Fill #7

Another fill done and over. Seven already behind us. That feels great! We have 3 or 4 more to go. I say 3 or 4 because I am not sure if we will be doing a 4th fill as it may be too close to actual surgery date. Her surgery for removal is March 4th. Another month of fills, but it's a short month! Yay!!

We are noticing the days are getting longer. When she had her first fills back in early December, we would leave in the dark. Now we get to see the sunrise, which is always breathtaking and beautiful.

But it's still early and this girl is thankful for her thumb and blanket, which is ALWAYS on her head.

No pictures of the actual fill up today or of her unwrapping her present. While the present idea worked perfectly last week, this week not so much. That's the thing when they are older - you can't pull a fast one over them so quickly anymore. She knew very much that we were trying to distract her an why. I had two presents for her, and she got through the first one in tears. But at least she didn't scream or kick, just cried.

She was not interested in opening up her other present. She told me to save it for next time :o) So while she still doesn't like the fill, she is brave and accepting in the fact that there obviously is going to be a "next time" and that she wants to save that present for then. However, this does leave me wondering if the bubble is starting to affect her thinking. I mean, what kid has enough self control to not want to rip open a present??! Crazy girl :o)

Here are the results of her fill:

 Trying to see her bubble :o)

From the sides:

And her gifts. The book is from the hospital, and the gift she unwrapped from us a Pez Dispenser. You'll have to wait until next week to see what the second present was....;o)

So as you can see, her hair is really thinning. Well, it's being stretched. I am trying hard not to worry about how much scalp skin we can see, however it is hard. I worry that that is how thin it'll always be, even if without the bubble. However, once again after expressing my concerns, I was reminded by our support group that you just have to wait until the end, to wait until not just the removal has taken place, but also to wait until a few weeks after removal before you can really see the results.

I re-did her hair to see if it'd make a difference. A little bit, but not much. I am just going to have to be patient and not have visions of less than favourable results. Besides, instead of focussing on the thinning hair, focus on those deep brown eyes she has. She has told me that the reason why she has dark eyes is so that she can see in the dark. Ah, how I love this girl and continue to thank God each and everyday for blessing us with her.

Have a great week! We'll "see" you next week and thanks for stopping by.

Fill #6 - And a Breakthrough!!!!

Hello to you!!

This morning we were back at Sick Kids for another fill. Keziah was again excited to go, waking up early, saying,
"It's okay that I am up already, right mom? Because we are going to the hostible today."

 When we got there, we had lots of time, so daddy got to enjoy a treat: a Starbucks coffee. The girl behind the counter saw Keziah and gave her this as a treat:

Nothing like a sugar high before 9 in the morning! No wonder she likes going to the hospital every time ;o)

We didn't have to wait too long to see Dr. Zuker, but long enough to build towers together.

Here she is waiting patiently to give Dr. Zuker her latest picture for him. I do believe this man's front of his fridge is getting fuller than mine. Unless he does what I do with some of her creations.....;o)

As you know, Keziah does not enjoy her fills. At all. It's not that it hurts; when I asked her last time what she doesn't like about it, she told me she can feel the water go into her bubble and it is cold and that is what she doesn't like. I never thought of that, but it must be such a weird sensation!

To distract her the last number of fills, we have used child life specialists, bubbles, watching Franklin on the iPad, games, etc. Nothing worked, much to everyone's frustrations. Kicking, screaming, crying was the name of the game.

However, there was one thing that we never tried. Not sure why I didn't think of it sooner, seeing as I had read others from our support group doing this. Well, today we tried it. And let me tell you, today's fill was the BEST FILL EVER!!! Not a single tear, flinch, blood-curling scream; no kicking, sweating and squirming. And that, my friends, is what we call a break-through!!

So what worked?

I wrapped up a little present really well, and had her unwrap it during the fill.

And it was the best distraction for her!! While she unwrapped her little present, Dr. Zuker filled her bubble. She was just absolutely thrilled with her new pair of socks, a necklace with a puppy on it, and butterfly candy.

And we were thrilled with how well this fill went. Now why didn't I think of this like, 17 fills ago?!?!?!!

Things went so well, that Dr. Zuker was able to put in 60 cc's! 20 more than usual. So here are the results:

Someone is trying to look all angelic-like. It's a bubble, honey, not a halo on your head :o)

Our beautiful, smiley and very brave girl, who loves her new necklace!

We are SO thankful we may have found a way to get the rest of her fills done without too much more drama.

 

And so the bubble continues to grow. We have about 4-5 more fills to go before removal. We pray that it will continue to go well. Keziah has just figured out that when she moves her head quickly, she can feel the water swish around in her bubble. I don't know if I find that gross or fascinating. I had heard about that before from another nevus mom. I'll let you know if I can actually hear it....once I dare to get close enough without getting squeamish from the sound. :o) I know, it's just water, but it's the idea....

 

At this time, we would also like to pray for Dr. Zuker, who will be travelling to India and will be there for the next 3 weeks, putting smiles on children's faces as he works with Operation Smile. What a blessing he is to so many people!

Fill #5

Another fill down - yahoo!

I woke Keziah up this morning, telling her where we were going to go. She got up and said "I want to look pretty to go to the hospital."  Ah, honey. You are pretty everyday due to your kind and thoughtful personality.

But anyway, she chose her outfit, and insisted that her socks needed to be over her leggings, pulled up to her knees. :o)

Dr. Zuker was not there again this week, and so he had organized another surgeon and nurse to do the fill. Here she is waiting patiently with Meow-Meow and her stuffed pup, Blanchie.

Doing the actual fill is still not one of Keziah's favourite things in the world, but yeah, she gets through it. She does become extremely hot due to anxiety and being worked up, sweating by the time the fill is done, so while she picked out her outfit, it clearly was the wrong outfit to be in. Next time we are going in shorts and a t-shirt :o)

A sprinkle donut is in order! And it didn't stand a chance in her hands!

The ever big helper, helping daddy pay for parking - $20 whether you are there for 5 minutes or 650 minutes.

It had been awhile since daddy has driven to the hospital, and so he kind of forgot what to expect in regards to traffic. It was all worth it for him though once he saw this vehicle. Apparently it is not a common one, due to the expenses - a couple hundred grand? It's a V12, 567 hp, Bentley something or another (not sure if any men are reading this.....but there you go. Something to drool over :o).

And here are the results of today's fill:

Yup. No denying it - it's there!! We are at 245 ccs now, 10 ccs larger than her biggest one last time around. This is Keziah's thoughts on how much more we have to go!

 (the above picture is before this last fill. The one below is after.)

While the fill is difficult for her, this girl just keeps on smiling her way through life. We are so proud of her! She has yet to say she doesn't want to go to the 'hostible'. Every week again, she goes eagerly. We are so thankful for that!

Speaking of thanks, we continue to be blessed with good health this winter - the healthiest yet! This is something that gives us much gratitude, for if she comes down with a cold/flu/fever or whatever, we have to skip a fill. So far so good!! And for the first time yet this round, since the expander(s) has been placed in, there is no blood on the incision after a fill. Yay!!! It has been a worry the last weeks that we might lose the top expander as well as the top incision just was not sealing up. But it is looking like it has now.

 We are also thankful for people who continue to step up to help us out, whether that is to take him

or in making us a meal, a meal so large enough it'll be good for 4 suppers!!

Thank YOU also for your continued support!! Until next time, have a good week and take care!

Fill #4

It's been a nice two week break from hospital visits, especially after having to make a number of unexpected visits, but off we went early this morning. Early as in leaving by 5:30. Yawn.

Nathan was unfortunately not able to come with us due to being out of town (actually, he was in Toronto for a landscape show. Yup, same city as Sick Kids. However, Toronto is BIG and he had commitments that he could not get out of).

So instead of Keziah's dad coming with us, my dad did :o). And who needs a Child Life Specialist when he comes with?!

I found something out about my dad that I never knew: he can colour. I always knew he was one of the best doodlers out there, but I don't think I have ever seen my dad colour. And I am sure if my siblings are reading this, they have fallen off their chairs. Dad? Colour?! He can actually sit still long enough to colour??!?! If you know my dad, you will know this would be a very hard thing to believe. You need proof, don't you. Yeah, I would too. So here it is:

And yes, he actually sat long enough to complete the task! Again, we are talking about the guy who sits long enough to gulp down a tea and then he is off again. I am sure if his teachers could see this, they would look up in the sky to see if pigs are flying :o)

Before Keziah went in, she had her vitals taken, including her blood pressure. In the first picture below, the nurse was telling Keziah that she was checking to see how strong she was, guessing that she was probably very strong. Keziah promptly told her that only God is the strongest. :o) Out of the mouth of babes.

We found out about 1/2 an hour later that we would not be seeing Dr. Zuker due to the fact that he is still stuck in Florida because of the backlog of flights, thanks to the weather. Thankfully Dr. Zuker called another surgeon last night and told him all about Keziah and so they were ready for her.

Keziah went in and was put out with just laughing gas. The anesthesiologist said he used so little it would not even put an adult to sleep. Not even 10 minutes later, the drain was out (yahoo!!!) and another 40 ccs were added to her top bubble.

Keziah woke up very quickly, stating that she didn't sleep long enough :o) She was quite happy as she came to.

 She asked if she could listen to her heart. She quite liked that!

The nurses are just so fantastic! Keziah loves them all!!

Things went so quickly at the hospital that we could leave nice and early. So early in fact that we couldn't even make left hand turns due to the city stoplight rules (no left hand turns between 6:30-9:30). That, my friends, is amazing!! I don't thing we've ever been in and out of there so quick!

We came back home to this cheesy blue-eyed monkey (thanks, mom, for being here nice and early to look after him!)

And so, here are the results of her fill:

 (no drain in the above picture!!)

Her bubble isn't too noticeable but it does depend on the lighting and how her hair falls. Below, you will see that the bubble is definitely there. However, still not too bad. But remember, this is 205 ccs. We have 475 ccs to go yet.

So proud of her! She likes her bubble but she told me tonight she is worried that her cousin will think she is now 5 because she is getting tall quickly. She does not like to be 5. Not sure exactly why but if I think of her very particular personality, it makes sense. She is 4 and never pretends otherwise because that just isn't right in her eyes. :o)

Thanks again for reading!!