November 13, 2012

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.  

April 3, 2012

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.

March 22, 2012

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.

March 17, 2012

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.

February 17, 2012

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.