I should've known...
There is no "easy" button...I just should've known.
"Zane should just need some plastic surgery to fix his ear and side cleft...that's it!" In case you're wondering, I really am that naive.
I remember one time when my kids were much smaller, a sweet girl came up to me after church and asked if I had a few minutes to chat. I made the time as she stressed the urgency of the matter. She then went on to apologize for/explain why she'd been treating me badly, for snubbing me in the hallways, and for avoiding me the previous few months. I didn't know what to say...I just sat there until she finished. I accepted her apology, of course, but had to admit...I hadn't noticed. EEK! I'm apparently the most clueless person on the planet...as opposed to the gal that asked how my Chinese kids would know they were adopted! But listen...I grew up with all boys and a mom who was very private and didn't broadcast her woes or dislikes. You're going to have to hit me with a 2x4 if you want me to grasp your displeasure with me...if not, I'll just chalk up your mean look to some bad sushi! In addition, I won't tell you I'm fine if I'm not...so feel free not to ask. I guess we're even.
So imagine my shock when we got the letter detailing Zane's initial evaluation at the U. It showed the 2 appointments we expected with the ear guy and cleft doc, but it also included an amendment that read something like this, "These appointments may take much longer than anticipated. You should also plan to see the following doctors..."...and it listed many more that hadn't even been on my radar. Thanks Santa...apparently "somebody's" been on the naughty list.
Nevertheless, we pulled up our bootstraps and set off for another long day at the hospital. Boy, were they not lying...although you have to appreciate their thorough treatment of our little guy. They cover every base...and the ones they didn't cover will be calling us to set up an appointment next week. No joke. The only comical moment was when we'd been there for about 3 hours, had seen numerous specialists, and Chris said, "Are we almost finished?" Dude. We hadn't even seen the doctor we'd been scheduled to see first!
Zane was a champ though...outside of running up and down the halls yelling...in Chinese, mind you..."Barney's on!"...because he just wouldn't want anyone to miss it!!! We thought he'd have a heart attack...because that's the only specialist he's not seeing...when Dora came on! Wow. He's all in...ya gotta love it!
We saw the dental dude first. Chris held him in his lap, facing him, and then laid him back onto the doc's knees. Through some pretty amazing charades by his oscar-winning mother, little man understood to open his mouth, stick out his tongue, and not bite the poor man given the task of fishing around inside his mouth. Win-win. Favorite moment: they gave both of the kids new toothbrushes. Zane used his for a fork/shovel for his pumpkin/chocolate chip muffin. Word.
The jaw lady...you're just going to have to forgive all the slang...I had to compartmentalize for my own sanity...so the jaw lady had interesting news. She said it wasn't as bad as she'd thought it would be but that surgery would definitely need to be done on his right jaw. This wasn't surprising to us, except that she said we might be able to get away with only one surgery...we were told it would be multiple...if we waited a while. If we did a surgery now, we would definitely be looking at several surgeries as he grew because the right side wouldn't grow along with the left. Better to wait for the left to just about be finished growing...then do the surgery to line everything back up. Clueless Wonder (that'd be me) was again shocked to hear that they'd have to take bone from his rib to rebuild the jaw. ICK...and UGH...and COOL...all rolled into a nice little nugget of joy.
They also had us go to a hearing specialist which Chris said was a joke. Picture it. Daddy, holding Zane, the Chinese escape artist, while they test his hearing. "Ok Zane, when you hear 3 clicks, press your button." Yea...sure...no problem. He's CHINESE...we're currently working on "More" and "All done." Next.
The speech therapist was able to get a little bit more down on paper as all he was looking for was consonant sounds. Go ahead, Mr. Zane, jabber away while this nice man tries to write down every sound you make...in the Chinese language. At least they had a picture book so we could point to the house, for instance, and say "house"...Zane would repeat the word...the doc would make a note. Unless Zane knew how to explain the pic in Chinese...then we were out of luck. We did have a few laughs though...that counts for something.
They even took pictures of little man...even that was not without its humor...warped humor...but still humor.
The cleft doc was the longest appointment as we talked through every possibility, both problem and procedure. I'll try to highlight. She thinks she can fix the side cleft, no problem, closing up that side of the mouth to match the other, with a small "z" shaped scar that would mirror the crease of the mouth. She thought it best to wait 6 months or so, just to give us some more bonding time...and there's no need to rush. We talked about the jaw some more and the benefits to waiting on that surgery too. They were all very intrigued that Zane seems to have an ear canal leading down to the ear "nub"...they're just not sure where it's coming from...ear drum or dead space. They'd have to do some imaging to decipher all that's going on there, but Zane has to be sedated to do that. With over an hour-long testing to his face and head, there's just no possibility of him remaining calm and still without it. The doctor is also concerned about causing him any unnecessary pain as they fish around in there as well as avoiding any further damage to what seems to be a damaged nerve on the right side of his face.
The doc also wants us to see a neuro guy due to the malformation of Zane's skull. It's not super noticeable at first glance but had immediately caused concern the first time we felt it. They also recommend we see a geneticist because they are thinking he has some sort of genetic disorder that would've caused all these things to the right side of his body. In addition to the obvious, his eye, nose, and cheek are also affected. Don't ask me what it's called. I only remember McDonald's. Whatever it is sounded like "golden arches"...McDonald's. That's all I've got. Anyway, it would behoove us to know if this is the cause...not because it would alter his treatment now in any way...but so we would be familiar with the cause and likely progression of the disorder. Regardless, we shall have to wait for those new doctors to call us to schedule.
Lastly, we saw the ear doc...the one we thought would be the only one we'd need! Psych.
We were in and out of this visit so quick our head was spinning...but it was still a good visit. He explained to us that he was the last step in this whole surgical rotation...which was surprising to me initially, although it's understandable. We also found out that the nub of skin on Zane's right side actually has quite the potential for reconstruction. He even has that "well" just above the ear lobe...so they wouldn't need as much bone from the rib...again. Good news. They still don't know what's happening in there to even know whether he has any hearing on that side...or if it's even a possibility...which is another reason for the imaging I mentioned earlier. It was surprising to hear that he'd want to wait as long as possible...typically until around age 8...to do the ear surgery. Dr. Henstrom explained they wanted to wait until the left ear was basically fully grown...which usually is around 8...so they could shape the new ear to match the left one. Fascinating stuff.
There you have it. The specialists we didn't see that day will likely be on our next rotation, including therapy...for the mother.
Update on Little Miss tomorrow...stay tuned.
"Zane should just need some plastic surgery to fix his ear and side cleft...that's it!" In case you're wondering, I really am that naive.
I remember one time when my kids were much smaller, a sweet girl came up to me after church and asked if I had a few minutes to chat. I made the time as she stressed the urgency of the matter. She then went on to apologize for/explain why she'd been treating me badly, for snubbing me in the hallways, and for avoiding me the previous few months. I didn't know what to say...I just sat there until she finished. I accepted her apology, of course, but had to admit...I hadn't noticed. EEK! I'm apparently the most clueless person on the planet...as opposed to the gal that asked how my Chinese kids would know they were adopted! But listen...I grew up with all boys and a mom who was very private and didn't broadcast her woes or dislikes. You're going to have to hit me with a 2x4 if you want me to grasp your displeasure with me...if not, I'll just chalk up your mean look to some bad sushi! In addition, I won't tell you I'm fine if I'm not...so feel free not to ask. I guess we're even.
So imagine my shock when we got the letter detailing Zane's initial evaluation at the U. It showed the 2 appointments we expected with the ear guy and cleft doc, but it also included an amendment that read something like this, "These appointments may take much longer than anticipated. You should also plan to see the following doctors..."...and it listed many more that hadn't even been on my radar. Thanks Santa...apparently "somebody's" been on the naughty list.
Nevertheless, we pulled up our bootstraps and set off for another long day at the hospital. Boy, were they not lying...although you have to appreciate their thorough treatment of our little guy. They cover every base...and the ones they didn't cover will be calling us to set up an appointment next week. No joke. The only comical moment was when we'd been there for about 3 hours, had seen numerous specialists, and Chris said, "Are we almost finished?" Dude. We hadn't even seen the doctor we'd been scheduled to see first!
Zane was a champ though...outside of running up and down the halls yelling...in Chinese, mind you..."Barney's on!"...because he just wouldn't want anyone to miss it!!! We thought he'd have a heart attack...because that's the only specialist he's not seeing...when Dora came on! Wow. He's all in...ya gotta love it!
We saw the dental dude first. Chris held him in his lap, facing him, and then laid him back onto the doc's knees. Through some pretty amazing charades by his oscar-winning mother, little man understood to open his mouth, stick out his tongue, and not bite the poor man given the task of fishing around inside his mouth. Win-win. Favorite moment: they gave both of the kids new toothbrushes. Zane used his for a fork/shovel for his pumpkin/chocolate chip muffin. Word.
The jaw lady...you're just going to have to forgive all the slang...I had to compartmentalize for my own sanity...so the jaw lady had interesting news. She said it wasn't as bad as she'd thought it would be but that surgery would definitely need to be done on his right jaw. This wasn't surprising to us, except that she said we might be able to get away with only one surgery...we were told it would be multiple...if we waited a while. If we did a surgery now, we would definitely be looking at several surgeries as he grew because the right side wouldn't grow along with the left. Better to wait for the left to just about be finished growing...then do the surgery to line everything back up. Clueless Wonder (that'd be me) was again shocked to hear that they'd have to take bone from his rib to rebuild the jaw. ICK...and UGH...and COOL...all rolled into a nice little nugget of joy.
They also had us go to a hearing specialist which Chris said was a joke. Picture it. Daddy, holding Zane, the Chinese escape artist, while they test his hearing. "Ok Zane, when you hear 3 clicks, press your button." Yea...sure...no problem. He's CHINESE...we're currently working on "More" and "All done." Next.
The speech therapist was able to get a little bit more down on paper as all he was looking for was consonant sounds. Go ahead, Mr. Zane, jabber away while this nice man tries to write down every sound you make...in the Chinese language. At least they had a picture book so we could point to the house, for instance, and say "house"...Zane would repeat the word...the doc would make a note. Unless Zane knew how to explain the pic in Chinese...then we were out of luck. We did have a few laughs though...that counts for something.
They even took pictures of little man...even that was not without its humor...warped humor...but still humor.
The cleft doc was the longest appointment as we talked through every possibility, both problem and procedure. I'll try to highlight. She thinks she can fix the side cleft, no problem, closing up that side of the mouth to match the other, with a small "z" shaped scar that would mirror the crease of the mouth. She thought it best to wait 6 months or so, just to give us some more bonding time...and there's no need to rush. We talked about the jaw some more and the benefits to waiting on that surgery too. They were all very intrigued that Zane seems to have an ear canal leading down to the ear "nub"...they're just not sure where it's coming from...ear drum or dead space. They'd have to do some imaging to decipher all that's going on there, but Zane has to be sedated to do that. With over an hour-long testing to his face and head, there's just no possibility of him remaining calm and still without it. The doctor is also concerned about causing him any unnecessary pain as they fish around in there as well as avoiding any further damage to what seems to be a damaged nerve on the right side of his face.
The doc also wants us to see a neuro guy due to the malformation of Zane's skull. It's not super noticeable at first glance but had immediately caused concern the first time we felt it. They also recommend we see a geneticist because they are thinking he has some sort of genetic disorder that would've caused all these things to the right side of his body. In addition to the obvious, his eye, nose, and cheek are also affected. Don't ask me what it's called. I only remember McDonald's. Whatever it is sounded like "golden arches"...McDonald's. That's all I've got. Anyway, it would behoove us to know if this is the cause...not because it would alter his treatment now in any way...but so we would be familiar with the cause and likely progression of the disorder. Regardless, we shall have to wait for those new doctors to call us to schedule.
Lastly, we saw the ear doc...the one we thought would be the only one we'd need! Psych.
We were in and out of this visit so quick our head was spinning...but it was still a good visit. He explained to us that he was the last step in this whole surgical rotation...which was surprising to me initially, although it's understandable. We also found out that the nub of skin on Zane's right side actually has quite the potential for reconstruction. He even has that "well" just above the ear lobe...so they wouldn't need as much bone from the rib...again. Good news. They still don't know what's happening in there to even know whether he has any hearing on that side...or if it's even a possibility...which is another reason for the imaging I mentioned earlier. It was surprising to hear that he'd want to wait as long as possible...typically until around age 8...to do the ear surgery. Dr. Henstrom explained they wanted to wait until the left ear was basically fully grown...which usually is around 8...so they could shape the new ear to match the left one. Fascinating stuff.
There you have it. The specialists we didn't see that day will likely be on our next rotation, including therapy...for the mother.
Update on Little Miss tomorrow...stay tuned.
