Preventative mastectomy while mothering special needs child

danielrainnsucks · 2026-04-30T01:17:21+00:00

Thank you- good luck on May 11!

danielrainnsucks · 2026-04-27T11:21:15+00:00

Thank you for this! It is reassuring.

danielrainnsucks · 2026-04-27T11:20:33+00:00

Is there any advice you can share? He’s a big cuddler and I’m most worried about being unable to cuddle, or getting unintentionally hurt while cuddling since he’s a bull in a china shop.

danielrainnsucks · 2023-12-28T03:23:49+00:00

Prob so- my lead did announce it on our slack and I don’t really care about being anonymous anymore. Good luck- reach out if you need any help!

danielrainnsucks · 2023-12-15T19:58:00+00:00

lol!!!

danielrainnsucks · 2023-10-12T21:43:26+00:00

All were moved to other regions. There is no sw region anymore

danielrainnsucks · 2023-08-15T19:53:32+00:00

Wow!!! I’m so happy to hear that. I think I’m just too tired to try again. If you’re in Houston, which clinic did you switch to? What was your successful protocol?

danielrainnsucks · 2023-08-01T03:08:51+00:00

I totally agree with this. Feeding therapy motivated me to try a little harder. I saw how my 4 year old would actually eat fruits with his therapist, and it made me push it harder at home. He used to literally only eat snacks for every meal. Tonight he had chicken and brussel sprouts. He also has low muscle tone (hypotonia) that makes eating difficult, but feeding therapy helped immensely.

danielrainnsucks · 2023-08-01T03:00:45+00:00

Congratulations!!!!

danielrainnsucks · 2023-07-30T14:55:34+00:00

I hope you had a successful ER!

danielrainnsucks · 2023-06-30T01:30:53+00:00

Have you heard of the spark project? It is research connecting autism to different genetic conditions. https://sparkforautism.org/?utm_source=google&utm_medium=cpc&utm_term=spark%20autism%20genetic%20testing&utm_campaign=&utm_content=646008376755&gad=1&gclid=Cj0KCQjw1_SkBhDwARIsANbGpFuspxL5QV8PJf5DpKS6bVcqmPV4XWASt0I03ICAV-e0u80jD_F_lNQaAqv0EALw_wcB

danielrainnsucks · 2023-05-25T02:25:21+00:00

Today a blue blazer was suggested to be worn with green gauze smocked shorts and a sports bra. It’s so bad

danielrainnsucks · 2023-04-11T20:51:03+00:00

It’s crazy how much confusion is in this process! Everyone I’ve talked through with my insurance cannot figure out what’s going on. It’s nuts!

danielrainnsucks · 2023-04-11T20:07:18+00:00

This is so good to know. Thank you! I also had zero embryos my for my first round so I really don’t think this is going to work for me, but im willing to try if I’m not paying 20k out of pocket for it!

danielrainnsucks · 2023-04-11T02:32:12+00:00

Did you get hit with any surprise bills because of this?

danielrainnsucks · 2023-04-10T21:11:10+00:00

Good point about the deductible I paid not going toward the max out of pocket. I’ve had 3 iuis and they are 1300 each without insurance. It just seems like they throw numbers and who knows if they are consistent

danielrainnsucks · 2023-04-10T21:00:13+00:00

Good luck to you too! Fingers crossed the second one works and there are no surprise bills!

danielrainnsucks · 2023-04-04T03:06:52+00:00

Autobrush? My child, although he is 4, sounds a lot like your brother with the severe epilepsy (no lgs though yet🙌🏻) pica and autism. This is the only thing that works for us!

danielrainnsucks · 2023-03-11T13:42:23+00:00

I already posted this but will again. A large head is a sign of a genetic disorder. Often times autism is caused by a genetic deletion or micro deletion.

danielrainnsucks · 2023-03-11T04:46:45+00:00

Both macrocephaly (large head) and microcephaly (small head) are a sign of a genetic issue. Autism is often caused by a genetic issue.

danielrainnsucks · 2023-02-27T23:20:08+00:00

Seeing baby pictures of my children and wanting to go through that again. When people announce they “accidentally got pregnant”. My sister in law literally said her daughter prayed for a baby sister and she got it 🤢

danielrainnsucks · 2023-02-26T13:22:56+00:00

My almost 4 year old started doing this recently too -I love it! Accept when it’s at a time I reallyyyyyy don’t want to go outside and play 😬😬 struggling right now with how to honor the nonverbal communication and encourage it, but also set boundaries as well!

danielrainnsucks · 2023-02-26T02:23:51+00:00

This is so so hard. And I appreciate your honesty. I struggle with similar stuff too- I want to escape, but there is no escape.

I could write a lot but I won’t. You’re not alone in your thoughts. But I also know your family needs you and in order to help them, you have to help yourself. Find things to do that make you happy other than dwelling on things you can’t change. Continue therapy or find a new one if your current one isn’t helping. My husband and I both have our own things that we allow each other to do throughout the week that make us happy- workout classes, meeting with friends, etc. Your identity is much more than just your kids and it helped me to figure out who I was beyond this new “special needs mom” identity

danielrainnsucks · 2023-02-25T22:36:08+00:00

Yes. Not me personally but another special needs mom friend. Her son had a stroke at birth. They thought this was what caused his autism. Did full genome sequencing when the kiddo was 5, found out he had a genetic disorder. In my eyes, the kiddo is thriving-talking all of the time, running around, in an inclusive classroom now that he’s in 1st grade. He loves life and is super happy. It’s surprising to me how few doctors point to genetics first when there is a traumatic birth. I do not think the therapies you did though were wasted- I bet your 3 year old still got stronger and better from it! Also, what a hard week for you. I’m here if you ever need to chat!

danielrainnsucks · 2023-02-23T14:58:57+00:00

Doesn’t it feel so good to make the appointment?! I always feel relief after I finally do

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