Canada Day Weekend

*this post may have a picture or two of blood, so see this as a warning for you queasy ones :o)

A year ago, we were sitting in the hospital with our daughter, who had just undergone 7 hours of surgery. On June 29th, 2012, the Friday of the Canada Day weekend, we headed to the hospital bright and early with Keziah, an overnight bag as well as a whole bunch of emotions that just could not be put into words.  We were so ready for those large bubbles to come out. We were done with driving back and forth to Toronto every week. We were ready to take her out in public without others looking at her like she was a freak. It was an exciting time. But what would she look like without her freckle?? Will her left eye be left totally messed up, droopy and pulled open? What about the scars? Will they look worse than the freckle? Will we regret this whole journey??

(Months later, and I mean like more than 1/2 a year after the above picture, Keziah saw a wheelchair in a book. When she saw it, she said "I've been in a wheelchair before and I didn't like it because they put me in one and pushed me away from you. And I wanted to stay with you and daddy." That is pretty much the only "negative" comment she has ever said about this whole journey so far. Not too bad, eh?!)

After an incredibly long wait, we were ushered into the recovery room, only to walk right by her, not recognizing her. Can you see why??! We went from large freckle, to freckle with two large balloons, to no balloons and hardly any freckle. Un.be.liev.able.

She looked amazing. Was this really our girl??! Incredible. The next day, the swelling started. And boy, did her face swell up!! It didn't faze her one bit though!

After a two night stay, filled with visitors, we were discharged to go home. We were to be back two weeks later for the skin graft to be revealed and that awful pump to be taken out.

Thankfully, it didn't take too long for the swelling to go down and tada, we were left with this. Breathtaking, no?!

And so, a year has passed and not a single regret has surfaced in our minds with what we put Keziah through. Going through these pictures again is hard, especially knowing we are going to be doing this all over again in a few months. But it also reminds us of Who is with us every step of the way: God. He has been and continues to be our source of strength and wisdom.

It is amazing how a year has gone by already. I do believe that a year ago, a toddler went into surgery and out came a preschooler. She has grown up so much in the past year!!

This almost 4 year old, or, as she says "more three-er", continues to be a joy. We have talked briefly about what is to come in the fall, but so far so good in regards to her reactions. We shall see when the time comes closer. So far we haven't received a surgery date. While we wait, we are enjoying every minute of this summer we have been having, with 4 camping trips planned, praising God for all His goodness.

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.

And so it begins again....

On May 13th (which is less than two weeks away already!!), we will be taking Keziah back to see Dr. Zuker at Sick Kids. At this appointment, we will be making a plan with him as to what to do with her eyebrow as well as what is left in her hair.

After 10 months of not having to deal with hospitals, the nerves are starting to set in. We haven't told Keziah yet that we will be going back. We don't want her face to go from this:

to this:

We have talked about the hospital a little bit more lately and so far it's gone well, with her talking of good memories. But we don't want her to worry too much, so we will tell her the day of.

Everything looks like it has healed up so nicely. Her skin graft continues to look great!!!

We look forward to seeing how things will look once the heavy darkness around her eye in her eyebrow is replaced. It will hopefully stop the same questions that come up every time this girl leaves the house: "Oh my, what happened to your eye? How did you get such a black eye?" While it is understandable that people see this as a black eye, this is what Keziah thinks of always being asked these questions:



After the appointment, we will update you as to when the surgeries will be taking place as well as what exactly will be done. I know this girl will tackle things like she did last year....always with a smile on her face!

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 post.....it 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!!)

6 Month Update

It has now been six months since the removal of Keziah's freckle. Things continue to heal very well. Her skin graft, as you can see below, can still be quite pink at times, but more often than not it is the same colour as the rest of her facial skin.

Keziah continues to remain happy and positive about her whole experience. It rarely comes up and if it does, statements are said without fear.

You can see below that there is hardly a scar where her skin graft starts. You can also see that in this picture it is so close in colour to the rest of her face.

My innocent, shy, and timid darling.......

Or not. :o)

When Keziah had her full birthmark, I knew what people were staring at. Now, I forget and so when I see people staring at her, I find myself looking at her for something funny on her face, like ketchup or chocolate that hasn't been washed off yet. And if they aren't staring, they are asking. We continue to be baraged with questions by people who are wondering how she got such a black eye. For the most part we just quickly explain, in a matter of fact way, that it's just a birthmark. When it's the 8th time that day, the possibility of being impatient arises. But that 8th person doesn't know how many times we've been already asked so we do still need to be patient. I can see around the bottom of her eye that it looks like a bruise, but the eyebrow? Oh well. It is what it is. 4 more months and we'll be back at Sick Kids to deal with that.

In the meantime, we will keep enjoying this beautiful smile of hers with her ever-sparkly personality!

We know the next 4 months will go fast and we'll be back at the hospital. Look at how fast the last 6 months went. Actually, look at how fast the last year went! Today is not only 6 months ago that she had her surgery, today is my baby's first birthday. But more about him on my other blog (here)

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.

4 Month Post-Operation

Today marks the 4 month mark since Keziah had a good part of her freckle removed. 4 months ago already! That means she has been without her freckle longer than with those big ole expanders! Remember those??!

Unreal. I cannot believe that she looked like that at one point. Just the other day I was flipping through this blog and came across the blog where I had each "fill" pictured (find it here: Observations and Reflections ) It left me breathless and in tears. But it also left me with a sense of awe as to how much strength we were given at the time. Sure I noticed her cheek and forehead while going through it all, but not to the extent as I do now when I look at the pictures. Now I can really see what others saw back then. Wow.

But here we are, 4 months later. Her healing continues to go very well without infections. The only complication that is developing is her droop. Now it is quite noticeable compared to a month and half ago. And it will continue to droop more and more as time goes on, until we meet Dr. Zuker in May, where he will deal with it as well as the rest of the birthmark on her face (which by the way is NOT face paint!!! Do you know how often she has been asked what is painted on her face???).

Her skin graft is looking amazing!!!

Most of her scars are not too pronounced except for the ones in her hair. She has quite the wide scar where there isn't any hair growing, which leaves it quite noticeable. The big wide scar is like a backwards "C", going from the top of her head, around and down to meet the top of her skin graft.

And a top view

So doing her hair can be a bit tricky if I want to "hide" the scar. That front chunk of hair in the "C" likes to fall forward and so the only way to have it cover the scar is to pull all the hair back. Even with two simple braids on either side of her head doesn't hide it as that hair in the front loosens and shows the gap.

But really, it's not that big of a deal. All things considering, dealing with a large scar like that and a droopy eye is nothing compared to what others have to deal with. I belong to a nevus support group, where parents and nevus "owners" can gain support from one another, whether they go through removal or not. And let me tell you, what Keziah's birthmark looked/s like is nothing compared to what others have. And the same with the whole process.....we have had nothing but success, whereas others have had one complication after another (and serious ones, too!!). Lately I have been going through a bit of guilt as to how well things have gone for her. I pray my guilt doesn't take over my thankfulness.

Although her face has changed from birthmark to expander to hardly any birthmark, one thing hasn't changed, and that is her beautiful and contagious smile!!