Anybody wondering what's been going on with Little Man?!?
It's been quite a long time since I've given any updates on Zane's health…so yea…here goes…
We saw the first slew of docs for Zane right in the middle of all of Zoe's heavy-duty procedures back in March-May of 2013 so his issues naturally took a back seat. I won't rehash all the specifics, but you can be sure he will see almost every specialist at the University of Iowa by the time he graduates high school. The days when we believed he would have simple ear reconstruction have long passed. Some issues will be dealt with promptly, while others will be ignored until Zane's head is full-grown…primarily to avoid having to repeat surgeries as he grows.
The jaw (he doesn't have a right maxilla) will likely be last…around 18 years old. The ear reconstruction will be done when he is 7-8 yrs old…basically the time when the ears are full-grown. (Did you know that?!? Guess that's why little boys tend to look like they have dumbo ears…they have to grow into their grown-up ears!) By waiting, they'll be able to match the new right ear to his left one. Won't that be a crazy day?!? A Baha hearing aid (implanted on the bone behind the new ear) will be in the future as well…probably around age 8 or 9. He has no hearing in that right ear through regular head phones, but he can hear perfectly when they tested him with the bone device. Basically he doesn't have "surround sound" and may struggle with background noise, but the left ear is awesome. He'll be receiving speech and hearing assistance from a local agency.
SO…the only remaining issue is what we've always called the "side cleft." Apparently it's not really a cleft, but you know what I mean. (This is the spot that the neuro doc thought might have been caused by amniotic bands because it looks more like a "pull on the skin" as opposed to a cleft.) It's the thing that makes him have such a giant smile…I'm actually gonna miss that, but it will help the little dude with his speech and eating.
When we first met the docs for Zane last March, the collective agreement was that we'd wait 6 months to do this first surgery…simply to allow for bonding time. His doctor is very sensitive to that. We set a September date.
As fall approached, I had a nice, long phone conversation with the surgeon…talking about Zoe and how the family was doing in the aftermath, what the surgery would entail, and what this would all mean for Zane. We were sailing along until we moved to the recovery portion of the procedure. Listen closely, friends.
Dr. K said, "The recovery time will be about 3 weeks. During that time, there needs to be no running, no jumping, no yelling, no sudden movements, no chewing, etc."
To say I "lol'd" would be the understatement of the year. HA! I was cracking up as I said, "Are you going to sedate him?!?" She said, "Of course he'll be sedated for the surgery!" And I'm all…"No, I'm talking about for the 3 weeks!!! Because I can tell you right now, that's the ONLY way that's gonna happen!"
So in my infinite wisdom, I elected to postpone said procedure until Zane could understand better and hopefully comply. Yea. We're only kidding ourselves that that day will ever come…but still…we moved the big day to the end of May.
As time passed, I began to think about Zane and what makes him tick. The primary thing that matters to him is doing whatever the bigs are doing (that's the older kiddos, for those of you playing catch up)…and what will they be doing in May…playing outside…constantly…running, jumping, screaming…you get the idea. So since that seemed like cruel and unusual punishment, we moved the big day yet again…this time, to a date when nobody wants to be outside at all, let alone playing out there for hours.
And here we are.
We saw the first slew of docs for Zane right in the middle of all of Zoe's heavy-duty procedures back in March-May of 2013 so his issues naturally took a back seat. I won't rehash all the specifics, but you can be sure he will see almost every specialist at the University of Iowa by the time he graduates high school. The days when we believed he would have simple ear reconstruction have long passed. Some issues will be dealt with promptly, while others will be ignored until Zane's head is full-grown…primarily to avoid having to repeat surgeries as he grows.
The jaw (he doesn't have a right maxilla) will likely be last…around 18 years old. The ear reconstruction will be done when he is 7-8 yrs old…basically the time when the ears are full-grown. (Did you know that?!? Guess that's why little boys tend to look like they have dumbo ears…they have to grow into their grown-up ears!) By waiting, they'll be able to match the new right ear to his left one. Won't that be a crazy day?!? A Baha hearing aid (implanted on the bone behind the new ear) will be in the future as well…probably around age 8 or 9. He has no hearing in that right ear through regular head phones, but he can hear perfectly when they tested him with the bone device. Basically he doesn't have "surround sound" and may struggle with background noise, but the left ear is awesome. He'll be receiving speech and hearing assistance from a local agency.
SO…the only remaining issue is what we've always called the "side cleft." Apparently it's not really a cleft, but you know what I mean. (This is the spot that the neuro doc thought might have been caused by amniotic bands because it looks more like a "pull on the skin" as opposed to a cleft.) It's the thing that makes him have such a giant smile…I'm actually gonna miss that, but it will help the little dude with his speech and eating.
When we first met the docs for Zane last March, the collective agreement was that we'd wait 6 months to do this first surgery…simply to allow for bonding time. His doctor is very sensitive to that. We set a September date.
As fall approached, I had a nice, long phone conversation with the surgeon…talking about Zoe and how the family was doing in the aftermath, what the surgery would entail, and what this would all mean for Zane. We were sailing along until we moved to the recovery portion of the procedure. Listen closely, friends.
Dr. K said, "The recovery time will be about 3 weeks. During that time, there needs to be no running, no jumping, no yelling, no sudden movements, no chewing, etc."
To say I "lol'd" would be the understatement of the year. HA! I was cracking up as I said, "Are you going to sedate him?!?" She said, "Of course he'll be sedated for the surgery!" And I'm all…"No, I'm talking about for the 3 weeks!!! Because I can tell you right now, that's the ONLY way that's gonna happen!"
So in my infinite wisdom, I elected to postpone said procedure until Zane could understand better and hopefully comply. Yea. We're only kidding ourselves that that day will ever come…but still…we moved the big day to the end of May.
As time passed, I began to think about Zane and what makes him tick. The primary thing that matters to him is doing whatever the bigs are doing (that's the older kiddos, for those of you playing catch up)…and what will they be doing in May…playing outside…constantly…running, jumping, screaming…you get the idea. So since that seemed like cruel and unusual punishment, we moved the big day yet again…this time, to a date when nobody wants to be outside at all, let alone playing out there for hours.
And here we are.
