Fill #6

After last week's fill, Keziah had a hard time opening her mouth up wide for food. Much to her delight, she had something that she absolutely loves! Shakes!! Thankfully after a few days, her mouth felt better so she could enjoy a summer favourite of hers.

A sure sign of summer....watermelon juice dripping everywhere!

On Tuesdays, we not only spend time preparing her for what's coming the next day, she also gets to pack up her froggie backpack with whatever will fit in there. Yup! It's full!

This time she filled it with books, her bravery beads, a shell, a dog from Kate, Patches and her blanket.

Despite it being quite the event every week, she is always VERY excited to go back to the "hosible". We are so thankful for this!

So on our way we went again. Even before we got to the highway, though, somebody, ahem, committed a safety traffic infraction. Did you know that going 83 km/hr in a 60 zone is speeding??! Who knew?! And so we prepared ourselves for sitting on the side of the road for awhile. The policeman had other plans. As soon as he heard where we were going, he gave back the license and said "Have a good day, sir, and please keep our roads safe." (now you know it wasn't ME driving! :o)

At the hospital, Shaindy was there again, with a bag full of tricks. Keziah LOVES these little wind-up toy thingees.

Keziah was introduced to Herman this week! Herman likes to eat bubbles!!

Everything went very well beforehand. And then, the doctor walked in. Yeah. Not so well anymore. Keziah had an absolute fit. I am so not used to hearing her scream and cry like that. I am so thankful for thinking ahead by putting Kleenexes in my pocket. It is so hard. It took Nathan and I, Shaindy and another doctor to hold her still. It's not that it hurts her, it's the "holding still" part that freaks her out. But we have to hold her tight or else she'll rip the needles out, like she tried the few times I loosened my grip.

It is hard, especially because we worked on preparing her for everything the days leading up to Wednesdays. It is hard not to think "what did I not go over with her?" or "are we not preparing her enough?". When she flips out like that, I have to fight the urge to think that I failed her in some way by not helping her in her anxiety. We are so thankful for Shaindy who, through working with Kez, makes us feel that it is not up to us to distract her during the procedures. It just relieves the pressure off of us in that way so we can concentrate on comforting her.

Once the procedures were over, with 17 cc's in the cheek and another 30 in the forehead, Keziah was excited to get some chocolate milk. Good thing Daddy went to buy it because Mommy sure wouldn't think to buy something like this!!!

The poor gingerbread man didn't stand a chance in her hands!

(see her cheek is quite red? And if she is sitting in the light, the cheek and forehead actually look like they are "glowing". Light travels through them! I know, pretty freaky yet cool all in one.)

So here are the results after 6 fills:

Our brave little trooper! We are so proud of her!

Our next fill-up will be on Monday, June 4th, where they will leave the cheek alone and just fill up the forehead. The cheek will need about one more fill, but the forehead can stretch yet quite a bit more. Surgery is booked for Friday, June 29th. So we DO get to go away for the long weekend.....just not your typical long weekend getaway :o)

We know so many of you are praying for us and we are thankful. We ask that you pray for us, her parents, that we may be strong for her during the procedures. They are so exhausting. We also ask that you would pray for Kez, that she may still remain excited to go to the hospital and that her anxiety level will not go any higher than it is during the procedures (not sure if it can get any higher, but I'd rather not find out). Thank you all for remembering us!! We hope this blog is doing what it's supposed to be doing, keeping you informed and updated. Thank you for reading it!

Awkward

Last night, after dinner, Keziah and I went out to run some errands. We went to Costco to pick up a few things. HA! If that sentence isn't an oxymoron, I'm not sure what would be! "to pick up a few things at Costco." Yeah, like that every happens :o)

While there, a situation arose which left me feeling very awkward. I was walking down the aisle with Kez in the cart. We turned the corner and there was a father, mother and an 8 year old girl (or around 8). She saw Keziah and pointed to her, asking her father "what is wrong with that girl's face?". The father then absolutely reemed her out, yelling at her to NEVER point at someone and that he NEVER wants to see her do that again. And I mean, he yelled at her.

I stood there, not knowing what to do. Part of me wanted to thank the father for making his daughter aware of her actions, yet I wanted to tell him that he didn't have to yell at her because she really was asking out of curiosity, not with a tone of indifference. I also wanted to take that little girl's hand, bring her to Kez and explain what was going on so that her questions were answered. I felt so bad for her, being laid into like that.

They started walking by and I waited to see if I could catch any of their eye, to smile to them to relax the situation. The father refused to look at me and stared sternly ahead, while the daughter gripped onto her mother's hand, walking behind him.

I am sure that girl will never forget this. I just wish it could have played out differently.

As for MY girl and her reaction? She just watched what was going on but I don't think she realized it was about her. As I started to push the cart, we continued on with our little game that we were playing before, her grabbing my arm while I am trying to push the cart, saying, "Mom, do you know that I love you?" This is when I am SOOO glad we are doing these procedures now and not when she is older.

(these pictures were from a few "fills" ago).

Fill #5 and some GOOD NEWS!!!

"Mom, don't you see the big tower?"

"Uhhh, no, honey. We just turned out of the driveway. We first have to get through this:

and go through this."

And, oh dear. Although we looked for the big tower, all we saw was this:

But she was still happy to see a part of it!

All smiles after the lotion and saran wrap. What a difference from last week already!

Thankfully, Shaindy wasn't needed in any emergencies and so she was there to help us. Although Keziah did still cry a bit, it wasn't NEAR as much as last week. No kicking. No screaming. Shaindy and the distractions she brought with were so helpful!! Some of these distratctions were bubbles!!!

And the Ipad, where she could watch and listen to different songs. Meanwhile, Doctor Tom was able to fill both expanders another 30 cc's.

Dr. Zucker is back from India, where they were able to do many successful operations on children with cleft lip/palates. That is him holding Kez's head:

So the actual procedures went fairly well as her anxiety level did not go near as high as last week's. We are thankful for this. The pain level, however, was quite a bit higher and this became noticeable already before we left the hospital. Keziah started to cry because of her cheek, becoming so upset she started to gag. By that time Shaindy and the doctors were gone already and we were just booking the appointments for June. She had no interest in Timbits, picking out her bravery beads or anything. So we just left. She cried hard for a good chunk of the ride home, leaving her exhausted. She finally fell asleep despite her hiccupping. My poor girl :o(

Her cheek is definitely getting heavy, so heavy that she felt she needed to hold it while eating her blueberries :o)

Once she felt better, she was up to making a picture for Oma....

...for coming to our place to take care of this little guy!

But I wrote in the title "GOOD NEWS" and I wasn't referring to how well the procedures went. I am referring to the fact that Dr. Zucker is very pleased with how things are looking, to the point that we are talking of bumping the surgery up!! As you can see by the picture below, her cheek is quite expanded, and will only need one or two more fills! Yay!! The forehead one needs a few more. So he is talking about doing the surgery late June, rather than late July/beginning of August! Not just good news, but great news!!! So it's been tentatively set for June 28th or 29th.

We are thrilled! Too bad Keziah is too young to understand that it's only for another month or so. As you can see, she's looking pretty drained.

Once the surgery is completed, she'll heal for 6 months and then we get to do it all over again, except we won't be doing a cheek expander, just a forehead one. Because the birthmark is so large, they won't be able to get it all off in one shot. So if all heals well, another expander will be put in where some of the birthmark was taken off, to be stretched to get the rest off by her temple area.

But we'll worry about that in 6 months. For now, we praise God for blessing the procedures without any complications thus far. Thank you for all your prayers!!

Gearing Up!

The weekend has passed and wow, what a weekend it was! Just the weather in itself made it feel like it was the July or August long weekend! We had a great weekend, visiting our relatives, I mean, the zoo in Brantford on Saturday. It was actually quite hot, so the highlights were the little animal show and all the plastic Little Tykes play equipment rather than the tigers and lions who were too hot and sleepy. Oh well, there's always next time! Keziah went with some of her cousins and had a good time!

This is about as close as she would get to feed the goat. She was brave enough to pet it though.

At the little animal show, she was much braver and had fun petting a snake:

a lizard:

and an alligator:

These little furry creatures were cute but too young to pet:

Keziah had a great time keeping up with her cousin, Conall.

On Monday, we spent the day with our very close friends, Jenn and Jay and their kids. We checked out the Eramosa Caves together. I think I am glad I had the excuse that I had to stay above ground with Lincoln, and Jenn was ever so kind in saying she didn't mind to stay with me :o)

Keeping mom happy as we wait for the others to come back up:

So as you can see, we are still taking Keziah out. Many people ask us if we will or not. To be honest, taking her out in public is MUCH easier than taking her to places where people know her, like church (or another sister church), family and friends. You see, the people in public have always stared at her ever since day one, so really, there is no difference in that environment. The people close to us know what she looked like before and so are taking in the changes as best as they can. We have heard from many that last week's fill really had them in awe (for lack of a better word) as to how big these things will get. I think that last fill-up just really hit people a bit more as it is really becoming obvious.

Keziah's Aunt Jenn made something ever so special for Kez; she sewed a doctor's outfit for Patches, Keziah's stuffie that she takes with her to the hospital!

Isn't it adorable??! She is one talented, caring and crafty person! We LOVE it! Keziah says "THANK YOU, AUNT JENN!!!"

And so today, with Patches and Kez dressed in their doctor outfits, they set out to help the baby that needed lotion and bandaids. We worked with saran wrap again to keep the lotion in place. I was able to put the lotion on her "owies" as well as saran wrap, so hopefully she'll let me tomorrow. The difference I noticed today was that if I used the word "cream", she became anxious. If I used the word "lotion", she was okay with that.

Here she is checking her baby's temperature with the thermometer:

Working the lotion and saran wrap, first on her hand, then on her head:

Although we won't be using those bandaids (tagaderm) anymore, I still wanted to work with them with her to help her get over her fear of them. At first she was hesitant, but once I reassured her that we will not be putting them on her and that they'll be staying home tomorrow, she went ahead and actually put it on the doll and took it off! I saw this as a big and positive step!

Just checking to make sure her baby's heart is still beating after taking the bandaid off :o) It was so cute because the whole time she was working with her baby, she would talk softly to the baby with encouraging words like "it's okay, it's just me, Keziah." or "I will hold your hand, it's okay." :o)

I am so proud of her! She did very well today with it all! I know tomorrow will be another story, but for now I feel we made some improvements as we gear up for the hospital.

We ask for your prayers, that Shaindy will be available to help her tomorrow and that we don't have a complete repeat of anxiety from last week.