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Natalie Weaver Profile picture
@Nataliecweaver
Sep 3, 2018 • 4 tweets • 2 min read • Read on X
We made it to the hospital for surgery #27(reallyyyy early) and there were several emergency surgeries so we have to wait. Not sure when surgery will begin.

I’ll make a thread of this tweet when there are updates.

Thanks for the love! It makes a difference. #SweetSophia
Stillllllllll waiting for surgery....⏱ but glad my girl is resting.
They have taken #SweetSophia back for surgery. Hoping she has recovered and no further surgeries requiring reconstruction or kidney removal will be necessary. This girl is pure strength and constantly surprises us & her surgeons on how well she recovers from things. 🤞🏻
Ummmm... Check out this Rockstar! She is home.

Surgery went well. They had to place a new stint because the repair hasn't healed enough. We can go a little longer before the next surgery to determine if this repair is going to work.

Thank you so much for your support!💜

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More from @Nataliecweaver

Natalie Weaver Profile picture
Sep 19, 2018
Do you think that I'll ever be able to just post photos/videos of Sophia w/o vile comments, ignorant questions, judgments & criticism? When a typical mom posts moments of joy, happiness, pride, love, sadness, fear etc. they aren't met with this experience, for the most part.😔
I even get criticized for being too positive or inspirational. I'm proud of Sophia and I like to share the pride that I feel for her. Would this be said to a proud mom of a typical child?
I get criticized for being too negative because I share the sad and scary moments like the surgeries and the possibility of losing her one day. Again, would a mom of a typical child expressing these fears during scary moments in their lives be criticized so harshly?
Read 4 tweets
Natalie Weaver Profile picture
Aug 18, 2018
This is Ella. She’s been a part of our family for 7.5yrs. She was Sophia’s 1st nurse aide
I cried the night before she started bc it was the realization that I had to depend on others to help care for my child. This is when Sophia received 2ndary Medicaid bc prv ins wasn't enough
Ella has been there through it all. She has been the most dependable person in our lives. Without Ella, I wouldn't be able to go to the grocery store or take my other kids to the park. Without Ella, we wouldn't be able to sleep through the night. She has changed our lives💜
Someone advice: Never depend on others, it's my own fault 🙄 What do you do when your child’s life depends on you depending on others like nurse aides and Medicaid? You set aside your preconceived notions & you gratefully depend on others to help keep your child alive.
Read 5 tweets
Natalie Weaver Profile picture
Jul 7, 2018
In two weeks, we will have a production/film crew in our home. They’ll film our life for 3 days. This will air in 150 countries. You will see the pain, struggle, joy, and happiness but what you will see through it all is the love.
You will realize your family isn't all that different from mine. Sure, we have to go through a lot more than most and Sophia needs a lot more to have a good quality of life but the love is the same.
One of the reasons for my advocacy is to educate others which is why I agreed to do this. It is important for people to see what life is like for families that are different from theirs. We need to normalize disabilities and facial deformities.
Read 8 tweets
Natalie Weaver Profile picture
Jul 5, 2018
I’ve been thinking about the damage the @GOP & @realDonaldTrump is causing me & parents like me who fight for their child’s quality of life everyday. It feels like they are terrorizing us. I’ve lost time with my family while fighting and gained increased anxiety & fear.
In order to live a happy life with all that we go through, I’ve learned that I must live in the moment. I haven’t been able to do that over the last year and a half. I’ve had to think about my child’s future death & what would happen if she lost her healthcare. It’s been horrible
I’ve gotten her through several stressful surgeries while in the thick of this fight to protect Medicaid and the ACA’s prexsisting condition protections and lifetime maximum bans.
Read 6 tweets
Natalie Weaver Profile picture
Jun 26, 2018
My daughter has epilepsy.

@realDonaldTrump & the @GOP want to allow insurance co. to deny preexisting conditions

This means no seizure meds & increased seizures.

This means no emergency seizure
meds to stop dangerous seizures.

This means brain damage.

This means death.
Hey @realDonaldTrump & @GOP Have you ever watched your child’s body uncontrollably shake and jerk all over? Can you imagine an insurance co. denying coverage & losing the medication that decreases this from happening & losing the emergency meds that stops brain damage & death?
Why is @realDonaldTrump & the @GOP willing to increase my child’s already increased risk for death? Why are you putting families like mine through hell? Stop trying to take disabled people's healthcare!!! Stop trying to kill my child!!!
Read 5 tweets
Natalie Weaver Profile picture
Jun 20, 2018
Throughout the fight to protect healthcare, ppl would say to me that the Nazis got rid of disabled ppl first. I never thought that could be possible in the US, until now. The @GOP has unveiled another attempt at ripping healthcare from the most vulnerable, my child included.
Why are they hell-bent on making healthcare impossible to receive for people w/ pre-existing conditions? While kids are being ripped from their parent's arms, they unveil their attempt to harm disabled Americans, AGAIN!
Even as a @realDonaldTrump supporters used my disabled child's image to promote eugenics, telling me to kill my child, I never thought it was possible. Now, I'm not so sure. Now I am really scared.
Read 4 tweets

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