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!!