Wednesday, February 13, 2013

Well check for Bug

Today was Riley's well-check, NOT March 13th like I originally thought. Oops! That's what confirmation phone calls are for, right?

Anyway, we got away vaccine free (until next year, dun dun dunnnnn...) and I'm happy to report that his growth is off the charts. No more failure to thrive for him!

We mutually agreed, though, that we think he has his first fibroma. It rose up fast and large, and I'll be doing serial photos with scale to see if it keeps growing. He also has a spot on his cheek that we're keeping an eye on.

Because she couldn't determine the nature of the possible fibroma (dermal vs. plexiform,) we're both researching when he needs a full-body MRI, and who refers for that, so that we can check for fibromas on the inside in his muscles, on his nerves, and on his spine.

He has some mild tibial bowing, but nothing that she feels needs to be seen by ortho.

I came home and cried.  I'm not going to lie to you. To have my fear confirmed, to know that the disease is progressing and so must we, is humbling. I thought we'd skate by, just dealing with the learning delays and the minor cosmetic issues.  To know that this is developing into MORE, that there is more room for it to all grow and become worse... well, it's something I already knew, but had been able to bury my head in the sand until today.

Still, though, he remains happy and healthy for the time being, and that's all that matters.  My fears cannot govern our day to day life; instead we must continue on in our pleasant existence and hope for the best.

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