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Not Mrz Nikki

@notmznikki.bsky.social

290 followers 220 following 1.3K posts

Restless spirit on an endless flight. Snake Charmer. From the “country,” married into the 🌾 COUNTRY 🌾

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Not Mrz Nikki @notmznikki.bsky.social · Apr 22

✨My name is not Nikki✨

Not Mrz Nikki @notmznikki.bsky.social · 23h

Not me, just realizing that tomorrow is my husband’s birthday 😵‍💫

Not Mrz Nikki @notmznikki.bsky.social · 1d

I did make a protein broccoli cheddar soup this weekend, but I followed the recipe and I will not be following the directions again. Will use mostly the same ingredients. They had you blend up carrot, onion, & celery and the texture was not right

Not Mrz Nikki @notmznikki.bsky.social · 1d

Spoke with another family that works with our ent - they were there because tubes have been in the 4y/o’s ears for 3 years and won’t come out on their own 🥴

Got to tell my husband - “see? It’s not the dr’s fault”

Not Mrz Nikki @notmznikki.bsky.social · 1d

4th set of tubes, here we go 😵‍💫

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Not Mrz Nikki @notmznikki.bsky.social · 1d

I really got thrown off by having a Monday surgery scheduled Thursday 🥲 I am going into the week free-balling. Good luck everybody🥴

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Not Mrz Nikki @notmznikki.bsky.social · 3d

This is the way you message someone from your past randomly 😆

Not Mrz Nikki @notmznikki.bsky.social · 4d

If anyone is inspired to join, lmk and we can both save $ 🙂

Not Mrz Nikki @notmznikki.bsky.social · 4d

His most recent pair are made of titanium! ENT changed things up after the 2nd set came out, too, but I’m glad we’re moving to these now. Dr Google said it’s normal to not use these until you’ve had 3 failed tries. STILL. Run me my money back.

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Not Mrz Nikki @notmznikki.bsky.social · 4d

The ones he will get Monday work like a wall anchor. Once the tube is placed, little arms come out on the other side (like a T) to hold them in place. There’s still a chance it comes out, but it’s much less likely.

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Not Mrz Nikki @notmznikki.bsky.social · 4d

It makes a lot more sense, knowing what we do about his immune system now. Makes me feel better, anyway. Still sucks

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Not Mrz Nikki @notmznikki.bsky.social · 4d

Kiddo still gets ear infections with the tubes in & the pressure pushes them out (only the left this time). We now know he’s immunocompromised because of this ENT. We adore him lol

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Not Mrz Nikki @notmznikki.bsky.social · 4d

We should get trade in-value for the ones in his ears now 😒

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Not Mrz Nikki @notmznikki.bsky.social · 5d

We haven’t even finished paying for the tubes he got in June 🥲

Not Mrz Nikki @notmznikki.bsky.social · 5d

I’ve been in therapy a number of times, but I wasn’t ever really in a place where I really wanted to or knew I needed to get help. I wasn’t ever completely honest and kind of just meh about it.

I understand so much more about myself and my trauma now - I’m excited and hopeful.

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Not Mrz Nikki @notmznikki.bsky.social · 5d

Thank you 🥰🥰 I can’t wait to order prints

Not Mrz Nikki @notmznikki.bsky.social · 5d

Surgery Monday for his 4th set of tubes 😵‍💫 t-tubes this time

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Not Mrz Nikki @notmznikki.bsky.social · 5d

I want to give gifts to our team of doctors. What’s appropriate?

Imlunologist snd I have talked about scotch?
No clue for ent

Not Mrz Nikki @notmznikki.bsky.social · 5d

I signed up for better help today. I can’t continue using coping methods that aren’t doing anything. I need to grieve my mom. I need to be strong for my son. I need to be able to communicate better with my husband. I can’t handle the constant flight or fright mode anymore.

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Not Mrz Nikki @notmznikki.bsky.social · 5d

I love him so much it hurts

Not Mrz Nikki @notmznikki.bsky.social · 5d

Thank you 🥰

Not Mrz Nikki @notmznikki.bsky.social · 5d

🥹🥹🥹🥹

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Not Mrz Nikki @notmznikki.bsky.social · 5d

We’ll see the ENT tomorrow.

Naturally, J sounds like he’s getting sick. Slept 12 hours last night and took a 3.5 hour nap today 😥

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Not Mrz Nikki @notmznikki.bsky.social · 5d

out as we enter cold/flu season.

Pending genetic test results, we might be looking at either monthly iv immunoglobulin supplementation, or weekly/biweekly shots at home 🥲

We’ll end up being referred to another specialist. Dr said once genetics enter chat, it’s starting to get out of his range.

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Not Mrz Nikki @notmznikki.bsky.social · 5d

Dr is ordering genetic testing to see if anything was passed down through me, and hopefully pinpoint *which* immunodeficiency he has.

He also wonders if there’s a link between whatever and my chlorine toxicity response?

Anyway, we’re starting 2 nasal sprays that are used off-label to help him..

Not Mrz Nikki @notmznikki.bsky.social · 5d

Followed up with immunologist today.

My son has confirmed immunodeficiencies. His t-cells don’t remember antigens, so he has no protection from XYZ, even if he has already been exposed/infected/and even vaccinated, after a certain amount of time.
He’ll be getting his third Prevnar vaccine.

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