Wednesday, October 11, 2017

WHY WHY WHY?!?!

Hey friends! I promised to touch base with you on the WHY of Zane's surgery next week, here in Part 4 of Z-Day!

This surgery has nothing to do with the ear reconstruction...although the first appointment with his new ear doc will be the week after his post-op appointment in December! I can't even think that far down the road yet. Gulp.

This surgery also has nothing to do with the jawline or fixing the aesthetics of his face by building out the lower jaw on the right side. That won't be done until he's 18 years old when they would basically need to do an implant. Double gulp.

In the spring of 2016, when we were originally speaking to his ear doc about getting rolling on the reconstruction...he said based on the structure of Zane's face, we may need to see the other surgeon and deal with Zane's jaw first. SOOO...that put a hold on all-things ear-related, and we began the process of dealing with the jaw. Here's why:

The left side of Zane's face/jaw has grown as expected. The upper right side has also grown as normal. The bottom right has had no growth. So what is happening/will continue to happen is the left side will soon grow noticeably forward, while the right side will look as though it's just falling downward. Basically, the more time passes, the more deformed the facial structure will become. Obviously, it's better to try and curb that process before it gets too bad.

Again, that's the Eva-version of things that are way above my pay-grade, but I think you're able to pick up what I'm throwing down. 

So there ya go. Short and sweet! Just like Zane's Mama!!! :)


Monday, October 9, 2017

Post-Op...Translation: Total Shutdown for Zane's Life as He Knows It

These next couple weeks are already shaping up to be quite a blur so I wanted to go ahead and give the details for Zane's post-op so we might get some bonus prayers in there!! :)

For those of you that know Zane, you'll realize that this is where the rubber meets the road. This will be the hardest part for Zane, for his family, for the school, for the church...you get the idea. 

I mentioned in the previous post that we will have to stay at least one night in the hospital, maybe two. I'm just going to throw out all these other little nuggets for you to marinate on as well.

10-14 days out of school...which I did negotiate...not even kidding...down to a 7 day minimum instead. Just have to wait for our follow-up visit on day 6.

2 week soft food/liquid diet. No chewing of any kind. However, his jaw won't be wired shut, and it won't cause him pain to chew. Zane eats constantly. This will also include all the incessant chewing on non-edible items. This will be tricky, to say the least.

No recess for 6-8 weeks. No. Recess. For. 6-8 WEEKS. This is a show-stopper. A jaw-dropper. A game-changer. If you think that's overly-dramatic, you don't know Zane. Under this umbrella, they added the following:

No jumping.
No running.
No bouncing.
No rolling around on the ground or "running" on all fours.
No Zane-like activities.

No amount of time will allow the complete impact of that to sink in enough so we shall move on. 

There won't be any stitches that he might accidentally rip open or any way (SUPPOSEDLY) that Zane can damage the crank on his jaw. The bigger issue would be all the incidental contact with other children, flying soccer balls, falling down, yada yada yada. Since Zane throws himself on the ground all the time, just for fun...yea...someone is going to have to sit on his little self for 2 months. The surgeon said the hardest part will be that Mini Evil Knievel shouldn't feel much pain at all...not with the cranking, not with chewing movement, not much overall. While that's comforting for a Momma, the pain is also what reminds people to take it easy. He anticipates much frustration for Z because he will feel fully recovered in a couple weeks, but he will still need MUCH more recovery time. 

Sidenote. I found out today that Zane may also need to have teeth extracted if they believe it to be necessary. Dr. Burton had mentioned this a year ago, but it hadn't come up since. Originally, the thinking was that Zane's mouth was so small, we were going to need to pull some baby teeth so the permanent teeth would be able to come in unhindered when they were ready. Apparently, it may also be necessary for this surgery.

So...yea...

In a recent meeting with our school, everyone left with a desire to do whatever we can do to get Zane back in school, in spite of the limitations. However, as you can imagine, this will mean we need a fairy godmother to hang with him throughout the day to provide gentle, yet constant, reminders of this temporary new normal. He'll need separate outdoor time, special help at lunch, helpful reminders not to hang upside down at this desk, and on and on. There's really no other option because he struggles to control himself in the routine. When that routine goes out the window...and there's also no release for him by way of running around at recess...poor little man will be fighting a losing battle. As will his teacher, who's actually responsible for other little humans at the same time! :) 

If we aren't able to navigate those hurdles, my guess is that we will have to transition to some sort of home school, home care, home mental care...that last one was just for Zane's family...ok, just his Momma. Chris has always said we could never home school because we couldn't afford the therapy for them or me. Isn't that special? 

Anyway, I mentioned before that Zane will have to go back for a simple surgery to remove the plate after about 4 months and will be fully recovered in 6-9 months. In my mind, if we can just survive those no-activity 2 months, we'll be golden. 

Whew. I think that's probably more than enough for today. I also think the need for prayer in the recovery phase is fairly obvious. At some point, we should probably tell ya to just pray for some other crew, for Pete's sake...but for now, you feel free to just pop-a-squat right here. 

Part 4 of Z-Day will cover the WHY of his surgery. I'm pretty sure most people don't fully understand why this needs to be done right now...it may not be what you think! 

Just building suspense here, my people. Keep 'em wanting more, and all that. See ya next time! :)

Saturday, October 7, 2017

Zane's Surgery...PART 2

Happy Saturday, friends and family! I'm sure you've had enough time to digest the ear-portion of Z-Day so I thought it would be good to share the more intense portion of the surgery!

The jaw surgery will actually be completely different than the original plan that included a rib graft. The surgeon is basing this decision on function over appearance. Even though there's been no growth on that lower right side, it somehow still seems to be functioning well. So this will allow for the less-invasive option. While it's obviously fantastic to be avoiding the rib graft, I'll admit it was pretty overwhelming to process the new plan for this 3-4 hour surgery.

Here it is...in Eva-lingo...

They will be cutting his jaw in half and will screw a titanium plate on the bone. There will be a crank that COMES OUT THE SIDE OF HIS FACE that we will have to crank twice a day. Without hesitation, I literally laughed out loud. Are you kidding me right now?!? And how exactly are we supposed to keep Zane from messing with it? Surgeon's answer: "With kids, it's just out of sight, out of mind! He'll just leave it alone!" More laughing out loud. I think they finally started believing me when I asked if there was any possible way for Zane to pull out the plate or mess it up in any way...because I ASSURE you, if it's possible in ANY way, Zane will do it. Regardless...still no answer to that one, won't be putting a giant bandage on it or anything, and won't even be wiring the jaw shut, for good measure. 

Yea. 

Back to the plan...we will crank it twice a day for 2 weeks or so. This will create a separation in the jaw where new bone will hopefully grow to fill the gap. This would most likely happen in "normal" kiddos, we are just praying it will also happen with our little man. (If this doesn't occur, we will have to revisit the rib graft idea.) The new bone will lengthen the jaw bone as it fills in the space created with the cranking system.

If all goes as planned, an added bonus would be that this new growth will be a jump-start for the jaw, and it would continue to grow on its own. (If that doesn't occur, we will have to repeat this surgery in 4-5 years.)

In 3-4 months, we will have to do a simple surgery to remove the plate/screws. Full recovery time will be 6-9 months. 

Some additional thoughts about the surgery: 

The biggest risk of the surgery will be permanent nerve damage. You may remember that Zane already has permanent nerve damage from his first surgery because the nerve did not regenerate after they had to weave the nerve into the sutures on his cheek when they closed up the "side cleft." This is why his smile isn't as wide on the right side now. The surgeon explained that people typically have 5 nerves that run down our face, and they are typically in predictable locations. With Golden Har kiddos, like Zane, there may be 3 nerves, there may be 9. They may be as thick as spaghetti noodles; they may be as thin as a single hair. They will also not be in any predictable location. In his words, "My Golden Har kids are just really screwed up inside." :/ There are just a lot of wait and see issues with this one. 

We also just found out that we have to stay overnight, one night...maybe two. They said we'd have to stay until we can handle the crank system correctly...and Zane is good to leave it alone. Super dooper.

What to pray for in this part of the surgery? Please pray for big, fat nerves in obvious places! Please pray that we can find some miraculous way for big Z to ignore these crank sticking out of his face. Please pray for bone growth! 

Post-surgical details are extensive and will be upcoming in Z-Day...Part 3!


Wednesday, October 4, 2017

October 19th...better known as Z-Day...Part 1

See what I did there...Z-Day...kinda like D-Day?!?

*crickets*

*moves on in wake of terrible joke-telling*

Anywhoooo...10/19...that's the big day of Zane's surgery! I thought it might be helpful to break things down into chunks...

(Hence the "Part 1."

You didn't pay attention to that, did you? 

All this grammatical prowess is wasted on the likes of you! 

FOR THE LOVE...Pay attention!)

...because there are quite a few moving parts for the surgery. The surgeons are attempting to make the most of Zane's immobility...no clue why that would be...so we are, once again, doubling up on surgeries!

Let's start with the "lesser" task of checking out the ear/s. This is NOT the ear reconstruction...this is checking out what's going on inside the ears. We had a bit of a surprise to learn that the "good" ear is getting some attention as well. 

According to the surgeon who's been leading the charge with all-things-Z, Asians tend to have heavier wax build-up than Caucasians. Is this true, my Asian peeps? Regardless, she has had to scrap out a significant amount from his good ear at every bi-annual visit over the past 4 years. He's also had a couple concerning moments with fluid in the good ear...the primary concern being that if something happens to the ear drum on this side, he would suddenly be completely deaf. Dr. K said she really needs to scrap his ear out significantly to make sure the pressure of the wax and the extra fluid isn't causing his ear drum to "cave in." (That's Eva-translation.) It hadn't looked great the last couple times we were up for a visit, but she needed to wait and scrap it out fully while he was under anesthesia...no clue why THAT is! :) She may have to place tubes but won't know until she gets in there. Again, the key here is that this is his only functioning ear at this time. 

Nub-side...as we affectionately call it...is a little more straight-forward, yet still interesting! Under anesthesia, Dr. K will attempt to "open up" the ear canal that runs down the side of Zane's face to see what she can actually see about the inner ear behind the nub. This could also only be done while big Z was completely immobile! Wouldn't it be a kicker if he ended up actually being able to HEAR on that side?!?! Crazy stuff! 

But wouldn't that also be just like my God to show up in the impossible?!? 

That's all for Part 1...next up, in Part 2, we'll cover the more intricate jaw surgery. 

As always, we appreciate each and every prayer!


Monday, October 2, 2017

Our Little Ninja Could Use Some Extra Prayer

I'll be the first to admit...the proverbial ball was dropped on this crazy ride, and since I was the once running the ball, well...let's not get bogged down in the little details.

I'm committing to posting consistent updates from here on! OK...I'm going to give it the ol' college try to stay current! Whatever, man...read away whenever a random post appears! Keeping it real.

Getting back to big Z...his next surgery and all those details really will be forthcoming in the near future, but for now, I just wanted to share some struggles that we've been having, leading up to these next steps.

Zane has been talking about Zoe and her death quite a bit over the past 6 months or so. If you know Zane well, it may surprise you to hear that he pauses long enough to have such profound conversations...in actuality, he drops these show-stopping bombs and then moves on to the typical, "Where is Dad...what's for dinner...can I watch tv...can we play the animal game"

...and on and on and on. So it really is challenging to try to navigate his true feelings and emotions concerning the whole thing. However, there is one reoccurring theme as of late, and this is where this momma could use some prayer for her little man. Here ya go...

"I don't want to be old when I die. I want to be young when I die...just like Zoe...If I don't die soon, Zoe won't recognize me in Heaven. She won't even know we we're friends...Can we reverse our age in Heaven? Can God do that so Zoe will know who I am...I hope I die in my surgery so I can go be with Zoe, and she will know who I am...I will know who Zoe is, but she won't know who I am if I don't die soon...I hope I die soon." 

Yea. I'm done. 

Then you have the following sprinkled in there: "Why did God want Zoe to be in Heaven with Him more than with me...Did it hurt Zoe when she died...I hope it doesn't hurt when I die in my surgery...What if I don't wake up from my surgery..." 

This is truly the definition of an

I. Can't. Even.

moment. 

Just so you know...we've talked through every statement when possible. We've talked about how much we'd miss him. We've talked about the glories and wonder of Heaven. We've talked about no pain and suffering and tears...all. the. things.  But the reality is...our little man is wrestling with these life and death issues in general, mixed in with still being torn up about his best friend.

He could use your extra prayer. We could use your extra prayer. He knows so many people love and pray for him. He loves that...and so do we. And we are so grateful. 





Thursday, September 22, 2016

Win or Lose, Proud to be a Danville Bear

I'm sure this will shock many of you who thought I'd fallen off the face of the earth...believe it or not, it feels that way on many days. But those updates will have to be another post that I get to next time...keep an eye out...maybe next June. 

For now, I just want to share some thoughts with you about sports, and life, and parenting, and adulting, and teaching our kids about adulting. Hopefully you're picking up what I'm throwing down, ever so subtly. 

If you're a local friend/follower, you know that our school just had to cancel the rest of the Varsity football season due to injuries and numbers. We started the season with lower numbers and, as it goes in EVERY football season, the injuries mounted. Unfortunately, they just didn't have enough healthy players to finish the season safely. So the decision was made to cancel. As you can imagine, the decision was devastating to the players and coaches. Nobody dedicates months of workouts, practices, and injuries because they can take or leave it. I can assure you, the guys left standing (and those that are not) would give anything to be playing under the Friday night lights tomorrow.

Here's what I find troublesome, and why I feel COMPELLED to raise my voice...the response these guys are getting from the student body, the community, and even some faculty has me dumbfounded. If there ever was a time to link arms with a brother...to carry him on your back, if necessary...to hold up his head when he struggles to lift it himself...it is when dreams are crushed and battle wounds are fresh. However, this has not been the response, overall. Instead of hearing encouragement and admiration, these boys are being mocked and ridiculed by the very people they've represented. I cannot stomach such a reaction. I cannot stay silent. If I am but one voice, I will be the loudest and most constant voice they hear. 

At our team (football/cheerleaders) dinner last week, I asked the Coach if I could say a few words to the team. In a nutshell, let me share what I said to them and may some of it resonate with you today.

I just want you to know how extremely proud I am of each one of you. You have given your heart, your soul, your bodies to this game and this team. There are those that have seen fit to criticize your effort, your abilities, and your heart. But I just want to say how much I admire your determination to take that field day after day, week after week. You've shown up and given more effort that most of us could even fathom. I'm not just saying this as a mom...I'm saying this as a coach and a spectator as well. Anyone that knows you, knows that you would be out there if it were up to you. I'm proud of you. I'm proud of the men you ARE, and the men you are BECOMING. You WILL be stronger because of this. There is no substitute for learning what it takes to rise up from the ashes and press on. Show me a man that has faced adversity and has known what it is to drag himself out of the pit to keep going. This is a man I can get behind. This is a man I would follow. Let me tell you, there's nothing sadder than someone who's always been on top...to suddenly face hard reality as an adult but has no idea how to handle it. They choose instead to walk away from their family, their job, their responsibilities. You know defeat now...how much sweeter will the victories be down the road? We believe in you. Not just as football players, but as men. Remember that.

And so, I would ask you to evaluate your own responses. Students, (if any of you read blogs written by old ladies) put yourself in their shoes. I know it makes you feel better when you can give someone else a hard time about their failures. Trust me, adults do it too. It's a sad reality. But just for a minute, think...what if everything you'd worked for for over 3 months was suddenly cancelled...and not only that, your peers...your mentors...your friends pounced on the opportunity to question your character, your determination, your heart. Because let me assure you, the time will come when your own dreams are crushed. How would you want someone to handle those dreams of yours? Same goes for faculty, staff, adults in the community...how have other people handled your own dreams that were crushed? 

We need to do better. We must do better. This isn't about a game. This is about integrity. If these boys can't trust you with their losses, how can they trust you with their victories? 

Another thought...if you're reading this and thinking, "But..." you've missed the whole point. Any excuse you have for criticizing the team and coaches right now, is honestly, just selfish. There is a time and place to reevaluate how to move forward, what steps should be taken, what was good, what should be changed...but now is. not. that. time. Now is the time to pick up the fallen and lift up the broken. Now is the time to come together as one. Now is the time to celebrate effort and heart. Now is the time to say, "Win or lose, I'm proud to be a Bear!" 

And frankly, if you cannot say that, then now is the time to be silent. I'm speaking for my family, for the cheerleaders, for all the moms of these boys, and for the wives of the coaches. We will stand together. We hope you'll join us, but if not, kindly step aside so we can move forward. We want to celebrate this team, our CC team, our volleyball teams, and our entire Bear family. More precisely, we want to show our children...and our children's children...what family really means. 






Sunday, August 9, 2015

A lot can happen in 8 months…or weeks

I am well-aware that it has been WAY too long since I last posted in The Carr Ride, but I was still shocked to see it was actually December 2014!!! I've written many, many posts since that time…in my mind. Lot of good that does you, but my good intentions were just that…good intentions! Maybe someday soon we can get back to spending more time together. I'd like that. I'll have my people get with your people. For now, I'll just update you on the latest news because I don't have any choice! :)

For those of you that are among our SE Iowa buddies, you'll see that we have a new little man hanging out with our crazy crew, effective immediately. His name is Jin Yu Lin, and he is 7 yrs old…a year older than big Z. (He speaks very good English. So that's awesome!) This brings our count back to 6…who's up for a dinner invite?!?

Deep breath. Grab a seat. I know…I know…ok, here we go…(better grab your DP and peanut butter…it's a doozie!)

There are so many places to start in this story (and so many different perspectives) so I'll just try to cover the highlights.

A couple months ago, we received an email from a friend of a friend, telling us about a Chinese family that had moved to the area from Illinois. They spoke very little English and might need some help enrolling their little man in school. Their jobs at the local restaurant had been lost, for whatever reason, so they moved to Burlington to work at the Family Buffet. We also found out that Jin Yu had even been living with an older American couple in Illinois for 18 months. "Grandpa Erik" asked if we could offer some assistance in getting him enrolled in school. We were happy to help when needed.

Unfortunately, after 3 weeks of Jin Yu just hanging out at the restaurant, his parents contacted that same couple to see if Jin Yu could move back to live with them again. We got word and went in immediately to try out and help with any school information so they wouldn't feel the need to send him so far away. 

Jin Yu's dad is a cook, and his mom is a waitress. They put us in a back section by ourselves, brought him over to our table to chat with us, and they went back to work! He is such a sweet little guy and…busy…oh so loud and busy...and seemed to love chatting with us. Let's just put it this way: Zane couldn't get a word in edge-wise! For the love. 

A couple days later, we went back again to help answer any questions and offer to have him come play with Zane sometime. Through an interpreter (every conversation has to go through multiple layers of interpretation), they asked if he could just come live with us. You have to understand the culture to truly grasp the education/work priorities, but they are basically willing to do anything at all, in order for their son to get the best education possible, while they work as much as possible. It's much like sending their son to boarding school. Definitely NOT wanting to simply abandon their child. Just such a different culture!

Regardless, we were dumb-founded and told them we'd need much consideration. 

We bounced back and forth about the best thing for Jin Yu and the other kiddos. We wanted to help so he would be closer to his parents and maybe eventually get him back to living with them, yet we recognized the need to be sensitive to the needs of our own kiddos. Life sure is messy sometimes..but always a gift.

Honestly, Chris and I couldn't imagine adding even a single thing to our overflowing plates. Chris is coming off the end of his 6-week sabbatical with a full-throttle fall schedule. I am coaching Varsity Cheerleading at Danville, working my Jamberry business more than ever before, and getting ready to direct the church choir again in the fall. Of course, we also have the schedules of our 5 kids to hurdle and church activities. Adding another person into that chaos, especially in this situation, seemed almost foolish. However, similar to how we felt initially when we first started the adoption process, to simply do nothing didn't seem right. God clearly continues to bring these children-in-need to our doorstep…muddy circumstances seem to be a part of the package.

After much discussion, we came up with the initial plan. He will stay with us throughout the week. They will come pick him up on Sunday afternoons, and he will stay with them until Monday evening @ bedtime. He'll also go to the restaurant on some Friday nights so Chris can devote some time to solely watching Bryce play football. (This was an issue since I'll be coaching the cheerleaders.) This was a HUGE adjustment on their part since they wouldn't have seen him for months-on-end if they'd have sent him away so we were very happy to have them agree to spending time with him on a weekly basis. This was great news! :) Our desire would be to work through the cultural/societal issues (with baby steps) so that someday soon, he could go back home to live with his parents yet stay in school. For now, he will be living with us full-time, with the exception of Sunday nights. 

Welp…my peanut butter is gone…how about yours?!?  :)

UPDATE: we all met up at the school last Monday to get Jin Yu registered for school. Please just enjoy that visual. My 5 kids, myself, Jin Yu, his parents, and a JH Chinese boy who came to help interpret…filling out school registration papers…you know the ones…where you fill in your address and personal information on no less than 20 forms. HAHA. Yea…yuck it up.

He's been living with us ever since! He and Zane have had a great deal of "growing pains." They're both determined to be the top dog at the Carr Castle…not remembering that the true answer is NEITHER ONE! :) But it gets a little better every day. 

I've had some ups and downs in getting the room ready because I had to clear out some drawer and closet space for Jin Yu…Zoe's space. God keeps forcing me to deal with these issues of his better plan. At some point, I might just give in…hope that happens soon before it kills me. 

We've had some *heavy sigh* moments when he grabbed my hand the first night and said, "Well, I guess you're my new mom now!" We worked through that and then had to come up with what he could call Chris and I. I suggested Aunt Eva, Momma Carr, etc, and then as a joke, I added Momma E. He loved it. Great. (Now even Zane is calling me that.) The funniest part was when Landry added, "…and dad could be Daddy G!!!" Bwahahaha…forget the fact that it sounds like a rapper name…HAHA…it stuck! :) So there ya have it…Momma E and Daddy G. I wouldn't suggest you call Chris that name around town. Take my word for it. :)

Speaking of names, after getting the clearance from his mom, Jin Yu will go by Kai at school/church. Kai Lin. He's really excited about it! He is such a sweet and loving boy, and we look forward to introducing him to you all. Please join us in praying for his sweet parents as well and for our ability to show Christ to them. It's only through His grace that this endeavor will succeed. We don't have this whole thing mapped out but are just willing to let it play out, at God's leading. 

We also covet your prayers for our family as we continue to adjust to life without Zoe…and that we would be able to open our hearts once again to one of His children.