Sigh of Relief!

Wow, it's been almost a year since I've written on here! That's because our "freckle" journey has been very quiet lately.

Keziah had her last surgery sometime in June of last year, where they lifted up her eyelid a bit as it was getting pretty heavy. Other than that, we haven't done anything in regards to her freckle, and had not been back to Toronto Sick Kids.....until today.

I was notified this past Monday night by a recorded message from the hospital that it had been a year since Keziah was last seen by the dermatologist and that an appointment was booked for today. I thought of cancelling it as I had totally forgot this appointment was booked and so I was not prepared. But knowing how important this appointment is, we made arrangements and off we went to make the trek to Toronto.

Boy, I have *not* missed this at all!! It didn't help that it was pouring rain pretty much all day! Just under 2 hours there, 2 hours back. A trip that really should only take 45 minutes. But hey, we arrived safely there and back, so much to be thankful for.

Keziah is one of the best travelers around, though. She passed the time away, colouring.

Dear Patches has come with her every trip to the hospital since the very first one. This time, another stuffie-friend joined him :)

We only had to wait about 45 minutes until we met with the dermatologist. This girl has had to change into a hospital gown more often than she should have to, however she does it every time with no problems or fears, despite what these gowns usually mean.

After answering lots of questions about all her freckles, satellites and moles, the inspections began. This is when I always get a little nervous. They use a magnifying glass surrounded by very bright lights, and any that they feel need to be looked at closer, is done. They are looking for irregular colour and shape, signs of melanoma.

So you can imagine the deep sigh of relief that comes out of me when I hear, "Well, they all look good and there are no concerns of melanoma at this time."

The threat of melanoma isn't on our minds much at all.......however we can't ignore the reality that the danger is there and we need to remain diligent in her sun care. This always hits home every time another member from our nevus support groups has been diagnosed with cancer, or in the worse case, when they pass away from it. It's not common, yet, with this condition of congenital melanocytic nevus, it's a slight higher risk - hence the sigh of relief after today's appointment.

We didn't get a count of freckles/satellites this time, but more have been popping up. The derm did say that after the age of 6, everyone's freckles tend to pop up and show themselves. The important part is that Keziah loves every single spot :)

After next year's appointment was set, we headed back home. We picked up this gaffer from a friend's home - thanks to this friend's mom who was able to have  Lincoln at the last minute.

Before we got home, we did make that final stop....to Tim Horton's - which has always been included every time we have to go the hospital. The kids were happy to split a donut!

 

So, as long as none of her moles change, we don't have to go back until next year. As for surgeries, nothing will be done until she is a teenager - once her head stops growing. She often states that she is so thankful for the nevus left which is in the shape of an eyebrow. Her scars under and around her eye are a bit red/brown. I am not sure if it's connected, but we have been a bit lax in the massaging of it. We shall start doing that again and see if that helps.

In the mean time, this girl shall continue to create and imagine her way through life! Life is grand in her eyes when she can play, play, play. She has grown up so much since this journey started, pretty much 5 years ago this month. Ack!!! My heart!!!!

Look at her now....7.5 going on 16.

Although most of the main freckle is missing, that bright and sparkly personality continues to shine through. We have so much to be thankful for! We praise God for safe travels today, and a favourable outcome. But most of all, we praise Him for this treasure of a gift, our beautiful, brave girl. May our God continue to keep her safe as she grows emotionally, physically and spiritually.

Thanks again for reading! Take care for now!!

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!!

Dermatologist Appointment

Keziah had her yearly dermatologist appointment today back at Toronto Sick Kids. She goes in every year as they like to keep an eye on her freckle, taking pictures and noting any changes (darkening, thickening, bumps etc.). I didn't tell her we were going until the day of. Last time, when we went back in September, I told her a few days ahead, which resulted in some anxious moments at night (bed wetting). This time, because her appointment was later in the morning (11 o'clock), I knew I would have time to tell her that morning.

Because her appointment was at 11 that meant no traffic jams (by no traffic jams, I mean that I didn't stop once until I hit Islington. That's pretty good!! And then it was stop and go all the way to the hospital).

She was pretty excited to go......until we ran into this thing:

These statues were everywhere in the hospital, with two on either side of the entrance doors. She would NOT go in because of them. And having learned my lesson from the witch incident (find this story at the end of a post on my other blog), I did not try to convince her they wouldn't move :o) I just picked her up and carried her into the hospital.

The waiting wasn't too long, giving her a little time to colour and to play.

Once in, the dermatologist had a look at her freckle; of what's left of it anyway. They were very impressed with the work that was done on her face. They had last year's picture from our appointment and couldn't believe the changes!! Using a special light and magnifying glass, they inspected what was left and other than it being quite dry, which is common for having a congenital meloncytic nevus, it all looked great!!

For the scars, she gave me this to use:

Have any of you heard or used this before on any scars? She just gave us samples for now. I am just wondering if it's worth purchasing....

Because having CMN also can mean having satellites (smaller moles), we checked the rest of Keziah's body to see if any have popped up. Satellites can pop up anywhere and at any time. I know of some that have 100s to 1000s of satellites, whereas others don't have any at all. Some of these satellites can be large and others quite small.

When born, Keziah was checked over and there were a few spots, but they were really light. I have noticed over the past year or so, more spots popping up. She has quite a few on her legs now. They are quite light in colour, but I have also noticed that a few of them have that dark coarse hair coming out of them. The dermatologist did not think they were satellites, but we will need to keep an eye on them. So far there are about 6 or 7 on her right leg and almost 10 on her left leg.

(Chant with me: I will not be jealous over her gorgeous skin colour, I will not be jealous over her gorgeous skin colour, I will not be.......)

And so we go back in a year to have these all looked at again. For now, I've documented them and will keep an eye on them (and for others) until then.

Once her appointment was over, we enjoyed a bagel and timbits together. Correct me if I am wrong but I think she liked the cream cheese :o)

And then it was time to go home!! Going to the hospital continues to be a tiring affair for her!

Happy to be home!

And so am I. Going to the hosptial is draining in many ways. It takes up a good chunk of your day (gone from 9:30-2:00), dealing with traffic and whatnot. But the most draining part of it all is keeping my mother bear reactions down to a minimum. You would think that walking through a hospital, a children's hosptial no less, people would be more sensitive to the fact that you are going to see things that are "different". I actually find the hospital to be one of the worse places for her to be stared at!! What gives?? I don't get it. And it's not just "oh, she has something on her face" kind of staring. It is the "oh my! The poor girl. What in the world is on her face? Maybe if I stare longer and harder I'll figure it out" kind of staring. Yes, it is very hard to deal with and so I do not enjoy going. At all.

Education is huge! Hopefully this blog has helped in that regard. Once educated, the need is less to stare. And that goes for all things, conditions, differences, what have you. And may we all recognize the Creator of us all, the One who NEVER makes a mistake.

Life Changing (Part III)

Home. With a baby girl. Incredible.

From the moment we came home, our front door became a revolving one. It was always opening and closing, welcoming family and friends, showing off our little bundle of joy.

The first few weeks were quite a blur, as it is with most newborns. We welcomed anyone that wanted to visit for more reasons than just wanting to see them. We wanted to make sure people saw Keziah for themselves, as of course, so many were curious as news passed along about Keziah and her birthmark.  By doing this, we were hoping to prevent rumours. We didn't want it that by the end of the week, her birthmark went from her forehead all the way down to the tip of her toes!! You know how rumours go.

Being so busy with visitors the first few weeks was helpful also in the "waiting period". Although we had Keziah in our home, we still had to get through a month or so in which her birthparents still had an opportunity to change their minds. This time period ended September 4th, which was met with great relief and yet sadness and empathy for her birthparents.

And so our life really began as parents. After 11 years, it was quite the adjustment to say the least. And not only were we adjusting to finally having a baby of our own, we were also trying to adjust to having to take her out in public where she was stared at constantly. But despite those stares, we showed her off!! We were so proud of her and to have her! We felt quite strongly about presenting her as "normal" and so we took her everywhere with us, especially to church. It was very important to us that our church family could get as much exposure to her as possible to help them see past the birthmark and see Keziah for who she was. These people were Keziah's family of faith, and it was essential that she fit in, was accepted and loved by all who would be a part of her life. Let's just say it didn't take long at all.........people fell in love with her pretty quickly.

We also started the process of getting in to meet with a plastic surgeon, one in MacMaster and one in Sick Kids. At the time, the surgeon in Mac had never seen this before, and so that made the decision easy: we are going to Sick Kids, to the surgeon that has dealt with this for 30 years! The referrals were sent in with some pictures right away from our family doctor, and we saw the surgeons for the first time when she was 9 months old.

Below you can see pretty well the size of her birthmark. You can also see that by her eyebrow, it is the fleshiest, lightening a bit above and then dark again. When she was born, she had gorgeous black hair everywhere but on the birthmark. It didn't take long though for the hair to grow on it, and boy, once it started to grow, did it every grow fast! And thick!

 

our gorgeous girl, sleeping outside so peacefully 

 loving daddy's whiskers!

telling daddy all her problems :o)

Around 2-3 months of age, I did have Keziah wear a lot of headbands and hats. The reason for this is not only because it looked so cute on her, I also knew it was imperatif for her to always wear a hat in the sun. I knew if I tried to put a hat on her when she was 9 months old, she would just try to take it off, so I figured I would start early and make it something as normal as putting on her shirt. It worked because to this day it has never been a problem keeping a hat on her!

 

 

When she was about 4-5 months old, she started to lose her hair everywhere, except for on her birthmark! Oh, she looked quite funny! By this time the hair on her birthmark was long and had a mind of its own! This is when she also had her first haircut (yes, I kept the hair :o)

 

But right from the get-go, it was not only her birthmark that captured attention, it was these eyes of hers!

 

After a few haircuts, the hair on her birthmark became quite nice and wavy. Then we had to deal with the hair on the rest of her head, which stood staight up as it came in!

 

We could finally tame the hair in pigtails, but as the hair grew, it became quite obvious that one pigtail was quite a bit thicker than the other, thanks to that birthmark hair. Oh well.....it added character :o)

Every morning, I always made sure I had the camera ready as I went to get her out of bed. I must say, I think she would win any "Best Bed Head" contest, hands down! :o)

 

 

And that is why her hair is done in some fancy do all. the. time. The hair on her birthmark has gone from soft and wavy to very coarse and kinky and will not lay flat. Oh well, it's a good thing I love to do hair! And she looks so cute with it always done nicely. She was born with quite the cowlick on the right side, which worked in her favour. Now that her skin was stretched, that cowlick you see below was moved over and is  now dead center.

(happy two year old!)

(yup....LOTS of hair!!)

So, there you have it. A few posts from when the journey began. I know I am working a bit backwards, but I thought I'd use these three posts to bring you up to present time. Although there were many tough days in the past 3 years, we wouldn't change anything. We've been so richly blessed. And every day we are so, so thankful for this goofus that was brought into our lives, even though it meant taking home a baby that didn't look "perfect". But you know what? She was perfect.......perfect for us.

Oh, and so is he, our handsome blue-eyed little man!!! But a post on him in a week or so :o)