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.

The Night Before

Well, it is the night before we begin the next phase of her birthmark removal. I mentioned in my last post I'd update you to see how she is doing with knowing what's about to happen.

While the surgeries and procedures are along the same lines, there is one major difference. She is now 4 and not 2. That's a whole new ballgame for us. So we shall see how this goes in the next months.

Before I tell you how she is doing, let me ask you this: how would you react, knowing you were going back to the place where you've cried and got needles? How would you feel when you remember that you were taken away in a wheelchair, away from your mom and dad?

I think I know your answer, which would be exactly like mine: I'd feel scared, nervous, anxious, apprehensive; I'd cry and beg not to go. I know this is how I would feel.

That's why it baffles me that this girl is.......get this, excited!!! Yes, you read that right! She is looking forward to it!! Crazy girl! :o)

I started talking to her last week about going back to the hospital, using the words "well, when we go, what would you like to take with you?" or "When we go back to the hospital, you'll get to sleep in a big bed this time, not a crib.". When I asked her what she liked at the hospital, she replied, "The playroom!" So I then said, "Well, when we go, we will make sure we play in the playroom." I kept this up periodically throughout the days, and she over time she knew she was going to go back. On Saturday we started counting down the nights, which she liked!

I knew I had to tell her before Sunday, because she would hear the minister pray for her, which she did! And the other reason why we had to tell her by Sunday is because we had to drop Lincoln off already. Awww, I miss those blue eyes!!! He leaves such a hole in our family with him not being here.

(don't mind the dirty face.....it's just hummus, which he eats like there is no tomorrow).

Knowing that we wouldn't have Lincoln with us the whole day before she goes in, we planned an All Girl Day, doing what we love to do and what Lincoln hates doing: that's right, shop. :o) I would love to have taken her for a pedicure, but she isn't allowed to wear nail polish for surgery. So we spent the day together, shopping. It was so much fun!!

Here she is, already to go, with her favourite zebra purse:

We hit 4 stores and then the mall. She loved every minute of it! Tonight, when I tucked her into bed, I asked her what her favourite part of the day was, and she said "The Mickey Mouse store!" (the disney store).

Then one of the employees pulled her off to the side, gave her a stuffie to relax her head on, and read her a book. It was so special!! She left with a key chain and a bookmark - for free!

She was allowed to pick whatever she wanted for lunch, and true to her nature, she picked a chicken leg and french fries. This girl LOVES chicken legs, and eats it until there isn't a stitch of meat left on the bones!

After a full day of shopping, we headed home to make Playdough together, adding in Kool-Aid for smell, and glitter for some pizazz.

And then, because Lincoln wasn't here, she could play with it right away, much to her delight (Lincoln can't play with play dough yet......not unless we want our supply to shrink. And fast. With finding most of it in his diaper the next day :o)

And if that wasn't enough, the day ended with a visit from Oma and Opa, who left her with a leap pad that she can play with while she heals up (well, once mom and dad figure out how to set the thing up!). What a spoiled girl!!!

So, I'd say all in all, it was a great day! We had so much fun together! And now she is sound asleep, and has been since 7. That's a good thing because 4:30 will be here before we know it!

We are so thankful she is quite fine about going back, to see Dr. Zuker, to play and to sleep there. Before she went to bed, she helped me pack up her suitcase. She has no problems with any of this at all. Such a blessing and answer to prayers.

The one thing I have not done is told her why she is going back. I have not told her that she is going to get bubbles again. We will deal with that after the surgery. I have asked her before whether it'd be okay with her that she gets bubbles again, and she said absolutely not. Cringe. So we'll cross that bridge later this week, or when she has to go for her first fill.

Thank you once again to the many of you that have reached out to us via phone calls, emails and messages. We will keep you updated tomorrow and the days following as to how things are going.

It's Around the Corner.....

What is, you ask? The next part of this journey, the journey we have chosen for our daughter to remove her birthmark.

It has been awhile since we walked this road, almost a year and half since her last surgery. We have enjoyed many months of no hospital visits, which we are thankful for. Keziah has healed up really well from her last surgery, which encourages us. This encouragement is needed because the stomach is starting to clench and the sleep has started to elude us (well, me), as the surgery day gets closer.

While it is helpful to know we've been down this route, and we know what to expect, it is also at the same time scary. We know what is ahead! While it's nice to be familiar with the surgery and the procedures that are to follow (weekly expansion fills), it is also terrifying that we are about to embark on this again.

This week was filled with phone calls from Sick Kids in prep for Tuesday. Keziah also had her pre-op done, which she did with no problems, even with lots of smiles! Well, lots of smiles until she needed her blood taken :o(

To get her blood taken, we had to go to the Lab here in town, the same place we went almost 2 years ago as we prepared for that surgery. As I parked in, our conversation went like this:
"Mom, have I been here before?"
I hadn't told her yet why we were there so I answered:
"I don't know......have you?"
"Yup! I remember I was here before and I cried and cried and cried. I just don't remember why I was crying."

Sigh. I didn't tell her until they called her name what she was there for. Although she cried and was not too impressed, she did a great job! And so a sprinkle donut was in order!!

So what exactly will be happening on Tuesday? We will be at Sick Kids bright and early, 6 am to be exact. She goes in at 8 and they say she'll be in surgery until 12. During this time, Dr. Zuker and his team will be placing two expanders in her scalp. They say to count on her being in the hospital for 3 days (last time they said the same thing and she stayed 2 days). Recovery shouldn't be too bad, just two incisions with 10 or so stitches each.

Then about 10 days or so later, we start going to Sick Kids every week to have those expanders filled. It'll have to be done slowly, as we are now dealing with stretching skin that is covered in hair. We need to be careful with the hair follicles, so they are not stretched too much. We need all that hair because once the expanders are large enough (2 or 3 months from now), they will remove what they can from the side of her scalp and place the stretched skin with the hair where the nevus was.

So basically, she is going to go through exactly what she had before, except this time the expanders will be on her head, whereas last time the expanders were on her forehead and cheek.

While we had thought we would just leave the nevus on her scalp (although large, covering most of the left side of her head, you can't really see it as it blends in with her dark hair), over time we have come to realize that there is a risk of her losing all her hair from her nevus in her twenties. Every time we waiver in our decision to go ahead with this removal, another adult joins the nevus support group that we belong to, and lo and behold, they've lost hair from their scalp nevus. Being a girl, we just can not let this risk go. And so that is why we are dealing with it now, rather than wait to see if it'll happen to her or not (because remember, it doesn't happen to all scalp nevi).

So how does Keziah feel about all this? Stay tuned......I'll post about this in a few days.

Thank you for reading! So many of  you have shown us support, it's been amazing. Your encouraging words but most especially your prayers have carried us through to this point. We ask that you continue to pray on our behalf, that God calms our fears and that we may rest in the knowledge that He has everything in His hands, including the well-being of our precious daughter.

The REAL Call

So today, we got a call from Sick Kids, this time with a "real" surgery date. I say 'real' because the last time we got a call, it was for 2 days later.

This time however, we have an actual surgery date set. It will be in November; November 19th to be exact. Her surgery is scheduled for 8 am. Dr. Zuker will be placing one or two expanders in her scalp, to expand the skin slowly over a number of months so that it can replace where the nevus will be taken off.

She will not know what's going on until the day before or so. So if you see us, please don't ask about it with her around.

The nerves are settling in quickly for us! But for now, we will continue to enjoy this happy, beautiful and smiley girl; we will also continue to work on leaving everything in God's hands.

We Got a Call!!!

So it's been well over a month since the last update of "waiting for a surgery date". These last number of weeks have gone by swiftly and we were granted the patience needed as we waited to hear back from Dr. Zuker. The last time we chatted with him, he told us he was still doing some research into the 'balding from the nevus', and told us it'll be some time before he gets back to us because of it being summer holidays.

We figured the next time we heard from him would be an email to let us know the results of his research, and we would go from there. So you can imagine the surprise we got when this past Wednesday we received a call from Sick Kids for a surgery date for 2 DAYS LATER!!! That's right. They had a cancellation on Friday and were wondering if we could have Keziah there by 7 in the morning to have her surgery of placing tissue expanders in her scalp.

I guess the call gives us the result of his research?!

My stomach hit the floor. Talk about no preparation at all, but that can be a good thing sometimes! Unfortunately we could not take up this opportunity as Nathan will be out of town a few days after surgery. I know others can do this without their partner, but I cannot. If we go by last time she had expanders placed in, she stayed overnight one night and then sent home. That would have been today. And Monday Nathan leaves. I just couldn't wrap my mind around this. So we said 'no'. :o(

It sure was weird yesterday though, thinking about it off and on, what "could have been" on that very day. But it was not to be. Sometimes I struggle with whether I made the right decision or not. If we start now, we could be done by Christmas!!! But it is what it is. They said they would call us again if there is a cancellation, or they would call us with an actual surgery date.

But that's what surprises us.....we don't even have an actual surgery date, yet we got a call for a cancellation date. Is that normal? So I guess we should be prepared that this surgery really can happen anytime from now.

I did send Dr. Zuker an email after the call, asking if he could give us the results of his research before we go ahead with surgery. We want to know what he has found out.

So we continue to sit tight, not knowing when all of this will take place. Sure is comforting to know we can rest in the knowledge that this is all in God's hands. And we continue to pray for wisdom as sudden decisions may need to be made.

As you can tell by her ketch-uppy smile, she has had no clue as to what could have transpired this past week. Ah, the life of a four year old, where the biggest decision to make is what to play with, Polly Pockets or Littlest Pet Shops. :o)

Still Waiting.....

Seeing as September is around the corner, many people have started to ask us again when her next surgery will be. The answer is: we still don't know. In May, when we saw Dr. Zuker last, he said we would get a call this summer for a surgery date in September and October. Summer is almost over (sniff, sniff!) and we have yet to receive that call.

In May, June and half of July, we hardly thought of the call, knowing it'll probably come late July or early August. And so the waiting wasn't too hard. Besides, we were busy enjoying the summer and all the activities that come with it (most of it being camping, as some of you may know if you read my other blog).

It wasn't until the third week of July that we started to think a bit more about it. It didn't help that we knew of another patient of his, who saw him on the same day in May as Keziah, received a call for surgery on the first day of October. We assumed by that, that our call was next. Yeah, that was a month ago now and still no call.

I emailed Dr. Zuker at the beginning of August and thankfully he responded last week. His response came the same the day that I had the phone in my hand to call his office. I just didn't dare though because I didn't want to be a nuisance. It's not like he isn't busy!! Well, later that day, I received an email from him. He told me he has talked to a few dermatologists and none of them, and neither has he, ever heard of this "hair loss" from the nevus. In his email he stated that he is still reading up on it and is still seeking to talk to some other experts. So I guess until he has researched it as best as he can, we won't be heading to the Operating Room any time soon. I guess he doesn't believe me that we have seen via pictures, as well as met someone who has experienced hair loss? Either way, I am just glad he is the type of surgeon that likes to look into things before going ahead with something he is not familiar with.

Knowing that she hasn't been forgotten and that he is still researching has made waiting easier again. But today I found myself in tears. Jealous tears. Tears that spring up out of envy for those who have started a similar journey before hers and are done; tears of impatience as we just want this journey to start again so that we are closer to the end. However, these tears are not healthy ones and are not beneficial to anyone. Because really, in the whole scheme of things, her journey is really not that long and definitely, most importantly, not life-threatening. I am just being impatient and want to be done!

So while we still yet wait, please pray for us, that we are more patient as we wait. We know everything is in God's timing, but it is just so hard to live that out. Having gone through infertility and adoption, you would think I'd be used to that....to trust and be rest assured that all things will come about when and if He wills. But once again, I find I am struggling with this. I just have to keep praying, because prayer always puts things back into the proper perspective.

It's really funny though, because on one hand I bemoan the fact that it is taking too long to get this show back on the road, and on the other hand I can't believe how fast time goes!! That's what happens when someone very special just celebrated her 4th birthday!

How did she go from this:

to this?!?! Seriously, where has the time gone?

That's right. Time does not go any slower or faster. It just seems like it does, depending on what our wants and our (what we think) needs are.

I will leave off with these verses that I am memorizing:

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. (Philippians 4: 6)

and

Can any one of you by worrying add a single hour to your life? (Matthew 6:27). 

Can't get more blunt than that, eh? Ah, God's Word and Truth. So reliable every.single.time.