Thursday, March 14, 2013

8 Months and Counting....

It has now been 8 months since Keziah received her "new face". We are actually also approaching the date where a year ago she went in for her first surgery to put the expanders in. As a matter of fact, I just checked my first blog was exactly a year ago today that I started this blog! Amazing how time flies!! But more amazing is how much and how far we have come in a year.

A year ago, we were really wrestling with what we were planning to do (which you can read here if you are interested and haven't read it yet). As the journey began, we were filled with dread, anticipation, excitement, fear, worry, eagerness, angst, distress, apprehension, contemplation, hope and wonder. And that's not even all the feelings we were feeling!!

And here we are today. What have we learned? Well, when we look back at the pictures of her with her full birthmark, her surgeries and expansions, we are in awe. We shake our heads in amazement with how "big" of a project this was, to remove her birthmark. But that's not it. We also are instantly humbled. There is absolutely no way we could have gotten through some very dark and tough moments without the help of our heavenly Father. He was there every step of the way. It's good to remember this as we are nearing the month of May. But more about that later in the post. Time for a picture update of this beautiful little lamb of His!!

Her skin graft continues to heal very well. As you can see in the above and below picture, it is pretty much the same colour as the rest of her face.

Her scars are looking pretty good as well. Just over a month ago, a few spots opened again on the scar in her hair but after a few days they healed up. I am not sure why they opened up, but they are gone now. Another thing that is still happening 8 months later is that there are still a few stitches that haven't dissolved yet. We just had one 2 weeks ago come up by her eyebrow and now it's gone.

Now onto May. We are to call Sick Kids the second/third week of April to book an appointment in May. At this appointment we will be planning with Dr. Zuker about her eyebrow. The plan before was to take skin from behind her ears (from the ear itself, not the head), take what is in her eyebrow off and replace it with that skin. He was also going to touch up her "droop" of the eye.

We have some decisions to make before May. The biggest decision we need to make is what to do with what is left on her scalp. As you can see in the picture above, the birthmark goes from above her scar to the top of her head, then below her scar to the front of her ear and behind it, covering pretty much the whole left side of her head.

We have contemplated just leaving it, with the approval of our surgeon. You can't see it anyway. But there are some factors we need to consider if we leave it. Some are small and some are big factors to think about:

Her hair that comes out of her nevus is incredibly coarse and thick. She actually does not have a lot of hair that comes out of it, but each strand is about as thick as 15 of my strands.

Here's the thing. I belong to a fantastic and supportive nevus group and so I have contact with adults that have a scalp nevus. There is a great possibility that when she hits her 20s, she will loose her hair on the nevus. We have even met a handsome young man face to face who has the exact same nevus as Keziah, and he has hair everywhere but on his nevus. He had lots of hair on it when he was younger but it is gone now. He figured it was from wearing a ball cap all the time, but having seen pictures of other adults with a scalp nevus, it does happen even if you don't wear a ball cap. For a guy, that is one thing. But for a girl?? If this happens, that means she will be bald all on the left side of her head.

But this is where it is difficult to decide what to do because it might not happen either. Some of these adults have a few nevi on their scalp, and some of the nevi have lost hair, and others haven't. So how do we know if this will happen for sure or not?

And if we do remove it, will disrupting the hair follicules also cause baldness??

With the nevus being in her hair, another factor is that it is hard to monitor for any changes (like any mole, it needs to be monitored constantly for the slight higher risk of melanoma).

Groan. It is so easy to let all those feelings listed above to inch their way into our hearts and minds as May comes closer. But this is when I need to remember what I wrote earlier: to not get caught up in all the emotions and questions, but to pray and lean on the One who has and will be there as we come to a decision.

If we do choose to remove it, that will mean another expansion, one that will go under her hair in the back of her head. As for how long we would need to have it filled, how big it will be and whatnot, we do not know. That is what the appointment in May will be about as well.

So we are just going to have to hang tight. And pray. We pray that we will be able to make a decision and be at peace with it. Ultimately we want what is best for our daughter. Age is a a factor here as well. Walking around with an expander in her head at 3.5-4 years of age would be a whole lot easier than in her 20s if she were to go bald. But maybe she wouldn't even go bald. Here we go again.....see? It's a constant cycle of what ifs. Sigh. Too much thinking of the future. We will concentrate on today, with prayers on our lips for May.

(where did my baby girl go?? Not only has she lost most of her birthmark in a year, she has also lost those pudgy little cheeks she has in that big picture at the top of her blog, which makes her look like a preschooler. Boo!!)


  1. But that lovely confident smile is still there! :) Blessings, dear family. Aunt C.

  2. Praying for you and with you! Even if her cheeks are no longer as pudgy as some time ago and she no longer looks like a toddler, she is beautiful. With your daughter now a pre-schooler, you will get to enjoy a whole new stage of life; different but no less wonderful.

  3. Wow!
    Those really are big decisions aren't they! Certainly not ones anyone takes lightly. What a comfort that we have a Father who guides us. Know that one decision will not be WRONG over the other. God has revealed/is revealing to you what the options are and when you make the decision, He'll guide you through the consequences, whatever they may be. For better or for worse. Again, what a comfort!
    Blessings, and peace from all of us,
    Joanna deBoer (Chris, Peter, Annemarie & baby Joseph)