Ready or Not...

If you've been following me for a couple years, you may be familiar with the journey we've been on with Grant and the congenital nevus on his scalp. If not, here's the original post. Heck, maybe you've been wondering what the hole in his head was from - I know a lot of people do...I think they're just unsure of how to ask. Guess I would be, too.

We've finally come to the place where we're exploring the options of reconstruction to the area, which we always knew would be in his future. The grafted skin from his hip that replaced the nevus will never grow hair and it's just too large of an area for existing hair to cover it. This is the part where, for some reason, I always feel I should defend our decision to have this done, but I'm not going to do it. We're parents - we want the BEST for him, plain and simple.

When my insurance originally denied the removal procedure deeming it "cosmetic" (totally ridiculous!), we looked for other options and got connected with Shriner's in Cincinnati. We'll be making a tentative plan with Shriner's for the reconstruction sometime in the next couple months, but we want the best results possible, and for us, that means getting multiple opinions.

Today, we're going to see a local plastic surgeon at Peyton Manning Children's here in Indy. The two options we seem to have so far are: 1. a series of up to three surgeries to remove a small portion of the scar tissue from the graft and pull the scalp together each time (waiting at least 6 months between each surgery), or 2. using tissue expanders under his scalp to create new skin (that would still have hair follicles) to cover the area after the graft was removed. Neither is quick, easy, or painless so we have to carefully considering both.

I'm nervous and excited all at the same time. Nervous to think about the reality of Grant being uncomfortable or in any kind of pain from upcoming procedures and excited to start to put a close to this chapter of his little life.

It's been a humbling journey that's given Tim and I tremendous perspective. I've found family after family through blogs, YouTube, etc. that are experiencing far more challenging journeys with nevus removals and reconstruction. What an education!!

Here's some of Grant's journey...WARNING: a couple of the images are a little graphic.

Grant at 8 months - this is around the age when the hair on the nevus really got thick, coarse, long, and dark!



His last bath at Shriner's the night before surgery. Thank God he had no idea what was coming - he was such a trooper and everyone at the hospital was amazing!

Immediately following the surgery. We were shocked at how large the incision area was. The foam dressing over the graft area was stapled to his scalp...so strange to see your child like that!

This is an entire story in itself...the graft was removed from his hip, closed with steri strips, and four days later broke open. An awful sight and traumatizing to daddy who was home alone with him when it happened. Lots of blood! Grant was so brave through it all!

The result as we see it today. His hair has really thickened up, which almost makes the graft area more noticeable (at least to me). The skin also gets much darker without any hair even when we smother it with sunscreen!