October 25, 2011
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.
Posted by Stephanie at 10/25/2011
September 8, 2011
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.
June 4, 2011
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.
Posted by Stephanie at 6/04/2011
January 1, 2011
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.
Posted by Stephanie at 1/01/2011