Surgery #.....Who Knows?!

Another surgery is behind us.......and we do believe that this may very well be the last one until her head/face is done growing. Yay!!!

Today's surgery was a delicate yet minor one, especially compared to what she has all been through in the past 4 (!) years. When dealing with the eye area, it's always a bit tricky.

Getting ready for today actually started last night. We stocked her up on food after supper because we knew she would not be allowed to eat after midnight, and her surgery wasn't going to be until 3:30 the next afternoon! So she enjoyed a chocolate pudding, a snickerdoodle square, a cookie and a slice of bread with chocolate, all before she went to bed. I don't think she mind at all....do you?! :o)

 

 

And because she didn't have to wake up early, she got to stay up to watch her (and my!) favourite show on the Food Network: Chopped

Before she went to bed, she listened to a video message from her nevus friend who lives in England, Isabelle. Hi Isabelle!!! Thanks for the well wishes!!

 

Due to the "No food" rule, she was quite thrilled to have Ginger Ale for breakfast! Certainly something I didn't think I would *ever* say: go get a pop can from the fridge for breakfast. But alas, it was said this morning!

 

We dropped Lincoln off at his little preschool and then killed some time at Walmart and Value Village, where a KinderSuprise and a baggie of little toys ended up coming home with us

Before we knew it, it was time to go. So she quickly changed into her favourite shirt, one that reminds her of a very dear little boy who lost his life due to complications of his congenital melanocytic nevus which became cancerous. She met Christian 2 years ago and he and Christian's mom (Hi Tanya!!) are never far from her thoughts and prayers.

Once at the hospital, we found out that we were given the wrong time.....but it was good!! 'cause instead of her surgery happening at 3:30, they were ready for her at 2:30!!

Keziah was quite nervous this time, becoming very quiet and unsure. We could really tell she is getting older and knows exactly what's coming. But again, when it was time to go, off she went on her own. What a girl!!

 

 

Can you tell which file is hers?! Not sure why it's in the "E" block, but there it is - that big fat one.

While waiting, we met up with another nevus family - Hi Karen and Scott!! Their little girl was having a tissue expander placed. It was neat to meet and chat together for a bit. We pray that Alanna's recovery goes smoothly, as well as all her fills.

Around 4:30, Dr. Zuker and Dr. Wong came to let us know that all went well. They excised a tiny bit of nevus (it was a very thin line down the side of her eye), did a Z plasty on her scar on near the corner of her eye, and then also did a very deep "hook" stitch to lift up the droop of the corner of her eye. That deep stitch will hopefully hold in place for a very long time, preventing the corner of her eye from drooping.

After they left, the anesthesiologist came to have a talk with us......she threw him for a loop because she was co-operative and completely fine until the mask (to put her to sleep) came out. She absolutely freaked out. He ended up putting the tube of the sleeping "air" in between his fingers and then cupping her mouth and nose with his hands, which worked and calmed her down. But her freaking out really shook him up and bothered him. He was really concerned that she will now be fearful of coming back to the hospital, that this "event" will leave her with a very negative experience. We did reassure him that her freaking out was something she does - she did for every single fill when dealing with expanders, and yet 2 minutes after the fill, she was happy, and week after week, she was eager to go back to the hospital. This reassured him somewhat, but yeah, it really didn't sit well with him. Wow. What amazing, caring and compassionate professionals Toronto Sick Kids hire!! We knew she hated the mask.....next time I will give them a "head's up"......I just never did as I didn't want to say it in front of her, causing her to get all anxious. But I shall pull them aside next time (and doing an IV instead of the mask will also cause her to absolutely freak out, so that's not an option either)

Anyway, she woke up in recovery and about 1/2 an hour and two freezies later, she was wheeled out to the car to go home, hugging her bear that apparently also needed an eye lift :o)

 

Once home and settled she wanted a piece of jam toast.......

.....only for it to all come back up about 20 minutes later! She hasn't thrown up after a surgery since her very first surgery, so this was a bit of a surprise. We know it can happen, but it hasn't happened in 4 years, with lots of surgeries in between that first one and today's. Those eyes - such a sad look!!

She did give me this soft smile but then promptly threw up. Darling beautiful brave girl we have.

So as you can see by the pictures, not much change is obvious. We can see the "eye lift" and can tell the difference....but it is hard for others to notice right now. It'll swell up a bit but not too bad, with her hoping to go back to school in a few days.

The one thing they did not do was touch her scar on her scalp. It is quite wide again due to her head growing. The placement of this scar and the leftover nevus is there from that "failed" expander a couple of years ago. If that expander had worked, the scar would be in her hairline and there would not be any nevus behind her ear.

We will deal with that years from now when she is done growing....possibly with excisions or even doing hair transplants. For now, we will keep her hair long and do different hairstyles to cover it.

 

We will be back for a follow-up in a few weeks. Then the steri-strips will come off and the swelling will be down, and the work that was done today will be a wee bit more obvious.

We are thankful once again for the talents of Dr. Zuker and Dr. Wong. We are thankful for safe travels. We are thankful to my parents for taking this blue-eyed-full-of-life boy - he's talking on the phone with my dad, "So opa, when Keziah goes to the hospital, I am coming over to your house. We will wrestle first and then you can read me a book." :o)

And we are thankful for all of you, with your many thoughts and prayers!

"See" you in a few weeks once we have the follow-up!

Still Journeying.....

Why, hello there! It certainly has been awhile, eh? Like 7 months since my last blog post?! But what that tells you is that there really wasn't much to write about in the last months. While our journey with Keziah and her freckle is ongoing, there haven't been any appointments or changes to update you on. Really, the only change that has happened since I posted has been that this girl continues to grow, looking older and older as the days go by.

But today we had an appointment, one that was 2.5 years overdue. It was a visit to the dermatologist at Sick Kids. It being 3.5 years since we last saw the derm is actually not very wise on our part - 3.5 years since her last skin check up. Her freckle needs monitoring to be sure that there are no worry spots. Even though most of her large freckle has been removed, the whole area of where it was and is still needs to be monitored for melanoma. So she should be going in yearly.

So off we went to a 2:30 appointment. Keziah was pretty excited to go back to the hosptial, taking her new Bravery Bead Buddy with her. This stuffie was made for her by a high school class in Toronto. She was "nominated" by someone for one to be made for her, and Keziah loves it! All her bravery beads can be fed through the mouth and there is a window pocket for a stomach where you can see all the beads. She hasn't used it for that though - just for snuggling so far :)

We actually arrived 1.5 hours before our appointment (traffic was great!!) and we hunkered down, thinking we were in for a very, very long wait. However, before we could get too comfortable, we heard "Keziah?". Really?! They took us in early! Yay!

So in we went and they checked her all over. We have noticed over the last years or so that she is getting more freckles (also known as satellites). This is common with having a congenital melanocytic nevus. So every freckle was checked over and photographed.......all 66 of them!! Yes, she has 66+ freckles, not including her large one.

To hear the words "they seem to all be benign" really hits home the reality that there is still a risk for her for them to not be benign.....that melanoma is a real risk for her. When you live with it for so long and freckles are just a part of your life, you can forget the truth that there is a risk of melanoma with having a CMN and satellites.

But praise the Lord for the fact that right now, all her freckles are benign! We shall continue to be diligent when in the sun, using sun screen. She always has it on around her eye and you will often see her wearing a hat.

We were in the car and ready to go by the time our appointment was supposed to start!

But not before our regular stop at Tim Horton's. Someone has upgraded from Timbits to a whole donut! :)

And another appointment is already booked for a year from now.

On the surgery front, we just got a date for June 7th. It'll be a minor yet delicate surgery, as Dr. Zuker and Dr. Wong will deal with the droop and heavy eyelid. You can see what I mean in this picture below....

The redness of her scars continue to come and go. Her last surgery was just a year ago and they have come a long way in a year, and they will continue to fade as the years go by. We do still massage every day for 5+ minutes.

 Above is a year ago, below is from last week

Keziah continues to be a happy girl. Every once in awhile she bares her heart and her struggles with how her eye looks. Hearing your child say, "I hate how my eye looks. It just looks so weird" and "I don't like looking at my pictures or in a mirror" cuts through our hearts swifter than the sharpest blade. But her working through her "differences" is part of this journey of a nevus. She however tells us emphatically that she is so glad that most of it is removed and she does not want what's left in her eyebrow removed ("Or else I won't have any eyebrow and people will ask even more!!" is her reasoning). She just doesn't like the attention "looking different" gets. So we work through it together, continuing to pray for wisdom and courage.

Once June 7th is here, you'll be hearing from us more :o) Until then, take care and thank you for reading!