Results of Fill #1

Keziah was pretty excited to go back to the hospital again to see Dr. Zuker. She even had time in the morning to make him a picture. He quite liked it :o)

(it was very important for her to colour Dr. Zuker with a white coat :o)

Keziah wasn't the only one excited yesterday morning. So was Lincoln! I told him he was going to go to his friend Jasper's house and that was it. 9:30 couldn't come fast enough for him.

Our appointment was for 11, thinking that the traffic will be better. It was, and we saved about 15 minutes. However by the time we saw Dr. Zuker, it was 1:00. Nathan could not go with us due to a meeting that could not be switched. Thankfully, Aunt Jenn was able to come with us!!

(the two white blobs you see are where Keziah's ports are. That is where the needle is inserted to fill up the expanders)

Aunt Jenn wasn't the only one that came with. Cheetah and Meow-meow were also honoured to tag along.

Keziah did quite well. She cried but did not freak out like last time. She definitely felt the needle go in and go back out so I am thinking I did not put enough emla cream on. I was encouraged by others (from this awesome nevus support group) to make sure I glob it on next time. And so that is what we will do.

Dr. Zuker was able to put in 25 ccs in the top expander, but he left the back expander alone. It was still feeling too tight. For example, a couple days after surgery, if you touched the expander on the top of Keziah's head, your fingers would sink in (yes, it can be a bit squeamish if you aren't expecting that to happen). As for the back expander, your fingers do not sink in. The skin and expander are still quite tight. So we will see what happens next week.

Here's some close ups of her newly filled expander:

I knew this day would come, where getting a shirt over the head would be too difficult. She did manage to get it over, but I am thinking that once that back expander is filled next week, that'll be end of pull-over shirts. It'll be all button up and zippers for the next months:

Nevertheless, she continues to be all smiles!

And of course she can rock a hat as well!

We will be back for Fill #2 next week Thursday, this time for 9:15. While the traffic will be worse, I'd rather deal with that than wait in a room for 2 hours before being seen. And the later in the day the appointment is, the longer you wait. 

Just giving you a heads up also that I don't plan on posting every update on Facebook, as I don't want to crowd everybody's wall with all of this, now that I'll be updating regularly. So either save the blog as a favourite or check back in every week or whatever, if you want to stay up to date. 

Thanks again for all the support, email and prayers for Kez yesterday! She sure has touched a lot of lives.

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!!

Home!!

It is 1:30 in the afternoon, a day after her surgery, and Keziah is now tucked into her own bed at home. We are so thankful we could come home already! She is doing well, mostly complaining of a very sore neck. That is to be expected due to what was all done yesterday.

Here are a "few" pictures of our days, to give you an idea of how things have gone:

Checked in by 6 am, even Patches!

And begins the wait:

Once we were called in, we had to wait again, but this time there were some fun things on the bed to help us pass the time away.

Just before 8 o'clock, we met the team and she left holding the nurse's hand with no problems. It was such a precious sight, one that I would have loved to capture with my camera. But I just couldn't. Instead it is committed to memory. We were oh so proud of her.

4 hours later, we met Dr. Zuker, where he let us know how things went, and then we met her in Recovery.

That scar you see in her hair is from her surgery last year. This time around, there are 2 incisions, which are in the birthmark. Those of you who can't handle seeing blood/incisions will be thankful to know I don't have any pictures- you can't see the incisions because of how dark the birthmark is.

Keziah did fairly well in recovery, as best as a 4 year old can do. As the afternoon progressed, we noticed a trend: her pain levels would elevate as soon as a TV show was over, and then mysteriously decrease as the next TV show started. :o)

 Her first visitor was Uncle Arie, who spoiled her with a stuffed kitten and a Dora balloon. He sure knows how to get into her good books!! :o) Even though she was sleeping so deeply, she all of a sudden woke up, sat up with big brown eyes, looked at Uncle Arie and said, "You gave me a Winnie the Pooh balloon and a cheetah last time!".(1.5 years ago). She then laid back down and that kitten was never far from her the rest of her stay :o)

All afternoon, Keziah's stomach was bothering her, so she felt the need for a bowl. A large one. Which definitely came in handy once.

She was in a bed this time, not a crib, so there was room for mommy to lay with her and snuggle.

Around 6ish, Keziah completely perked right up. This was great timing as Opa and Oma were there for a visit. She had some deep conversations with her Opa.

She was suddenly hungry and so she ordered her supper: bread, broccoli and strawberry ice cream. I don't think I have ever seen a 4 year old inhale broccoli like this kid does!!

Keziah did well throughout the night, being awake from 12-2 and that was pretty much it. As you can see, Patches has taken backstage to "Me-meow"

Keziah was ready to start her day by 7, declaring she was hungry:

Dr. Zuker came by around 8, we talked and the discharge papers were to be written up! Yay!!! After he left, Keziah told me she did not want to go home but wanted to stay in the hospital for a few more days. Once I told her we will have time to play in the Play Room before we go, she was relieved. :o)

By 12:30, we were heading out the door!

We praise God for blessing her with such a good recovery. We are thankful that He guided the hands of the doctors as they placed two more expanders in her scalp. And we are very grateful for the many prayers that were said on our behalf. We are also very thankful to Nathan's sister and her family, for looking after Lincoln the last few days. It is such a blessing to not have to worry about him. Nathan is off to go get him.....we all miss him very much!

My next post will have more information about the expanders, how large (hold onto your socks for this!), where they are and what the timeline is for all of this to be done.