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.