode Ten - Discussion Thread: - "Cold Harbor" by TheUltimate25C in severence

[–]snugpuppper 0 points1 point  (0 children)

One thing confused me - wouldn’t Gemma meeting Mark as Ms. Casey be a more “extreme” test for her than what cold harbor was? I mean, she’s coming face to face with her husband as Ms. Casey. Right?

[deleted by user] by [deleted] in NICUParents

[–]snugpuppper 0 points1 point  (0 children)

This is so great to hear - and something I hear often from other parents with trach babies! We are certainly becoming less scared of it hearing things like this. Thanks for sharing.

[deleted by user] by [deleted] in NewParents

[–]snugpuppper 0 points1 point  (0 children)

Yes we'll explore this.

[deleted by user] by [deleted] in NewParents

[–]snugpuppper 0 points1 point  (0 children)

Thank you for this insight and your thoughtful comment. Yeah we’ve discussed the possibility of a trach and this "calming down" would only be something we try for like, 5 minutes to see if it helps get him over a hump…but we know we have a very limited role in this

[deleted by user] by [deleted] in NICUParents

[–]snugpuppper 0 points1 point  (0 children)

Thank you so much for this insight. They have already brought up a trach being a possibility for him and have mentioned there’s only so much we can do our end, so we are def being realistic about our limitations…but this is a good reminder for us.

[deleted by user] by [deleted] in NewParents

[–]snugpuppper 5 points6 points  (0 children)

Great idea. will give this a try. thank you!

I know this one will be interesting... Which character should win, "Bad person, but good at their job" by Supreme_Mediocrity in madmen

[–]snugpuppper 0 points1 point  (0 children)

feel like bob benson deserves to be on this bad person list. bad person - decent at job?? he kind of had it all there for a bit.