Saturday, June 30, 2012

Too bad for you......

......that you'll have to wait till we get home before you see a picture of her. But if you were to look up the words "gorgeous, cute, beautiful, breathtaking" and "amazing", it'll give you an idea as to what she looks like :o)

Friday, June 29, 2012

Done!

We just met with Dr. Zuker, and she's done. Things went very well.....so well that he pretty much got all of it off her face!!! The birthmark is gone except for a part in her eyebrow. We haven't seen her yet. Believe it or not, we are nervous as we have never seen her face without her freckle. Her face with the freckle is all we know and now to think it is actually gone is something we are trying to process right now. It'll help once we get to see her. It feels like the first time we heard she was born and we just couldn't wait to meet her. It is a hard feeling to describe.

As He has been with us all through the day, so God will continue to be with us. Praise God for guiding the hands of the doctors and for making all things well. We also thank Him for all of you, as you have continued to pray for our family.

Time....

You know, time is such a funny concept. It either goes way too fast or way too slow. Right now, we are in the latter category. We haven't heard a word. The screen says she is still in surgery. I know, they did say till 3:30 (and could be longer), but boy these minutes are ticking by ever so slooooooowwwwwly. We are doing our best not to think about exactly what they are doing to her face, and so we are trying to keep busy. Here's hoping we can see her soon!!!

She's in!!

Keziah is now in surgery. They used that calming medicine again so she wouldn't have a problem leaving us. This time it took quite awhile for it to kick in, but we knew we were getting close when she said "Dad, I feel high!!", lifting her arms up into the air! Oh, what a girl :o)

And now we hang tight until 3:30 or so. Thanks again for all your messages we have received!! We read each and everyone of them, feeling so much support.

Thursday, June 28, 2012

Surgery Tomorrow!!!

Tomorrow is the Big Day! While most people we are talking to are gearing up for a camping-filled Long Weekend, we are also packing a suitcase. But no roasted marshmellows for us! All those trips since the beginning of April have been leading up for what's coming tomorrow. The doctors are pleased with how well the skin has stretched as well as how healthy it looks. That means it is now time to work with what they've done to that skin. And that also means that we might not be able to go camping this weekend, but if all heals well, we can go in August (which, at the beginning of this process, we thought she would be having surgery; so much to be thankful for!).

Here are some details about the surgery:

We will need to be at the hospital by 7 in the morning. Surgery itself will begin around 9 and she will be in surgery for 6-6.5 hours. Gulp. That is a long time!! It could end earlier like last time but we will have to wait and see. Once surgery is done, she'll be in recovery for a bit and then off to Ward 8C for four days.

In those 6 hours, they plan on taking out the expanders, which will leave excessive skin. They then plan on cutting off the birthmark from her cheek up to her ear and eye area. Using the stretched skin from her cheek, they will be pulling that skin up to replace what they just took off. For her forehead, they will be cutting off the birthmark up to the middle of her eyebrow or so and then use the stretched skin to cover the part they took off. That will leave some of her birthmark still on to the left of her forehead as well as over her temple area. Because they know this is just the first phase, they don't want to be too aggressive with pulling the forehead skin over as that could very well move her right eyebrow with it. We will be dealing with what's left on her face in 6 months with another forehead tissue expander.

So all said and done, she will be left with quite the incisions. We are trading in the birthmark for scars. I know this sounds bizarre, but we are anxious as to how these scars will look for her. We know the birthmark is noticeable yet that is what we are used to. Scars we are not. It's the unknown.

We are nervous. We are trying hard not to be scared. We are doing our best not to worry about the outcome. On Sunday, our minister prayed for Keziah and that all may go well as she gets a "new face". That took our breath away! But he is right. She WILL be getting a new face (somewhat). And so we are excited as well! We miss her bubble-less face! We are eager to see how much they will be able to take off and to see her new look.

We know you are praying for us and that is comforting! We ask that you pray for the doctors, that their hands may be guided in this delicate surgery that there may not be any nerve damage to her face. We worry so much about face distortion (either with the right eyebrow or with a drooping left eye) and so we ask that if it is God's will, none of this may occur. Please pray for her recovery, that it may go a bit smoother for her than last time (she had a rough time when she came out of surgery), and that no infection will set in. And one last thing, please pray for strength for us. We will need the strength already tonight when we have to drop Lincoln off and possibly not see him until next week. Leaving him is so tough. He is in good hands though and will be thoroughly entertained by Doug and Karen and their brood.

I will post tomorrow (and the days following) to let you know how things are going, when she is out, which room we are in, when we can go home etc. etc. Nathan now also has the iPad2 which comes with a camera and so if I can figure how that all works, the posts may even have a few pictures. If not, you'll just have to bear with "picture-less" posts for a few days and then pictures will surely follow once we are home.

On behalf of Keziah, we all say "THANKS for remembering us in thought and prayer!"

Tuesday, June 26, 2012

Observations and Reflections

Remember this darling face?


Would you believe that she has the expanders in her face already??! And would you believe that after Fill #1 I wrote in that post that her face is changing so much?! Now when I look back to those earlier fills, I find it almost laughable as to how I was having a hard time adjusting to those changes. When I see those earlier pictures, I can't believe that I thought her face was already somewhat distorted. Compared to today, those fill ups were nothing! I know, it's all perspective and at the time, the expanders looked "big" already. But we sure are looking forward to this Friday, having those expanders taken out!

Let's recap for a minute. I'll post a picture from each fill so you can see the progression. I wonder if you scroll down really fast you can see the cheek and forehead "grow", just like those creative artists in school who would draw a stick figure at the top of the first page in a textbook and keep drawing one on every page until the end, and if you flip the pages fast enough, it would look like the stick figure was moving! You'll have to try and let me know :o)

Fill 1:

Fill 2:

Fill 3:

Fill #4:

Fill #5:

(her cheek from behind):

Fill #6:

Fill #7:

Fill #8:

Fill #9:


Although her cheek and forehead have changed a lot, that smile and brown eyes sure haven't! She is still as spunky as ever, which surprises many people when they see her hopping and skipping around. It looks painful but overall, it really has not bothered her much at all.

Although her face is pretty unbalanced right now, we did and continue to take her out in public. There were great times and horrible times. There were times when I had to really cool the blood that was boiling in my veins as I saw children running from her at the playground. Wherever she went, they ran away, yelling "don't go near us!". Another time I had to cool my jets was in Ottawa, when a boy went right up to Keziah, pointed in her face and said "Ewwwww! What is THAT on your face??" The "ewwwww" is what made me blow smoke out of my ears. Although we are so thankful she is too young really to know that those reactions are directed at her, it sure is gut-wrenching to see her confusion on her face when all she wants to do is play with them.


And so, as in any trial you go through, we have learned a lot. We have learned that for the most part, people are filled with empathy for her. They cringe when they see her but not out of disgust, but because it looks so painful. Once they know it is not painful, they are relieved and can see beyond it. Just last week we passed a 12 year old boy and when he saw her, he right away gasped and put his hand to his mouth. He then closed his mouth and puffed out his one cheek as far as he could, touching it with his hand. It looked quite funny!! But by his body language I could tell he was full of emapthy for her.

We have also learned that it is so important to teach Keziah that not everyone looks the same and THAT IS OKAY. And I am not only talking about "abnormalities". I am talking here about race as well. Because we live in such a close-knit somewhat Dutch community, to see another race in our circles is not overly common. How important it is to expose our children to all races in a christian way, that God created them just as much as He wanted to create us.

So how can I prevent her from pointing out others? From reacting as others have reacted to her? I don't have all the answers, and with kids, you just never know what's going to be uttered from their so brutally honest lips. But we can definitely help them by exposing them to things. With the use of the internet (carefully) we can show them different disabilities. I mean, there's plenty out there seeing as we all have one or more disability.

We can also use books from the library. Take out books that deal with certain disabilities (wheelchair, hearing aid, blind etc. etc.) as well as books that have characters of different races. And don't just read the book to them. Discuss. Discuss the differences; come up with examples in your child's life (peers, family members etc); discuss how we should treat everyone as we are called to by God. Talk about how to question properly in front of someone; help them to discern when it is a good time to question or to just leave the question until you get to the car/home.

Using the Bible is a great source as well. How often does Jesus not show that the blind, lame and diseased were worthy of His time and healing?!

Again, even having done all this, knowing kids, you will still find yourself in an embarrassing predicament. All I can say is watch your reaction; how you treat the situation will speak volumes to your children. We can show them by OUR reactions when we come across people that may look a bit "different". I know it's instinct to shush up our kids when they loudly proclaim a difference on someone or question "what is that?". But that makes the situation even more awkward!

I know Keziah will see things that are "different" and she may very well point and/or say something. But I pray for wisdom that I may show to her that everyone was created by God and everyone has a purpose here on earth, no matter their ability. With Christ as our example, may we all work on our acceptance of others and stop striving for outward perfection, but for a heart filled with compassion, kindness, caring and love to ALL.

Friday, June 22, 2012

No More!!

Although we will still be making a trip or two back to Toronto next week and the weeks following for follow-up, we are happy to put these weekly fill-up trips behind us (until 6 months from now when we get to do it all again).

Below are some things we will not miss from these trips:

Battling traffic (I don't know how people do this every day).


Taking in smells that are rather unpleasant (sorry, pig farmers!). I know I wouldn't mind if they were already turned into bacon :o)



No more fights with her to put on the lotion and saran wrap. Don't let the picture fool you. She looks all happy here, but a few minutes earlier she was doing everything she could to push my hand away.


We can now listen to radio stations other than traffic ones:


And no more dishing out $16 (or if we are lucky, $15) for parking every time.


Having said all this though, we have much to be thankful for. Each and every drive, we arrived at our destinations safely. Although there were accidents that we saw, we were never in a situation that made it take longer than 2 hours. Driving safely can so easily be taken for granted because we spend a lot of time on the roads. We praise God for granting traveling mercies these past months.

Not to do with the trips, but there is another thing we won't have to worry about and that is finding shirts that will fit over her head with the expanders!


There is however one other "no more" that actually makes us sad, not happy. And that is, we no longer will be working with Dr. Tom. You see, Dr. Tom Sitzman came here a year ago from the States to work alongside Dr. Zucker. It was just a one year stint. That year is up! This past Wednesday was the last time we will see him! He is headed back home (Cincinnati) next week and so he will not be there to see the end result of his work next week when Kez has her surgery.

Dr. Tom was amazing!!! He did most of the fill ups with Kez. He took the time to interact with her, as well as answer any of our questions. He is full of empathy, compassion and care.



We thank Dr. Tom for all his work with us and Keziah, and pray that God will continue to bless him in his work down at the Children's Hospital in Cincinnati.

Thursday, June 21, 2012

Fill #9

We are done! We are done! We are done!!!! I know many of you are chanting the same thing but for different reasons: it's near the end of June so that means school is either done or almost done! For us it is that yesterday was Keziah's last fill up and now we hang tight until next week Friday, June 29th, where she will have parts of her birth mark removed and the stretched skin will be pulled over to where the birth mark was taken off.

Even though Keziah did not enjoy many of the 9 fill ups, each and every week she was excited to go back to the hospital. And not only was the hospital exciting for her, the actual drive was! When we sat, trying hard not to complain about the traffic, she would point out the same things every Wednesday. These were the following things that she would point out in glee:

She was VERY impressed with how many "tvs" we passed (billboards), but the one with the baby cheetah was her favourite!


The GO trains that were heading back out of Toronto, which meant they were going backwards! That produced lots of laughs from her!


"Look mom! There are the swings!" (pedestrian bridge :o)


The wind turbine:


The "big tower that reaches up to the sky"!


And lastly, seeing the Parking sign meant a very excited girl! "Go down the hill and around the corner, dad!!" (into the parking garage).


By this time, we were excited to see the sign, too! That meant we made it after an hour and a half of driving. Going home it only takes 35-40 minutes. What a difference!

At the hospital, many volunteers contributed to Keziah's happiness.


And of course, Shaindy and her bag full of fun things were there waiting for Kez.



Again during the actual procedure, Keziah kicked and cried. It was almost comical because at one point she stopped crying and then about 15 seconds later started yelling "Ow!!! That hurts!! Stop touching me!" and Doctor Tom was still by the counter getting things ready :o)

Only the forehead expander was filled, with 25 more cc's. If I did it right (I did only teach Kindergarten so adding so many numbers wasn't a top priority in Math :o) the total saline in the expanders is 215 cc's in the forehead and 135 cc's in the cheek.

And here she is, at the end of her fill up:





I'd say they are big enough, no? :o) So is that smile, but I'll never tire of that!

Tuesday, June 19, 2012

Ottawa....Here we Come!!!

The following post is a bit long, so grab yourself a coffee and enjoy!

Nathan had a two day conference in Ottawa last week. When he heard about it, he asked if we wanted to come with him and make it a bit of a holiday. I told him I was interested but only if he could find us a suite, meaning, a kitchen, so I didn't have to drag the kids out by myself every breakfast and lunch. He found one and booked a suite at the Minto Suites. It was fantastic!!

We figured we would leave after our trip to the hospital, seeing as we would be done a big chunk of traveling, not distance-wise, but definitely traffic-wise. And so we went. We made a brief stop for lunch and then arrived in Ottawa by 4ish. We almost had to cancel our trip after our lunch though because of this:

No, not because of food poisoning but because of expenses!! I didn't see the price of the sandwich until after it was toasted and wrapped up for me. Gulp! Let me tell you, I ate every bit of this $10.29 dried out sandwich and licked the wrapper clean! I knew any crumb I left represented a dollar and would be like throwing money in the garbage! So heads up if you plan on stopping at any OnRoute places along the 401 corridor. I suggest you take a out a loan.

Once at the hotel, we settled in and made ourselves at home. I knew the room would have carpet and so I gave Keziah some princess shoes to wear (our house has a lot of tile. I can only handle so much clack, clack, clack!!). Keziah LOVED them and had fun wearing them, as well as trying to put them on daddy's foot. No Cinderella here!! :o)



Slaving away in the kitchen...


....as my family waits patiently for supper (I thought cheese would be good enough but apparently not :o)


'scuse me? When did YOU get so grown-up looking??!


We were on the 21st floor and so we had a fantastic view! "Mom, the people look like ants!!"


We had fun one morning watching these two guys climb up the building beside us and hang a huge Canada flag.



So while Nathan was at the conference, we passed the time away in our new "home", playing, swimming in the indoor pool and walking to a nearby park. I took this jumperoo thingee for Lincoln and he loved it!



He also loved the clicker for the TV. I've said it before, but I'll say it again: I think once this guy figures out how to crawl, we are in t.r.o.u.b.l.e. Look at that mischievous glint in his eyes!!


We celebrated Father's Day a day early. Keziah found the card and ran to give it to her dad! I hadn't even had a chance to write in it yet! Oh well, Nathan was thrilled and so was Kez!


On Saturday, we spent some time at the Agricultural Farm. Keziah had a great time, being only afraid of the cows. She petted everything else and was even brave enough to pet the "statue" cow :o)



Oreo, the rabbit!


Tractor and combine fun! Fun for dad that is. Kez wasn't too keen on the first one as it made a lot of noise.



Back to the animals. Keziah loves anything to do with "babies" and so she couldn't wait to see the baby calves!


Just can't stamp the "farmer" out of him! (yes, there were stations to wash your hands other than in calves' mouths :o)


Lincoln was a bit young to enjoy the sights and sounds of the animals, but he had a good time anyway, sucking on his fingers.


"See? I am brave!!"


There was a great park here as well, which Keziah and Lincoln enjoyed! I sure had to keep on eye on this boy or else most of the sand would have gone in his mouth! Wouldn't hurt, I guess. Give the digestive system a good clean-out.



This child's smile is so infectious!


The weather was so nice we also hit a beach on the Ottawa River.





My parents had rented a boat on the Rideau Canal and so we met up with them one afternoon. We enjoyed the boat ride through a couple of locks. I think this was the first boat ride ever in my life that my dad's boat didn't break down!! :o)




Lincoln, relaxing and snoozing to the sway of the boat. He'd make a good "Moses":







The little wading pool where they had docked their boat:


Her expanders keeping her afloat!! Kidding! (but I wonder...Don't worry, I am not going to try :o)


And that brings us to Monday, the day we headed home. After we got these monkeys up


we packed up and left our little home. I think what Keziah will miss the most are the rides we had to take in the "elegator".

We had a great time (as long as we don't focus on peoples' reactions as we continue to take her out in public...a post for another day) and are thankful for this time we could spend together.