AFM takes on DC

When things begin to fall into place, you feel like this was a meant to be moment.

That happened this week to me!

I'm a member of a group of families fighting for more awareness of Acute Flaccid Myelitis. It's an amazing group of people looking to support each other, help get answers and reach for ways to make this more known for more answers.

Well the group hit it big this year. News sources across the country finally took notice. Many of us had the chance to get our voices heard, and heard it was. So much so that a group of parents are heading to Washington, DC to speak to Congressmen, Senators, the CDC and so much more.

I was in awe at all that was happening. The speed it was happening, and excited to see the outcome!

Then that fall into place thing I started with....

Another mom reached out to me and found ME plane tickets to get down to DC to be a part of this group. Knowing I work to be a voice so long. We've been friends dealing with this since the beginning. So it started with the plane. Then the group were able to get a house together so no one needs to finance accomodations for the time down there. Kids were cared for at home.

Super excited!!

Next day the group got notice we will be able to meet with the CDC, then my own represenative responded with times he could meet with me. Followed by planning to meet with my state Senator, who happens to the Senate Minority Leader. (That one is still in the works, but it's in the works!)

Then last night as we were all on video chat, the e-mail came in with times to meet with NIH. With times for potential meetings at the White House!

I'm telling you, things are falling into place and it was just meant to be our year.

So folks... I fly out this coming Wednesday, November 14th. Know what makes that day even more special and why I feel this is meant to be... November 14th will be EXACTLY 4 years since JD was officially diagnosed as AFM!!

Kyphosis

When you hear how this is all a once and done. I think it's done to kind of put you at ease. You are allowed to breath again "knowing" that you have survived it all. Everything is going to just get better, and you don't have to worry again. Right?

That's what they want you to believe!

But they also throw the curveball of, "This is the first we've seen this, so we don't know."

And that's the rub of it all. No one knows what the future holds for any of these children!!

And 4 years out we are still battling that. Our latest development in all of this ...

Kyphosis

At all our appointments, the doctors have been watching JD's spine. When he was sick and so thin his spine protruded so much. I accepted it was from him being so sick. Now that we are thankfully putting on weight, the curve in the spine is still noticeable. Noticeable enough that two of his doctors commented, and one put in a referral to a spine specialist.

We got to enjoy the wonderful world of Shriner's. They do make the waiting areas much more child friendly, and JD was enjoying it after our couple hour drive.

They took him back and put him in shorts and a t-shirt. Which was much more comfortable than those gowns! And had him go for a special x-ray in their new EOS x-ray machine. Followed by evaluation and screening and so much more.

Final diagnosis is that he does most certainly have Kyphosis. However, we are going to watch and see. Since this doctor does not have all of his previous scans and information, she doesn't know how quickly it is developing. He hasn't hit puberty yet and will continue to grow. She's worried about treating to early. So, we go back in 4 months.

This is the real life of this! There is no one and done. Like your typical cold.

It's life altering....

It's life changing...

It's ongoing....

And it has no answers to where the story actually leads!

Only answer I have is we will continue to fight and battle and this Superhero will win!!