Partnering with your doctor

Amy:

It took me a few times, but now I’m that hospital mom momma bear. …After the lab techs come up, and they poke her twice…I’m the mom that’s not afraid to ask for the anesthesiologist because…if they waste 6 different poke sites, just trying to start one IV, we’re gonna be in trouble for that whole hospitalization.

And I had had different experiences with doctors and hospitals, so I knew right away that if you walk in and you act like you own the meeting, you own the meeting. And that’s what I did.

You have to be aware of what’s going on. And you know your child best.

David:

Thank God for doctors.

…They’re trying to do their best to serve you… So you have to treat them well. But at the same time you have to be an advocate when you present to a, ah, an emergency room or a medical situation with your child.

You won't get it from yelling. Don’t do anything like that. Just persistently be an advocate for your child.

You have to do it as a parent, and we’ve been teaching our son, to be his own advocate.

Do it sternly, firmly, consistently. Do not back down. If you do not get results, find somewhere where you can.

JESS: Hi, I’m Jess.

MIKE: I’m Mike.

JESS: We have three beautiful girls. Lucy, who’s 9, Emmy, who’s 6, and Alice, who’s 3. And our little Emmy has a urea cycle disorder.

It definitely impacts all of us, not just Emmy or just Mike and I. Lucy has had the biggest impact out of all of the girls. She went from having all the attention and it just being her, to having a sister with special needs that she had to share a lot of attention with.  

She has stepped up and is a nurturer and she takes care of Emmy. She makes sure that she gets where she needs to be. That she has friends. She watches out for her everywhere we go. Every day when I pick ‘em up from school, she’s holding her hand and walking her to the car.

JESS: You can’t do this by yourself. You need a team. It takes a…

MIKE: A village.

JESS: A village to raise any child. But definitely in a situation where you have a child with special needs, you have to have help.

We have a lot of RAVictories with Emmy. Any time she learns something new, makes my Mama heart so proud just to watch her succeed at something.

When she hits her 15 grams of protein in a day. Drinks all of her milk in the same day.

With her protein goals, we’ve always struggled to get her to eat. So, any time that we hit her protein goal, it’s a RAVictory. It’s something to celebrate each day.

My RAVictory for us, for me at least, is Emmy telling me she loves me. She didn’t always used to do that. And now she tells me she misses me. I took a business trip for work. Was gone for 3 days. And it’s like I was gone for a month and she couldn’t wait to tell me how much she missed me. That’s definitely a RAVictory in my book.

Each time that she hits a milestone or something, she’s beating expectations. So, it’s amazing to us and makes us excited. And so her starting school this year, she’s been making friends and kids are wanting her to come and play at their houses. And it just makes me so happy.

Something that I hope for Emmy, she recently has started a dance class. And she really loves it. And it’s so great to watch her dance, ‘cause she has the biggest smile on her face. She really loves it so much.