Just a note about hearing loss and decisions

On one of my one line chat groups for microtia/atresia someone commented about people not electing the BAHA for their children. I was bothered by it and yes I did respond but I felt I wanted to write what I thought about the subject on my blog since well it is my blog. :) So now that Trey is 4 I have noticed more and more the small problems with his unilateral hearing loss. When he was younger I could honestly tell you I did not notice much on how he could not hear on his left side. I tried to make sure I would tell Trey where I was if I was calling him from another location because he couldn't tell from my voice where to go but sometimes he could or at least it appeared that way. Now that he is getting older and doing more and more Big kid stuff like soccer and preschool, I have noticed definite times he could not hear me or his coaches. At times his hearing loss gives him the appearance of being ADD though he could be if you met my husband it wouldn't be out of the question. I know I would like to try the BAHA again with an audiologist who knows how to program it correctly so we can get a real trial to see if Trey does well with it or just wants nothing to do with it. It's hard because some people think a BAHA is like wearing glasses or insulin and that they would provide their child with anything that the need. I disagree with that sentiment. If a BAHA was just as easy as glasses that would be great. It would be even better if a BAHA had the same cost as glasses or the cost of medication that is covered by insurance. As it stands the BAHA processor itself is not covered by insurance unless you get the surgery or fight the insurance company and appeal the denial. I know money should not be an issue but it is a lot of money for something he might just hate and refuse to wear. I guess if I thought Trey like having the BAHA so much that it made any difference for him I know we would have already gotten him a softband BAHA or even had scheduled surgery for him. But to be honest part of me wants him to want a BAHA and another part doesn't. My concerns are with him wearing it and playing sports or just being a rough and tumble little boy. Well what I can say is that we will in the near future talk to another doctor about the BAHA and get all the updated info we can about the pros and cons and hopefully one more trial and if he wants it he will get it but if not, it will be up to him. I know this is funny coming from a parent who decided for him regarding ear reconstruction but won't for the BAHA. I guess together we take the middle road overall with regards to his microtia/atresia. I think that we parents do what we can and sometimes that means making decisions for our children and at others letting our children decide. Either way there is no right decision just a decision.

1 year 2 months post op stage 1

It seems such a long time ago that Trey had his 2 surgeries to build his big ear. I am writing this almost 8 months past stage 2 and so far everything is better then I could hope for. His ear looks great, the color is great, the scars on his medpor ear are hardly visible. At times I would look at his healing ear and worry if we made the correct decision and would it look good enough. Well as time goes on I believe the answer is yes. I know I can't predict what may or may not happen regarding the ear but currently he is happy with it and has little memory of his experience. Trey still loves Dr. Lewin and I can always get him to lay on his right ear at night by saying Dr. Lewin asked you to.

2 months post op stage 2

It has been 2 months since stage 2 and the ear is doing great. Trey is also doing great and life finally is normal, no cup, no stitches, no more surgeries at least until jaw surgery years from now. His ear is looking great, great projection and it looks like an ear. Yes the ear does not look like his natural big ear but it looks as good as i could have hoped. There is still redness where the stitches were but I know those lines will fad and the ear will even be better. The ear does grow just a bit of hair in the bowl but only mom sees it and it really isn't enough to even try and trim it. The ear still needs to be cleaned to help get rid of the dead skin cells but that is to be expected with skin grafts. His arm scar is fading and will fad more and more as time goes by to just be a thin white line. Oh just to note in the pictures Trey is drinking apple cider for New Years, daddy's idea :) The other picture is Trey with his bunny bears, notice that all the ears look the same now.

As for as the BAHA, we finally got a loaner which Trey basically wears to school only. He says he doesn't like it but is very good at wearing it at school but as soon as he is in the car he takes it off. We are not yet sure how much it helps, one draw back is that Trey gets asked about his ear because of the BAHA and he at this point doesn't like that type of attention so we are going to weight that in as well with our decision to some day go with the BAHA. But for now we will enjoy the loaner while we have it.

12 days post op pictures

post op picture

This is Trey at his one week post op appointment. The ear looks great. There was a crease in the lobe so we are taping it and using the cup again for another week in hopes to encourage the crease to go away. If it doesn't we can go back in the future when we want to for a simple fix per Dr. Lewin but we are hoping it will just heal fine. We are looking forward it to being healed up. She did do fat injections so his cheek looks as full as his right cheek and she put a few stitches to help with his small bald spot to make it smaller and less noticeable when he has a short haircut. She also tried to revise his arm scar to make it smaller as well but over all she was really happy how he healed. He isn't supposed to sleep on his ear mainly so it stays in place, he doesn't have the boney structure to keep it even with his other ear. His is due to his Hemifacial Microsomia. Thankfully he usually sleeps in his right side anyways. We love Dr. Lewin and can't say enough to how wonderful she has been. Trey loves her still and is very happy with his new ear. I have no regrets with the surgery and so thankful we were able to do it at such a young age. I will post pictures as it heals and hopefully in six months his ear will fully healed.

Stage 2 Medpor Complete

Trey is back at the hotel resting from his stage 2 medpor surgery this morning. It was a much shorter surgery. He is swollen since Dr. Lewin was able to do fat injections this time so his left cheek is swollen and his stomach bruised. He really looks like he has plastic surgery today which is what he had. Or he looks like he got into a fight with Mickey Mouse. He seems to be in a little pain but from his fat injections from his belly. We are going to stay at the hotel for a few days and maybe venture out into the world on Thursday. So glad this journey is over and his final healing is underway. I will post pictures when I can.

6 months update

It has been 6 months since Trey had his surgery. His ear is looking great, the skin color on his ear is looking more even. His arm scar is starting to fad and I don't think will be all that noticeable the older he gets. He hair has grown in except for 2 small spots but even when his hair is cut short you can't see those spots anymore.

Though we are happy with his new big ear, we are set for stage 2 Oct 26th. I am not sure all that will happen except that the lobe will be turned and raised making his new ear smaller and closer to the size that is wanted. We see Dr. Lewin again on the 25th and will know more about it then. We do know the surgery will not be as long and I am hoping Trey will bounce back from the anesthesia faster since we are hoping to spend a few days at Disneyland before our follow up appointment with Dr. Lewin. We are hoping everything goes well with stage 2 so we will be done with outer ear reconstruction. We are still waiting for Trey's loaner BAHA to come in so we will have 6 months to try it out and see if he can benefit from it. Right now he is doing well in school and learning to focus and lengthen his attention span and so far so good.