Update on Trey with a baha Oticon Ponto

Lesson learned about how to see how scared kids are regarding surgery.  So a year ago we met with a local ENT about doing a trial with a Sophono hearing device that works with magnets rather then an abutment.  Trey said he liked it but did not want surgery.  We got a divino used device on a softband and we learned he hated the softband and would not wear it.  We had one more appointment with the ENT and I told the doctor that Trey just didn't want surgery so he turned to Trey and told him that after surgery he will get to take home 10 gallons of ice cream.  Trey's eyes of course lit up.  As we walked out I asked again and he said he wanted the surgery.  I told him if it was for the ice cream I would be happy to get him ice cream with out the surgery.  He said no he wanted it.  So last February he had the abutment implanted in a one surgery and received his Ponto just before school started.  Oh and he never asked for the ice cream.  However this mom reminded the surgeon of his promise and after forgetting twice he eventually gave Trey a half gallon of ice cream (no way would I do 10 and a 6 year old doesn't know the difference)  He likes his Ponto but doesn't love it.  He likes hearing better especially at school.  He is great about wearing it at school but doesn't wear it at home.  He doesn't like it because it makes him different. 

At the start of the school year I did talk to the teacher and she had me come into the classroom one morning during the first week of school to talk to the classmates.  Trey and I talked before this and agreed what I would tell his classmates.  Later one he allowed me to talk about his medpor ear too.  He is very happy that I did so he doesn't have to talk about his ear. He doesn't like to discuss his ear at all and is much more comfortable with me to do it for him.  The good thing about this is one mom of a child in his class who I will assume is has a diagnosis on the Autism spectrum told me how her son told her that after I spoke to the class he didn't need to touch Trey's ear anymore because he knows all about it now.  Lesson learned that being open about it is a good way to go.  Trey is in the 1st grade and has had no issues with any comments about his ear or his processor. 

7 months out but learning that even with surgery you still have to deal with the microtia/atresia

Trey is 7 month post his last surgery.  The ear looks amazing.  I am just amazed to how wonderful it looks.  Trey doesn't get asked about his ear but usually if he does it is because his friends notice he doesn't have a hole in that ear. We have had some tough conversations about his ear and he has cried about it.  Breaks my heart.  I want him to love every part about it and know it is okay to be different.  He just doesn't like to be singled out so it bothers him when someone notices his ear is different.  We have always told him he is loved and his ear is special and I try to tell him how cool it is to have something different.  Some kids deal with this so well and for others it is hard.  Knowing what we knew about him at a young age we do think having surgery at 3 was the right call.  Without the surgery he would not be able to escape the questions of his peers when he just wants to play and be like his peers.   I try hard to not think about his ear and I don't want him to be singled out for being different, he just doesn't like it.  But I have learned that I as his parent and advocate will always have to deal with the hearing part. Lately  I have noticed more and more he hears things incorrectly.  He says words that I think he is making up and realize it is that he didn't understand what the word is when spoken or song.  He has had the issue of school friends whispering into his ear and he just doesn't know so they think he ignores them.  Or coaches wondering why he just doesn't do what they want him to do.  Trey would love to have a BAHA but we can't afford one on a softband since it is not covered by insurance.  He does not want surgery so we have decided to not implant a BAHA at this time until he is ready for it.  I think he doesn't like the idea of the BAHA being permanent.  So now I have to make sure we always tell coaches, teachers and anyone else that has to provide him instructions that he can not hear on his left side.  I am learning to be upfront about his hearing it is just I don't think about it as much so I do forget but we do keep an eye on things and watch out for signs that he isn't hearing instructions.  Biggest problem when having a child with a hearing loss is that they don't know when they don't hear something.  I have to be the one to see if he heard me.  Of course he does play that up at times but it is obvious when he is just selectively listening like all kids.  So time will tell what happens with the BAHA.  Right now I am hoping to work with some other parents and advocates about getting hearing aids to be covered by insurance in our state.  I just want anyone who wants to hear to be able to get the power to hear.  It is important and I can't believe it is not covered.  

New ear 2 1/2 weeks post op, looking good :)

Smile says it all. He is very happy about his ear.

Opps, that doesn't look good (for now)

This is what happens to a medpor ear shortly after surgery when a little brother lands on it. We did check with Dr. Lewin and she said it happens. Good news it that less then a week later it looks amazing and better then before the accident. Luckily I know that this doesn't happen each time it gets hit, just when it is still healing.

New ear cup

This is a picture of the new ear cup Dr. Lewin is using, it has 4 straps and stays a lot better then the old ones. No need for skull cap now :)

Pictures of Trey's medpor revision surgery

These are pictures from the morning of Trey's surgery with Dr. Lewin. He really was excited about it, the first picture was taken before the versed, not sure he really needed it but it does help once they go into the or. Aaron who probably won't be happy that I posted his picture, lol.. was able to go back into the or with Trey. The last picture is Trey 5 days post op with Dr. Lewin. The ear is swollen but will be great once it goes down, she made some improvements and lifted the ear so now glasses will fit behind the ear rather then resting on top so in a way this surgery was needed for more then one reason. Trey is happy with his new big ear, had little pain afterwards just a day or so which Tylenol worked well. We went to Disneyland the next day. Trey did well but was in the stroller most of the day which was expected but really he was back to normal by Sunday.

medpor revision surgery

So Trey had his surgery with Dr. Lewin on Wednesday. Yes the medpor was broken, though she thought it was subtle I thought it was more and more obvious since it didn't look the same. It seems it might be a mixed blessing that we had this surgery. His ear dropped more then Dr. Lewin liked and by raising it, it might give it more space behind the ear for glasses or sun glasses. His HFM makes it hard to keep the ear up where is should be so she added a medpor block to help give it a lift. Trey has a lack of bone structure on his affected side so any ear is like placing it on a cliff with nothing under it to hold it in place. Though we were happy with the ear before but this might make it even better plus she raised the tragus and fixed other stuff on his ear. Oh and the best news regarding the surgery so far is that she put the incision behind the ear instead of in front, something she never has done with replacing a medpor but I love it so no new scaring in the front. YEAH...

Trey is doing well, he was able to spend the day at Disneyland the day after surgery, he just rode in the stroller most of the time. He is not in a lot of pain except when the ear cup gets knocked around or mommy tries to see if it needs to be lifted since it looks like it lowered. Mommy has learned to not touch it. .

I am going to write about the surgical experience as experienced by us parents. I am in love with her new surgical center. WOW was it friendly to families. Matthew was able to stay with us the entire time though Aaron stayed with him after Trey was out of surgery, just too much going on that isn't necessarily good for 3 year olds to see and too much for 3 year olds to want to touch. The nurses were so good, the front desk people were so friendly and even changed to waiting area tv for us without us asking or saying anything. It really was a 100% more positive experience and I think for Trey as well. We had a private pre op room with a tv playing Finding Nemo, No cattle herding that always seems to be the point that Trey would start to get nervous. We saw none of that this time. Aaron was able to go with Trey to the OR and he said Trey did great until the mask was put on him but he was out in 5 seconds at that point. Yes I was given the option to go with Trey but seeing him at 18months under anesthesia for his ABR test I was like no way never again so I elected Aaron. Of course he said it wasn't that bad. Funny part is Dr. Lewin was taking pictures for his website or other info about the surgery so Trey was her model and so was Aaron, the person who hates to do that sort of thing had too. So even better. I will add pictures once they get off the camera and hopefully pictures of his new new ear.

Not the news you want to hear

So when you have your child go through an elective surgery you are told of the risks and odds of something going wrong and as we neared 2 years post his first surgery I was starting to forget those problems. Then the odds of something going wrong suddenly reappear and now you are back feeling like where you just began in the process. Trey has a fracture in his ear. This means he will need another surgery to replace the implant. This is not the same as the first first surgery but not as simple as the second surgery. Of course we are not 100% sure it is fractured but I think I am 99% sure. I have noticed his ear looked a little different, that there was a new bump that was not there before. I ignored it at first because there is no problem until you prove it to yourself that there is a problem so why in the world would I try to prove to myself that yes something is different. One night I finally felt it and it felt really bumpy and it felt like it was weak and moved but then by the 100th time I touched the worrisome spot it felt okay but then it didn't look okay but not obviously broken. I looked at old pictures and realized it does look different and I sent the comparison pictures to Dr. Lewin. We spoke on the phone and at first she thought it was fine until I sent her other pictures that better show the worrisome spot. We discussed having her see it but that we can schedule surgery for the next day so we wouldn't have to take 2 trips if we did need surgery. But I am sure it isn't fine. I am just being realistic. However if it is not broken then we will celebrate by spending our days at Disneyland for a few days. Don't worry the boys won't know of our backup plan. Though we will at least spend another day at Disneyland before the surgery as we did before so he has something really positive to look forward too. I asked Trey if he wanted a birthday party with gifts with his friends or a day at Disneyland. At first he wanted the gifts but then decided Disneyland. Good choice if you ask me. :) I have told him he is going to have another surgery. He didn't get upset or anything just asked what Dr. Lewin would do and I just said that while he was asleep she would take out the medpor and put in another one. He is like okay and went off the play. I wonder if he isn't anxious because he knows he had surgery before but little memory of it, not sure but I will take it. I am nervous only for the fact that I am hoping that the breaking of the medpor just doesn't happen again. I know there is always a chance but we were told how durable the medpor implant is and that it takes a lot to break it. Hopefully it is just a one time thing but I am aware of a little boy who has a fractured medpor for the second time. So I am aware it can happen. Though we don't have any good options any more. We can ignore the break but that would risk it harming the skin the flap which supplies the blood to the tissues which isn't good, or we can take it out and later do a prosthesis. I don't like either option so we will go with surgery and hope for the best. Dr. Lewin has been great and now we get to see her in her own private practice and surgical center.

Now I just need a dose of Trey's calmness and things will be good.

One year post medpor surgery number 2

WOW I can't believe it has been a year from Trey's last surgery. What a year it has been for us. New jobs, new home, new state and new schools. As for Trey's ear it has so far stood up to the activities of a very active 4 year old. The ear has been bit by a bug but no swelling just a red spot, and hit by metal gates with no damage. He plays soccer and participated in gymnastics with no injuries to his ear which we hope this all continues to be the case. I will say his ear is very sensitive and when it does get hit it he does cry but he gets over it rather quick with a miracle kiss from me. Moms kisses are amazing at healing bumps and bruises :).

We are more then happy and so is Trey with his new big ear. The nice part is when he just said today "everyone is born with 2 ears" and he started naming animals and cartoon characters and then pointed to his two ears. Yes I have always told him he had 2 ears just one was smaller then the other one but I don't think he would have made such a comment as he did today since he does notice differences now. No I did not correct him because I know he knows that one day he will understand that not everyone is born with 2 of everything but it was a nice moment nonetheless. Trey has been wearing sunglasses all the time with no problems. The sunglasses have become important to him because of the electricity that is in his eyes from his battle with Darth Vader. Got to love 4 year old's imaginations. His sunglasses even helped him swim for the first time. For some reason they gave him power to put his head underwater and start swimming something that his swim goggles have yet to achieve. Before his surgery we were never able to find sunglasses that worked including one with the strap that work so well for others. So you can say we are happy with the choice we made. Do I sometimes think otherwise yes. I met a family at a museum that had ribgraft surgery with Dr. Brent and the boy's ear looked amazing but I also know that it might not have been as good for Trey do to his anatomy and we did what our hearts told us would be best for him. What is best for one child might not be best for the other. I am just thankful we have choices even though it would be a lot easier to not have any since I hate making decisions but as a parent I have learned to make many decisions without guarantee of positive outcomes. I just hope for the best each time and try to stay as informed as I can and I except that I will have always a little doubt in my mind yet I wouldn't do anything different.

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.

5 months post medpor

I still can't believe it has been 5 months ago that Trey got his new big ear. It took awhile to get used to seeing him with his new ear. Now I can barely remember what he looked like with his little ear. His ear continues to heal nicely the color continues to even out. The hair that was growing on it seems to have lesson to the point I don't notice it anymore which is great. We brush is with a soft baby's tooth brush to help get rid of old skin and that has worked really well. He sleeps on it with no problems. He does have a small bald spot above his ear that still doesn't have any signs of hair growing back but it seems to slowly getting smaller, his last hair cute I barely see it. His arm scar is also looking better and better. It is not as bad as I thought and I think by the time he is a teenager it should be light enough to not really notice, besides I figured he could always make up some story so all his friends would want one too. :) Trey is careful on how he takes off his shirts. He loves his new ear and if I tell him that we are going to see Dr. Lewin to help make the ear more like his other ear he just tells me that Dr. Lewin is NOT to take off his new ear. I of course assure him that no, she will definitely not be taking that ear off. I guess you can say he likes his new big ear.

As for the softband BAHA update, we still are working with a local doctor but it seems that his staff changed so helping us get Trey a BAHA has seemed to be forgotten. It has taken awhile to get the new assistant to catch up and start the process with the insurance company all over again. I am going to give it a little time and if not I will try another Dr's office.

the boys

Matthew is now 18 months old and the two boys are just so full of energy and love to play with each other. Matthew is very independent and really has little fear which isn't a good thing at this age. I thought I would post a few pictures of the 2 of them being the cute little boys they are. I especially love the picture of the boys both trying to help their dad pull one of their balloons from the ceiling fan.

4 months post medpor

Wow has it really been only 4 months ago? I can't believe how well his ear has healed. I still admit I had my doubts, the hardest was the first few months, I just couldn't see how much his ear would change. I think seeing these monthly pictures has helped so much. Trey's ear is looking amazing and causing no problems at all. The sensitivity of his ear seems to have decreased, still has hair growing in places it doesn't need to on the ear but that seems to be a little less then a few months ago and really isn't as much as I thought. His hair has grown back as well all except for a spot about the size if a dime. Now we wait for Dec 3rd for stage 2 and to see if we can get a soft band BAHA for Trey.

3 months post medpor stage 1

We are 3 months out from Trey's surgery and his ear is healing very well. The scars are fading and the skin is evening out. His hair is starting to grow back with only 1 spot that has yet to fill in but I am optimistic that it will in the next few months. His ear is very sensitive which is surprising since there are no nerves there,. Sometimes I think he tells me it hurts so I stop touching his ear which I do a lot because I am so amazed at his new ear. :) He does have some hair growing on his new ear but thankfully only in 2 spots, right behind the ear and in the bowl of his ear. I was instructed by Dr. Lewin that I could take tweezers to pull out the hair, well I tried it one time and will never again. The skin just lifted way to much for my comfort so we found a very small electric shaver that can get most of the hair. The hair grows way to much for me to leave it alone. We are hoping during stage 2 that Dr. Lewin can laser the hair so we won't have to deal with it too much.

Right now Trey is in preschool and swim lessons. We hope to get him back to learning how to hockey skate this summer. Hopefully we can get him skating good enough that he can do a league this fall.

Matthew is a very typical one year old. He is starting to talk more and more and tries to play with his big brother all the time. He also is taking swim lessons and loves the water more then his big brother so he maybe our little swimmer.