Advocate Hard

Recently, I was asked to speak for a small group of parents of children with physical limitations. The topic: How to be an Advocate for our Children. So I thought I would do a test run passed all of you!

It is not a secret that Ethan and I have had to push a lot to get Ollie the appointments and care that we felt that he needed. After coming out of doctors appointments numb, disappointed and frustrated, we knew there was something that we as parents could do.

Step 1: Research, Research, Research.

I am the type of person to want to do my own research. Not just the science behind Ollie’s malformation but rather to find others like him. I started to look everywhere but I was most successful on Instagram. All around the world I have been able to pick the brains of parents or find individuals with malformations. To be able to hear what medications they are taking or what surgeries have been most successful has been incredible. It has let us go back into doctors appointments with pointed questions and lets our doctors know that we are doing our own homework.

We found Zac from Zac Attack the Cure for Lymphatic Malformation on Instagram! He sent Ollie this awesome shirt from his website, zacsattack.com

Step 2: Get that Second Opinion

In Grand Rapids, we were told that Ollie’s only option was to go on medication for the rest of his life, surgery was not an option and that we should just hope for the best. At first we listened. But then the more research and connections we made, the more Boston Children’s Hospital would come up. We applied for a virtual second opinion through a program that Boston Children’s uses called Grand Rounds. Through this we were able to send all of Ollie’s images and chart to the doctors to have them review. Within a few weeks we were sent back a second opinion. With that, a whole new realm of possibilities were open to us.

Some doctors get a little antsy or defensive when the words “second opinion” gets thrown around but don’t let that get you down. It it essential to your child’s care for you to have all of the options and opinions.

Ollie’s first plane ride to Boston!

Step 3: Be the Persistent Parent

Getting our appointment in Boston was rough. With Ollie, he needed to see multiple doctors in one day while we were there. We would get an appointment date and then it would be pushed and pushed again. So much so that I would call two to three times a week in order to keep our appointment that we were finally given in December 2018.

Insurance is another battle as well. We went back and forth for over a year getting insurance to cover out of state care. This meant jumping through whatever hoop they sent our way. I think we had to take Ollie to three or four different specialists that we knew we didn’t want but had to prove that the state of Michigan was not prepared to to take on a case like Oliver. Who has that kind of time to waste? Nobody, but we had to do it.

A rejection letter that we could not have been happier to get! Just one of our hurdles!

Step 4: In Everything Keep your Child in View

When it comes to our children, sometimes we can get tunnel vision with what we think that they need. Since it was over a year for us to get back to Boston with insurance involved, Ethan and I had a minute where we both looked at each other and said “Is this still what we want for Ollie?”. We sat down and wrote out all of the pros and cons. In the end Boston was still what we thought was best for Ollie. It is never too late to reevaluate your child’s needs and change the course of action.

I hope this encourages some of you to know that you are not alone in this whole advocate process. It is hard to keep going and pushing for the things you know your child needs. But ultimately, your child NEEDS you to push for them and be that voice. So get out there and Advocate hard for your babies. Please know that there are others out there that are feeling the same so do your research and reach out to them. We cannot do it alone!

These boys love their MomMom!

2 thoughts on “Advocate Hard

  1. Stay strong and hold on tight to courage. Oliver needs your strength and commitment .

    Like

  2. You are an amazing advocate for your children! The group of parents will be blessed by all you have to share! Continued prayers for your sweet family!

    Like

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