Gearing Up for Fill #1

It is the eve of fill number 1. The first of many to come as those two expanders become larger and stretch the skin needed to replace Keziah's birth mark on her scalp.

After finding out how large these expanders are, some have asked why they are so much bigger than last time. The reason being is that there is so much  more nevus to remove this time than last time. It is hard to imagine the birthmark being larger than what was on her face, but the mark on her scalp is quite a bit bigger. You just can't really see it and so it is easily forgotten.

The following pictures will show the area that is all birthmark, as well as the type of hair that comes out of her birthmark. As you can see below, her hair on the left side is very coarse, kinky and dry. That is why her hair is always done up, to control that wild hair. This hair also does not get wet. Water just runs off of it:

With her last removal, some of her scalp nevus was removed off the top. For the following pictures, I parted the hair along the edge of the birthmark on her scalp. All that you see on the inside of the part, all the way to her scar line along her hairline, is her scalp nevus.

To give you a better idea as to how much is on her scalp, I pulled up some baby pictures of her. When she was born, her hair was jet-black....and so was her birthmark, which interestingly enough didn't have a stitch of hair on it. But that sure changed in a hurry! Within a few months, her jet-black hair had mostly fallen out and now her birthmark was covered in hair! So when she was born, you couldn't really see how far back her birthmark went, as it all blended in. But once she lost her baby hair, you could really see the nevus. All that black you see on her left side is birthmark (not the black on the back....that's still baby hair that hadn't fallen off yet)

And one more...not of her birth mark, but of her and her oh-so-squish-able cheeks she had. Such a dolly!

So, yes, what is left is much larger than what was taken off of her face. And that is why the expanders are so large. For those of you who don't know what an expander looks like, here is a picture:

All of it is under the skin, including the port (that white lid looking thing that is on the end of the tube). To fill it up, a needle is put through the skin and into the port. Then saline water is syringed through.

Tomorrow we go in for 11 to have both filled up a bit. I do plan on keeping a weekly photo update like last time, that way if you do see her in person, you hopefully won't be too shocked. It is gradual but it will definitely change her look for a few months. You can already see the top expander if you look carefully at her hairline:

Quick funny story.....she was making a chain link for our Christmas tree. I challenged her to make it as tall as she was. After a while she measured herself against it and then piped up "Oh yeah! I have to put more on. I forgot I had a bubble on my head." :o)

She has no problems going tomorrow. We will see how she does during the actual fill. That is the part I am dreading about this whole thing. Last time she absolutely freaked out every.single.time. I am hoping that it may be easier this time around because she is older. We shall see. In the meantime, we will focus on the fact that there is a light at the end of the tunnel.......we already have a surgery date for removal!! February 19th here we come!!!

P.S. Keziah isn't the only one older.....so is this guy. Last time he was four months old when we started the fills.

This time he is 23 months old!!!

Proof again how quickly time goes. And that will be same for the next 2.5 months. We ask for your prayers, that these fill-ups may go well and that they aren't too stressful for Keziah. Thank you once again for reading!!

A Week Later....

Here we are, a week past surgery where two expanders were placed into Keziah's scalp. Keziah is doing very well and you would never have known even 3 days later that she was in the O.R. room for a few hours. She picked up where she left off the day before surgery, sassy and girly as I'll get out. The only difference we could see was physically.

When she woke up in the recovery room, she right away complained of a very sore neck. Her neck bothered her for a few days afterwards, and it's no wonder. About 4 days later, this is what her neck looked like:

No, she is not jaundiced. That is all bruising!! And the yellow and green didn't stop there. Over the weekend, we noticed quite a bruised hairline and skin graft. Not sure if you can see it in these pictures or not...

(don't mind the frown. She's four going on 16....:o)

To take her mind off of her discomfort, a few of her friends and cousins came over to play.

The bruising is now pretty well gone, and so is the swelling. This means we can really see those expanders. So where are they and how big are they?

Well, do you recall her last two expanders? Let me find a picture of them....

Big, eh?! Wow. At its fullest, the forehead expander had 215 cc's and the cheek one had 135.

So you can imagine how quickly our jaws dropped to the ground when Dr. Zuker told us after surgery that he placed an expander on the top of her head that fills up to 680 cc's and one in the back of her head that fills up to 500 cc's. That's right....triple the size of those expanders you see in the pictures above!! Is that even possible?! Oh yes. Thanks to the very supportive nevus group we belong to, we know that expanders can be even larger, over 1000 cc's. And we also know the skin can be stretched successfully (usually) that much.

Actually, he first told us that the one on her head was 860 cc's. I think I asked him 4 times "860 cc's??! Really???! That big?! Are you serious??!?". And then after a few minutes he said, "Oh wait, not 860 cc's, but 680 cc's.". I think that may have been his way to keep us from having a heart attack, for after all, 680 sounds so much better than 860 does it not? It does....until you remember the size of her previous expanders and you couldn't believe how big those ones were. Apparently, those were nothin'!

In another 10 days or so, we start slowly filling up the two expanders. The top one already has 60 cc's and the back one has 35. We will see Dr. Zuker on Thursday, December 5th (Happy Sinte Klaus to us!) for her first fill. I will not be anxious, I will not be anxious, I will not be anxious, I will not be.....

I did take some pictures of her scalp nevus before surgery, which I will post next time. It'll make sense as to why the expanders need to be so big.

Take care, and thanks for reading!!

Game Plan

Yesterday was a big day. We met Dr. Zuker to come up with a game plan and "where we go from here". Dr. Zuker was incredibly pleased with the healing process. He marvelled at how well the skin graft took and looks. I think (I have no idea) this was one of his best outcomes!! And we are so happy with his work as well.

However, this appointment was a more difficult meeting this time, as this is the first time we have not quite seen eye to eye with our trusted physician. It has left me in tears, confusion and worry. The thing is, I went into the appointment feeling this way and I was so hoping to leave with a calm stomach and less anxious thoughts. That did not happen.

Here's the thing: Dr. Zuker does not think it is necessary to remove what is in her hair because he has never heard of a nevus losing hair. At one point, he totally dismissed my concerns and kept on talking about what he wanted to do next (what is left around the eye). When I asked him again about our concern for hair loss in the future, I could tell he was a bit annoyed as I would not let it go and that this could mean his game plan will change. And I couldn't let it go because it is a very real possibility of her losing her hair! We also had no plans to remove what was in her hair.....until we came into contact with adult scalp nevus owners.

Nathan reminded me that he works at a children's hospital and so he may not be aware of adults with a scalp nevus due to the fact that he doesn't deal with adults. But we have seen with our own eyes, adults who have lost hair from their scalp nevus in their 20s.

Once Dr. Zuker saw that we wanted to seriously address what was in her hair, we could see him slowly getting used to the idea that his original game plan of just dealing with the eye could very well be changing. He mentioned that it would be a huge undertaking and a big job. By the end of the appointment, he had a plan for what was in her hair and he said "Let's go for it."

We will begin in the fall - yay!!!!! That leaves the summer wide open for swimming, camping and all the other wonderful outdoor activities we love to do! Dr. Zuker's secretary will call us in the next few months, once they know the O.R. schedule, with a date to insert two expanders in Keziah's head. Once we've expanded and removed, then we will deal with what is around her eye. This means rather than being done this summer with everything, it'll be another 1.5 years or so.

He was concerned that it will all take longer and may run into her starting school. I reassured him that if that means she misses a bit of kindergarten (no worries for this September as we were never going to send her to jk anyway), then so be it. It's not like I've never taught a 5 year old before :o)

So that is the game plan. You would think we are relieved and happy. Unfortunately, like I stated above, I left in tears and more confused than ever. It is not enjoyable to feel like your trusted surgeon is not on our side. Are we wrong? Is he, the older, wiser, more experienced, wrong?? It makes me question everything, whether we really should just leave it; whether to trust his disbelief of going bald; if I know for sure she would not go bald, we would just leave it. But we don't know!!! And because we've met others that have, I cannot get that worry out of my mind.

As Nathan says, we go ahead and then we don't have to worry about it later for her. That is true.

But you know what else I am struggling with? And this may seem silly (I'll probably think it is once I've writeen it all out and read it over), but I actually worry about what Dr. Zuker thinks. I worry about messing up what he wanted to do, about being a pushy mom, about bringing up things that are not "true" (in his eyes); about coming across that I think I know more than a well-known and respected doctor who specializes in this; and the people-pleaser that I am, it bothers me that I may have annoyed him. I don't want him annoyed at me.

Believe me, going ahead does not leave us with joyeous thoughts either. It's not like we are eager for more fills and surgeries. Last year's fills and surgeries are not far from our minds. We know it'll be very hard and difficult. And if we could, we would wish that we didn't even have to worry about all of this. But this is not the case. We do need to address it. And we do believe that while it may be a very difficult process in the fall, we would rather do it now when she is young, then worry for the next 20 years about hair loss for her. And I think (hope) that she will thank us when she is in her 20s, knowing that it is all done and she does not need to worry about having to deal with baldness and expanders at that time in her life.

Time for a few pictures of our day to Sick Kids.

All ready and happy to go! I woke her up that morning, telling her we need to get up because we have to get going. A sleepy "Whose house are we going to?" was asked. I then explained to her where we were going. She right away responded that she will want daddy with and that maybe we won't be able to see Dr. Zuker because he'll be busy seeing other kids :o).

One of the things she was most excited to see were the fish in a tall cylinder-like aquarium. She was disappointed that they were not there (the fish are fake.....) but that disappointment didn't last long as she quickly saw the computer:

 Lots of fun playing, while waiting:

Keziah did very well, allowing Dr. Zuker to touch her face. It was no big deal for her!! She got shy a few times, but have you ever had someone staring at your face for more than 2 minutes?? A little unnerving, that's for sure.

And on the way home. Some things never change: happy, tired and with a blanket on the head!

I know a lot of people were thinking and praying for us yesterday. We thank you for that. We pray that we will continue to rely on God for wisdom. As difficult as this journey can be sometimes, it all pales in comparison to what Tim Bosma's family is going through (you can read more about that here). Right now we have put our own concerns aside and our prayers are filled for the Bosma family.

Batteries Not Necessary!

Our very own personal Glow Worm!! And an adorable one at that!!




And our very own personal Frown Face!! (guess who tried beans this week?!)

Snoozing and Cruising

We have been asked numerous times throughout this process whether Keziah needs to be careful while cruising/running around, in case she bonks the expanders in her head and cheek. The picture below was taken in March, before her expanders were put in.


As I am sure you can tell by the picture, her landing was, er, not really graceful. Let's just say it wasn't a perfect 10. She ended up with a mouth and face full of mulch!


We howled, as it looked quite funny. That was then, when grabbing the camera was more important than running to make sure she didn't pop an expander.

We will admit that when the expanders first were starting to fill up, we would consider ourselves in a category with some other parents, known as the 'helicopter' parents. We definitely hovered around her a bit more, making sure areas where she was running about was safe. But she is 2.5! She IS going to bonk her head. She WILL run into things. And she has.

One of the first times she ran into something was a few weeks ago at our friends' house. She was running to me, crying for whatever reason (she's a girl...it happens :o). I was sitting at the dining room table and wouldn't you know it, just before she reached me, she ran straight into the corner of the table. I saw the corner go INTO her cheek! My heart stopped and my stomach dropped to the floor. I quickly picked her up, very fearful of what just happened. To my surprise and relief, I could tell right away that nothing happened. That's right! Nothing!! She didn't even notice herself!! If anything, I think more damage was done to my heart than to her cheek!

That incident really proved to us that those expanders are not thin little balloons. They are thick and durable. It's almost like we needed her to do that to get over our hovering. We are more relaxed about it now, not quite as relaxed as a few months ago, but a little more at ease. But as her expanders get larger, our ease wanes. I mean, look at her....wouldn't you think she would just topple over from her head being so unproportionate to her body?! We are still fearful of her falling onto pavement and scraping her forehead or cheek, also known as the "good" skin; the fact that there is a risk of it popping, we still keep an eye on her. At church, kids often like to run after her, playing. This definitely makes us nervous because she is crowded around by kids which can make her trip and fall. So at church we tend to keep her close by.

But for the most part, we let her be a regular 2.5 year old, letting her do what 2.5 year olds like to do. She has learned now how to swing on the swing more carefully and continues to love it!



The other day it was raining, and this child LOVES to run in the rain! And look at the happiness in her face! How could we NOT let her enjoy this moment? Sure she could slip and fall (and she did as you will see), but we just couldn't deny her this much joy. Besides, then we would have denied ourselves the pleasure of watching her run about without a care in the world.






And to her, life looks even better upside down!! :o)

(yes, I absolutely cringe when she puts her head upside down. I just don't like it as I think the pressure of being upside down will do something to the expanders. I mean, my head feels like it's going to pop if I'm upside down too long, so wouldn't hers actually??! I know, it won't but it just looks uncomfortable.)

It does help that Keziah is not a hyper child, but one who is cautious (usually) and likes to do quiet things too. Below are some "safe" activities she likes to do, and I don't mind because it means no more heart failure! Heart melting, but not heart failure :o)

Reading!


(looks like Lincoln is trying to figure out what is that on his sister's head)

Baking! No problems with opening her mouth up to lick the beater....funny how that is :o)



Feeding her brother!


Painting....and even FINGER painting!!



So as you can see, life continues on for her like any other child her age. Other than dealing with the procedures, our little girl continues to be happy, usually smiling and singing, enjoying each and every day. She is a blessing I tell you. A real blessing.


As her cheek gets bigger, the question of how she is able to sleep is posed to us on a regular basis. Well, you tell me. What looks more uncomfortable, her sleeping on her cheek expander or the fact that she is in that position??! I don't know about you, but I think for me, sleeping on a bubble that goes into a pillow would be a whole lot more comfortable than with my legs like that!! And yet she continues to sleep. With no problem. :o)