Thank God for technology! We got to have an "appointment" this morning on Skype with the director of the Children's Hospital pediatrics plastic surgery. His name is John Reinisch ....he invented the Medpor (one of the options for reconstructing an ear with microtia)....he taught at USC and worked at the Children's Hospital of Los Angeles for a long time. He's been doing this about 30 years! I was worried to be referred to him at first...because everything I find on his accomplishments is about the Medpor reconstruction. I love that he's the mind behind that idea...but I was more concerned about Maxson's face at the moment!
We were told if he didn't get his macrostomia (lips) and cheek fixed soon he'd have speech problems. Obviously that scared us and didn't want him to have delays because we didn't take an initiative. The Dr. from Texas....Dr. Fearon....said to let him develop more and it's only cosmetic. Dr. Reinisch said the same thing today. Makes me sad other doctors are telling people their kiddos need unnecessary surgeries. For that reason alone....I get my education at the University of Google! I will not be scared or pressured into doing anything to Maxson that I don't research first and/or feel is necessary. Don't get me wrong....I know doctors are obviously educated...but they are human and make mistakes like anyone else. And doctors don't know everything...that's why there are specialists...who are also still human. Maxson doesn't have a voice or say....but that's where I come in.
I learned some interesting things today! I learned that since Maxson has his whole ear...it's just folded....that they could POSSIBLY just open it and reposition it in the place it's supposed to be (since it's 14mm off). I didnt' understand how that was possible since his ear is closer to his jawline...and he has an ear canal....but apparently the ear canal is almost always in the correct spot...it's just the outer part of the ear that's off. In all my researching and speaking to other doctors no one has mentioned that! It was like a light bulb went off in my head! I was worried they wouldn't be able to do anything to his ear in the future because of the ear canal...most people with low-set microtia have atresia (no ear canal) so it only made sense how they could fix their's..but Maxson's was a different story! I get it now!
I also learned that Maxson's cheek can be fixed! All they do is inject fat into it to make it even with the other side :)))) Dr. Reinisch did a split screen on the computer and showed me before and after pics of other patients with the same facial anomalies. He also said his mouth is an easy fix. I was expecting at least 6 surgeries.....he said Maxson's ear, cheek, and mouth can all be done in one surgery! Hearing that was like music to my ears!
The cherry on the whole conversation though was when he explained to me about opening his ear canal more (it's like a cone right now....it's wide then becomes narrow)... apparently alot of patients who have an ear canal but it's narrow...get it opened and then can hear better! I explained to him his CT results (he was NOT happy they gave him a CT scan...he said it's pointless to do CT scans on babies with that much radiation when they can't do any surgeries at the moment anyways) but he said even though he was born with the stapes embedded in the soft tissue....that was when he was 2 weeks old and that could've changed by now! Oh man I'm hoping!
I have to call his office on Monday to set up an appointment with him to have a consultation the same week we'll be at the Ear Conference. There's 2 ear conferences going on...one at the Terranea Resort and the other at Disneyland. Apparently Dr. Reinisch and his colleagues will be at the Disneyland one...but I already paid and signed up for the other one :/ I could POSSIBLY get a refund...but it's going to cost the same either way and I'm sure I'll learn the same things at both. It's not like I can hang out with and talk to the doctors I choose. I also need to call the Balboa Craniofacial Center and get that referral!! They'll write one since we'll be seen in California. I can call our case worker here and Maxson's pediatrician and start the paperwork!
We're very excited!! It's the best news I've ever heard in m y life!! One surgery and possible restoration of his hearing! I couldn't have wished for anything more!
If you want to see how the surgery is done....here's the video. It's a tad gory for me...
Here's another video of his work!
We were told if he didn't get his macrostomia (lips) and cheek fixed soon he'd have speech problems. Obviously that scared us and didn't want him to have delays because we didn't take an initiative. The Dr. from Texas....Dr. Fearon....said to let him develop more and it's only cosmetic. Dr. Reinisch said the same thing today. Makes me sad other doctors are telling people their kiddos need unnecessary surgeries. For that reason alone....I get my education at the University of Google! I will not be scared or pressured into doing anything to Maxson that I don't research first and/or feel is necessary. Don't get me wrong....I know doctors are obviously educated...but they are human and make mistakes like anyone else. And doctors don't know everything...that's why there are specialists...who are also still human. Maxson doesn't have a voice or say....but that's where I come in.
I learned some interesting things today! I learned that since Maxson has his whole ear...it's just folded....that they could POSSIBLY just open it and reposition it in the place it's supposed to be (since it's 14mm off). I didnt' understand how that was possible since his ear is closer to his jawline...and he has an ear canal....but apparently the ear canal is almost always in the correct spot...it's just the outer part of the ear that's off. In all my researching and speaking to other doctors no one has mentioned that! It was like a light bulb went off in my head! I was worried they wouldn't be able to do anything to his ear in the future because of the ear canal...most people with low-set microtia have atresia (no ear canal) so it only made sense how they could fix their's..but Maxson's was a different story! I get it now!
I also learned that Maxson's cheek can be fixed! All they do is inject fat into it to make it even with the other side :)))) Dr. Reinisch did a split screen on the computer and showed me before and after pics of other patients with the same facial anomalies. He also said his mouth is an easy fix. I was expecting at least 6 surgeries.....he said Maxson's ear, cheek, and mouth can all be done in one surgery! Hearing that was like music to my ears!
The cherry on the whole conversation though was when he explained to me about opening his ear canal more (it's like a cone right now....it's wide then becomes narrow)... apparently alot of patients who have an ear canal but it's narrow...get it opened and then can hear better! I explained to him his CT results (he was NOT happy they gave him a CT scan...he said it's pointless to do CT scans on babies with that much radiation when they can't do any surgeries at the moment anyways) but he said even though he was born with the stapes embedded in the soft tissue....that was when he was 2 weeks old and that could've changed by now! Oh man I'm hoping!
I have to call his office on Monday to set up an appointment with him to have a consultation the same week we'll be at the Ear Conference. There's 2 ear conferences going on...one at the Terranea Resort and the other at Disneyland. Apparently Dr. Reinisch and his colleagues will be at the Disneyland one...but I already paid and signed up for the other one :/ I could POSSIBLY get a refund...but it's going to cost the same either way and I'm sure I'll learn the same things at both. It's not like I can hang out with and talk to the doctors I choose. I also need to call the Balboa Craniofacial Center and get that referral!! They'll write one since we'll be seen in California. I can call our case worker here and Maxson's pediatrician and start the paperwork!
We're very excited!! It's the best news I've ever heard in m y life!! One surgery and possible restoration of his hearing! I couldn't have wished for anything more!
If you want to see how the surgery is done....here's the video. It's a tad gory for me...
Here's another video of his work!
This is awesome news Jenn! You are a great mom & voice for Maxson & I am so glad you are researching & getting different views & opinions! Super exciting!
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