Fill #11

Another week done, another fill completed. But more importantly - today was THE LAST FILL for this round. Yay!!!! This is always so exciting, which is met with relief: yes, we made it! While there was a brief setback with having to take out the one back scalp expander, we are ever so thankful that things kept going well with the top expander.

And so this morning, back to Toronto we went for her last fill. It seems to us as well that every week we drove to Sick Kids since November 19th, God blessed us with His presence through the sunrise - a pink one almost every time.

Keziah has touched a lot of people's lives at the hospital, from the nurses, to the volunteers, to even the office administrators. Here she is with Ms. Valentina, the office administrator we see to check in and whose heart Keziah has captured.

Keziah doesn't always know how to accept all the love that is showered on her, but looks forward to making a visit to her every time, even making a picture for Ms. Valentina, which is hanging up in her office. Keziah is a princess in Ms. Valentina's eyes. It is a must that once the fill is done, we see her again so she can give Keziah  her bravery beads and a few extra special beads chosen especially by Ms. Valentina for Keziah. After today, we won't see Ms. Valentina every week anymore, and not until a post op visit a few months from now. That meant a big good-bye hug was needed!! No matter how busy she is, Ms. Valentina has time for Kez. It's people like that, that make this whole journey an easier one.

Today, Dr. Zuker was able to get in 40 more ccs, so here is the final tally:

And this is how Keziah feels about the fact that this was the last time:

We've told her what is coming in 5 nights sleeping and so far she is very okay with it. The next time we drive to Toronto will be on Tuesday, to be there for 6 in the morning. Yawn. But we are soooo looking forward to getting this surgery done. Dr. Zuker figures she'll be under for 4 hours or so. Her last removal took 7 hours, so 4 hours is definitely doable - waiting wise. He mentioned that he also would like to remove a bit from under her eye and all by her temple. You can see what he means in the picture above where she is looking to the side. But he said it all depends on how badly she swells from the big removal of her scalp. As for the eyebrow and the rest around her eye, he figures next year, which will give what is done now plenty of time to heal. It all has to be healed and settled before we touch the eye or else distortion becomes a great risk.

We have so much to be thankful to God for once again as we are in the home stretch:

• once again we were blessed with travelling mercies. As soon as we got home, whiteout conditions happened due to some very gusty winds and blowing snow. This has happened so often this winter - that it all happens either the day before, or once we are home, yet when we drive, the sky is as clear as can be
• Keziah has remained healthy, despite everyone in her family being sick. We pray this health remains for the next 5 days
• that despite not loving the fills and expressing this every time a fill was about to happen, this girl toughed it out every.single.time. My heart bursts with pride for this amazing brave little girl that we have been blessed with

• that her bubble is healthy, no leaking, breakage or infection
• for those who have looked after our little man, including my mom, who had him once again today

•  for the many who have kept us in their thoughts and prayers.

I will update next week with how everything is going as we prepare for surgery, go through surgery and recovery.

Thanks again for reading and commenting (either here or via email/facebook). I save every one of them for her book about this whole journey that she'll have for later in life, to show her how many people cared and prayed for her, which will in turn help her to see how much we can do for others. Thanks, again.

Fill #10

You may recall that last week, Keziah went to her Fill feeling a little under the weather. Not this time!!! You can't NOT see that sparkle in her eyes - almost looking somewhat mischievous!

We were excited to go today as we would see Dr. Zuker. We haven't seen him in almost a month (3 fills without him). He was quite pleased with her bubble and how well things looked. He was also able to get another 60 ccs in today, which has the left the bubble very tight right now. By Saturday, it won't be so tight anymore as the skin has stretched and grown.

And here are the results:

Dr. Zuker does want to do one more fill so we will be back next Thursday for the last fill. Keziah's excited she has only one more fill to go!

Today's gift was a candy frog and Olivia books.

And so we are nearing the end. Two weeks from now the surgery will hopefully have taken place, God willing. We are eager to have this all behind us. The larger the bubble gets, the more concerned we are with it popping. Her and her brother constantly play close together, which is a good thing, but that means they bonk heads. Right now it is so tight that it seems like all they need to do is horse around and oops, a knee or elbow bonks her head and there it pops! We find ourselves saying "Keziah, watch your bubble" as much as we say "Lincoln, out of the cupboards, it's not snack time." :o)

But we are having fun with her bubble, too. The other day, Keziah was standing in the sunlight, which made her bubble glow pink.

Keziah was absolutely thrilled with having a *pink* bubble. Yup, she's a girl through and through.

We praise God for keeping her healthy this last week. While she was very tired for a few days, last Thursday seemed to be her only off day. We pray for continued health for her as we near the end. I am down and out with it now, but I am glad for being sick this week which means I'll be healthy by the time she has surgery (hopefully).

Thanks for reading! "See" you next week!

Fill #9

The day after her fill last time, we packed up and headed to Ottawa until Wednesday (yesterday). It was fun to get away for a bit and we had a great time. Keziah enjoyed the swimming the most. Can you tell?!

Someone asked us before we left whether the water in her bubble would freeze if being out in the very cold. Ha! Never thought of that before! But no, it will not freeze. It is saline water and her body temperature keeps it from freezing.

We came back yesterday in time to go back to the hospital today for another fill. I noticed that when I woke her up, she was a bit peakish - looking pale. All the way to the hospital she complained of being cold. Oh-oh. We did still do a fill, hopefully that is okay. We came home and she went to bed and slept for 4 hours. But she is clearly not well, coughing, fever and sore throat. No surprise, seeing as her brother has been unwell now for a week. Hopefully she kicks this and it does not complicate anything.

Today's fill went very well again. Here she is with her present:

And here are the results of Fill #9:

Despite not feeling well, she can still pull out a beautiful smile:

My, oh my, that bubble is sure getting big! Even though we've been through this before, it still boggles our minds how that skin can stretch. Unbelievable. But it is looking good! We see Dr. Zuker next Thursday, first time in over 3 weeks, as he was gone to India. Next Thursday may be our last fill, but he may want to fit one more fill in there before surgery. There is definitely room as the bubble can be stretched to 680 ccs (and then some). We are 235 ccs away from that goal. But we are getting there!! Surgery is booked for March 4th.

And not to be forgotten, while taking pictures of Keziah, I hear "Me, too! Me, too!", and so I complied. I didn't think you would mind. Looking at it now, it almost looks like his mug shot! :o)

(I should have erased the numbers on the whiteboard and put these words: I am a big boy now! No more diapers!!!)

 

So yes, as you can see we are having our own Olympics here and two gold medals have been handed out so far:  one to a very brave girl, and one to a very big boy.

 

Please pray for Keziah's health, that having fevers etc. will not set her back. Please also thank the Lord with us for another fill day of safe travels to the hospital and back.

 

I hope you are all doing well and have a great week yet! Thanks for reading!!

Fill #8

When you have something scheduled weekly, it really is amazing how quickly time flies. It feels like just a few days ago that I had updated for Fill #7, and here we are, done another since.

We started this whole process back in November, and we wondered how it would actually go, not just complication-wise, but weather-wise. We were definitely counting on having to travel in snowy conditions at least once. But even though we've been having one storm after another, not once have we had to travel in it. The storm has either just happened the day before or is coming later that day. We are truly thankful to God for this.

So off we went this morning, knowing full well that thanks to the snowstorm yesterday, with people not being able to get to work, the roads would be that much busier today. It took us a full 2 hours to get there (it should only take 35-40 minutes). However, we are so thankful that the roads were clear and we arrived safely.

 She is always so patient, no matter how long it takes to get there.



Today went very well for Keziah. A tear or two, and that was it! And she was very excited to open up the gift she had been saving since the last fill up!

That's right. Princess Nail Polish for our princess!! She was absolutely thrilled! And sure enough, the first thing we did once Lincoln went to bed this afternoon, was paint her nails! You can hardly see the nail polish, but it's got *sparkles*, which means a lot to this little girl.

And here are the results of Fill #8:

(showing off her sparkly nails. Personally I think her eyes sparkle more.....:o)

 

Such a brave and happy girl!

 

She has one of the most smiley smiles, and her personality is so engaging (well, when she isn't tired....;). This is shown wherever she goes as she touches a lot of peoples' lives. Today, the Admittance office administrator (aka secretary), who we see every time we check in, gave Keziah a little surprise. She had one of the nurses make Keziah this beaded lizard. She just loves Keziah! It's people like her that makes these weekly trips enjoyable!!

 

We are thankful that we can see the end in sight, with 2 or 3 more fills to go before surgery. We are also so very thankful for Keziah's health so far this winter. While many have been struck by a flu bug or cold or something (including Nathan and I), Keziah has not had a single sickness. Yet. We pray that this continues in the home stretch. If she becomes sick, we cannot do a fill, which would be a setback. We are so close to being done! So please pray with us that she remains healthy.

 

Thanks again and have a great week!