November 7, 2010

November 6, 2010

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.

October 26, 2010

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.

October 10, 2010

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.

August 26, 2010

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.

July 23, 2010

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.

June 23, 2010

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.

May 19, 2010

8 weeks post op

We are now 8 weeks post medpor stage 1 surgery. His ear is looking better everyday. It is getting more natural looking though it will never look like his right ear. We figured there will be a scar down the front but as the skin coloring evens out and the ear has more definition it isn't as noticeable. I have to admit the past 8 weeks have been hard, it is a long wait for the ear to really take shape and look good, I was afraid it never would but I am now not so concerned. We are now more concerned with his hearing loss and will be looking at softband bone conduction hearing aids soon.

April 23, 2010

1 month post surgery

We are one month out, and Trey is doing well. The ear is healing but still has a way to go. He has a patch of hair that has fallen out. I think this is normal since I know others have done the same. Now I just try and remind myself that it will take months for it to heal up nicely and for the hair to grow back. But it is an ear and looks great. The ear does change on a daily basis, the color keeps changing it is interesting thing to watch. But the scabs are all off. He no longer is wearing the ear cup at night or during the day. We are still limited to activities but with a 3 year old it really doesn't matter much. We have another 4 weeks before he can do his hockey lessons or swimming but that is it for any restrictions. We do ask him to be careful with his new ear and so far so good. Trey says he likes it and tells me all the time not to take it off. He will do anything we ask if we just tell him Dr. Lewin told us to do it. :)

April 13, 2010

3 weeks out and talked to Dr. Lewin

We are 3 weeks out today and the ear is looking better and better each time we see it. Trey can finally go without the cup during the day but needs to wear it at night to keep him from sleeping on it. The dark colored scab came off today, looks like some little fish took a bite out of his ear where the scab was. Dr. Lewin expects it to have a scar but one that she can fix during stage II surgery. Most of the stitches have come out. We are cleaning it with soft soap and Q tips which is working nicely. I did add some antibiotic cream to the place the scab was just to make sure it heals nicely now. The ear is looking nice and pink. Trey doesn't like to touch his new ear yet. I think he is getting used to it and not sure what to think about his new ear right now. Not looking forward to a stressful day trying to keep the ear safe from Matthew who likes to grab it or Trey who is an active 3 year old who can quickly band his head on anything.

April 11, 2010

3 weeks out dressing change/cleaning

We cleaned Trey's ear this time all on our own today. It is looking great. Stitches are coming out, the dark spot is shrinking and healthy looking skin is seen. I know as time goes it will get more definition but it definitely looks like an ear. Now just waiting to hear back from Dr. Lewin as to what we do now with the ear cup and cleaning procedures. Hopefully the cup can stay off, it is starting to cause hair loss and sore spots but all those will heal up on their own. Then again I want that ear protected so maybe the cup should just stay on until Trey is 18.

April 8, 2010

Story of the 3 Bunny Bears

Trey has his favorite stuff animal, bunny bear, its a bear in bunny pajamas. So Trey has always sucked on the ears of the bear so in time due to the fact it has to be washed frequently we have accumulated 3 bunny bears. Not long ago I noticed each bunny bear had a hole in one of its ears, I thought nothing of it until we added the 3rd bunny bear and I watched Trey tear a hole in the new bears ear. I thought he must want it to be like the other 2 and was just wearing it in faster. Well the interesting part is that he has ripped a hole in each bears left ear, which is the same side of his small ear. Not sure if it means anything other then he likes to eat left bear ears, who knows. After the surgery we gave Trey a new bunny bear and showed him that it has 2 big ears like he now has. He now runs around wanting the one with 2 big ears. Don't worry about the other 3, he told the new bunny bear that they are all friends.

April 5, 2010

3rd post op appointment

Today was our last appointment with Dr. Lewin for stage 1. Trey got his hair washed again and Dr. Lewin cleaned up his ear. The skin sheds and needs help clearing out the old skin so you can see the nice new skin underneath. The only area of concern is the lobe, the dark spot but she felt the skin looked better underneath. She thought the dark spot got bigger but I thought it looked a lot better. She was happy that the lobe was only dark in the upper part of it, as long as it isn't black at the bottom it should heal. We will have to keep adding moisture to the ear in that area for awhile until it looks better which we start that in a week. Right now we start daily cleaning of his "normal" ear where the skin graft was taken, this cleaning will help the stitches fall out as well. The ear cup was put back on and will remain on for another week, at that time we get to be the ones to wash his hair and clean the ear. We will take pictures and send them to her. After that we can use the cup if we feel it necessary but she did give us another ear cup that we can use at night to protect the ear. There doesn't seem to much to worry about but there will be work for us to keep it clean and moist. I am sure in a week I will panic because I will have forgotten everything she told us. If we lived in CA we would be having a 4th appointment with her but since we are traveling Dr. Lewin only had us stay in town for 3 follow up appointments. As for seeing the ear, it was the first time I saw Trey head on with his 2 big ears and to be honest it was a little shocking for me. It had nothing to do with how the new ear looks more that he has a big ear where he didn't have one before. I was a little taken aback by my reaction, though I know the more I see it the more it will become normal. I do miss his little ear but I know we did the best thing for him. So glad I got a lot of pictures of him before the surgery, I will always cherish his little ear and so glad I know its still there as his lobe. I think if we lost the lobe I would be crushed. The pictures of Trey's ear were taken before the cleaning, I didn't get a picture of the ear after but it looked a lot better, lots of stitches came out and the uneven color spots of the ear improved. He looks unhappy in the picture because he woke up from napping in the car and was not yet awake. One good thing was Trey got a lot happier at the end of the visit because he got to meet another young boy who just had surgery after Trey and they looked like twins with their Nike caps and ear cups on. I think it was really good for him to see another boy dressed like him. I will post more pictures of his ear once we get some.

I also wanted to write about the arm where she took the skin graft. It is still taped and bandaged, since the skin is tight because so much of it was removed.We will have to keep tape on it for about 4 months. We will keep it wrapped up for as long as possible so he won't take off the tape. I guess the reason for taping it for so long is to help keep the scaring down since the skin is pulled in tight and is pulling away from the scar.

April 4, 2010

How we made this surgical experience also a vacation

With having to stay in CA for 2 weeks after the surgery and it only taking Trey 3 days to feel good enough to start being his active 3 year old self, we had to do things to keep the boys busy and mom and dad sane. The 2 days after surgery Trey just watched movies, he hardly ate anything and slept without having to work any energy out. Day 3 came and he started to not want to watch movies and ate normally. We found that the Santa Monica 3rd Street Promenade a great place to take him to walk around. They have bushes shaped like Dinosaurs which he loved, it was a great way to let him run around but when he was tired he rode in the stroller with his brother. Santa Monica also has a really nice farmers market on Wednesdays near the promenade. We also took the boys to the Petersen Automotive Museum in Beverly Hills, close to Cedars. Great place for boys since it is just full of interesting cars. We also visited the La Brea tar pits in LA, just down the street from the automotive museum. The park is free but you do have to pay to visit the museum. It was also a good place to let an adventurous boy run around without to much risk of hurting his new big ear. We also spent 3 days at Disneyland. We did not go 3 days in a row but rather every other day and made sure the weather was good since Trey can not get his ear wet yet. By the time we went, Trey had all the energy in the world for an all day visit. We were able to go on many many rides that he loved. We also got a pass at Disneyland that allowed us faster access to the rides so we did not have to wait in long lines, if you plan to go after surgery get this pass at city hall in Disneyland. We have also found local parks where we can walk to and let them both run and kick a ball around. All fun and not as dangerous for the ear as letting him bounce off the walls and furniture at the apartment. My goal was to have him have lots of fun memories about getting his bigger ear. I am hoping we accomplished that goal but only Trey and time will tell us. As for me I will always remember this trip as a great thing that Trey got his bigger ear and a wonderful family trip to Disneyland that also included our first earthquake. Aaron wasn't as excited about the earthquake since he lived in CA before and has felt many.

March 29, 2010

Dressing change, glimps of new big ear

Our second post op appointment where they did a dressing change, removed stitches on the ear cup and sponge and washed his hair. Trey is such a good patient. Nothing has bothered him, while the doctor and assistant did their thing he watch Cars and ate raisins so he was happy. He got to pick out a new arm bandage since that was replaced too, he had a tough time selecting a color since he had several to pick from but in the end he went with the yellow bee wrap, surprised mommy since he loves red but I think since Dr. Lewin talked about the bee's he instinctively picked that one. The ear looks good at least Dr. Lewin told us so. She said she had no worries at this point and was pleasantly surprised to how well his little lobe was doing. She told us she was worried how his little ear would do since she had to move it so far back and she feels it looks better then she expected. Good news in the end. Trey still is wearing the cap to keep his ears a little more protected. He is doing well not touching his head except he is scratching the back of the cap a lot now so we have to watch him more. He is almost back to his old self, not getting as tired as easily but doesn't have the stamina to go all day without a nap, last part is good for mommy and daddy. We will post pictures next Monday hoping Dr. Lewin sends us the pictures she took today. It's hard to believe he has 2 big ears now and he still looks like Trey. :) Stage 2 is scheduled for December of this year. At least that will be only 4 hours and not 12.... hopefully.

March 27, 2010

pictures from Dr. Lewin of Trey's new Big Ear

Just some pictures that Dr. Lewin took during surgery. You can see the new big ear with all the skin grafts, Trey's bunny bear keeping watch for mommy and daddy and Trey with the anesthesiologist who was really great with him. Trey is doing really good, almost 100%, I would say the only difference is he doesn't have as much energy as usual but getting to have a little to much for our comfort. He also woke up a few times last night looking for his daddy even though daddy was sleeping in the bed next to Trey's bed. We all took a walk to the local farmers market to keep him busy without risking hitting his head, unfortunately I think Daddy and Mommy got worn out and not the kids. But life is starting to feel a little normal but I do have some anxiety that he is going to bump his ear before it's healed. We get the first dressing change on Monday and then we start to learn how we have to care for it while it heals.

March 26, 2010

Drains are OUT....

We finally got the drains out. They are not to bad to deal with but the more active he got, the more his younger brother wanted to pull on them. They look like a cool toy to a 1 year old who has no idea what he is playing with. There was absolutely no pain in the removal. We did give him regular Tylenol before we left but not sure if it was needed at all. He is eating more and more and has more energy. We took a walk as a family down by the beach, Trey wanted to ride in the stroller instead of walking which is not like him so we are not yet 100% but very close. Now we need to make sure he doesn't play to hard so keep his ear safe.

March 25, 2010

Day 2 Post Surgery

Day 2 and things are still getting better. Trey has said his arm hurts so last night he got his pain meds and he slept until 7:30am this morning. He is really shaky but I think it is a combination of not eating any real food and anesthesia. He did eat some ice cream, grapes and cheese, he still has a very low appetite but this is all to be expected. His eye is starting to swell which is expected and very normal. You can tell his energy level is slowly picking up, he is moving around more but then quickly goes back to sitting in his chair to watch a movie. We plan on keeping him inside until he starts to eat a little more which we hope will be tomorrow. So now its Disney movie marathon day 2. We bought more movies for him to watch because mommy and daddy needed some variety. So far so good, we get the drainage tubes out tomorrow and I guess that can be a tough time because it is probably the most painful of all this. I am planning on making sure he has some Tylenol in his system before the appointment. He has left his hat alone and doesn't like it when we touch it so he knows it is to be left on and this is a huge relief for us. He tried to rip off his hat and bandages during recovery and he ripped the hat of his bunny bear the nurses put on it so we were very worried. On cute quote from Trey when mommy asked him what movie he wanted this morning " I want to start with Cars" so I think he totally understands he gets to watch lots of movies today, not sure when mommy and daddy will start to ween him from the movies probably when we stop feeling bad for him.

March 24, 2010

picture of Dr. Lewin with Trey

Just before surgery we got a picture of Dr. Lewin with Trey. Trey is playing with the syringes that had is Versed. He drank it like it tasted good which surprised the nurses. Dr. Lewin is amazing with kids, Trey kept asking to leave the pre op area until she arrived and before the versed when he became really relaxed. I Only wished they gave us parents some of those calming meds too. Oh and for the sentimental part, it was the last pictures of his little ear. Can't wait to start up with pictures of his 2 bigger ears.

Day 1 after surgery

Trey is doing really well, better then I expected. He is tired, has had some pain last night but easily controlled with the pain meds they gave us. He hasn't asked for pain meds since this morning so that is a great sign. He so far has not touched his cap and drains which we were nervous about. Thankfully though the drains will be removed on Friday. He has been watching movies since 4am and is still not steady on his feet but over all no pain or discomfort just recovering from anesthesia. As you can see in the picture he is watching his videos but you can also see he is wearing a cap and 2 drains are coming out. His left arm he has a bandage where they took the full thickness skin graft. His other ear also has sponge in the back because they took a skin graft from behind it and replaced the skin with graft from his arm.

March 23, 2010


We are finally home, Trey is really sleepy, not really with us and we expect that for a few more hours but he may also sleep through the night. In regards to the ear the pictures we saw look great and we can't wait to see it for ourselves. It was technically more difficult for Dr. Lewin but she said she was able to do what she wanted just took piecing his skin on his ear like a puzzle. Now we just have to keep him from grabbing at his hat, he did that as he was waking up but I am hoping he knows it has to stay on for long time. Let the healing begin.

Dr. Lewin update number 2

Dr. Lewin called at 3:45pm which is so nice to actually get to talk to her rather then the nurse. She wanted to make sure we knew that everything was okay but it was taking longer then expected. His hemifacial microsomia made placement of the ear difficult but she is happy with how its turning out. She got a large membrane flap that was so big it also filled in his cheek which is better then fat injections. She unfortunately could not use his little bit of ear cartilage to create a tragus because an artery was directly below it so it was safer to remove it completely then to move it. He also got a face lift. Yes that is correct my 3 year old had a face lift in Beverly Hills, CA. Sometimes you just have to laugh at these things. So we are looking at 12 hours of surgery for Trey today. I expected 8-10 but I know he is in good hands. Actually Dr. Reinish her partner and creator of the medpor ear reconstruction said the ear looks good. Not sure how he saw it since he was in surgery during the same time but then again you just assume he would check on her. I do know she tends to take longer with her surgeries then Dr. R but he has had more years of practice but I like to think that she is that more of a perfectionist.

Dr. Lewin calls from OR

I LOVE Dr. Lewin. She called from the OR, its about 11:30, the surgery started at 7ish. She said he is doing great, that she was a little nervous about his facial nerve but it wasn't an issue which is excellent to hear. She said everything is going well that Trey is doing his part with good anatomy. She said the stressful part for her is over and now its about putting him back together. Okay not the phrase any parent wants to hear but I was able to joke about it with the doctor. I love Dr. Lewin. At least he is half way done. Now if I could finally stomach some food I might start to feel better.


We arrived at the outpatient surgical center at Cedars an early 6am this morning with a very sleepy little boy. He was a trouper and only started to get nervous was when they called us to go back to the pre op area like a cattle herd of people and it the pre op room was set up for well for the nurses but scary for a 3 year old. Our pre op nurse didn't have the greatest gift of working with kids but after they gave him Versed with made him very loopy he seemed to not care, well enough he seemed happy but still refused to take off his shoes and put on the hospital pajamas. Dr. Lewin was great, Trey really liked her and he was happy to see her again. She was happy to have her favorite anesthesiologist today which is always a good thing to hear. The anesthesiologist was great with Trey, she carried him to the OR since he wouldn't lay down on the bed and gave him cookies that he could hold until after the surgery. Of course I assume he won't be holding it the whole time but to him he will be. We bought a new bunnybear, Trey's favorite teddy bear that he chews on and has eaten the ear off of each one of them. Yes we have 3 because we have to wash them all time because it just smells. They will give it to him with a bandage on it like him and then he will see his bunnybear will get a new bigger ear as well. It was one of the few things we could do for him. It was really hard to kiss him goodbye but I know it will be worth it in the end for him. We will be waiting during the surgery in the waiting room that isn't really set up for long waits but at least I have company of parents whose son is going through the same surgery as Trey. Unfortunately for them it is not the first time through this but we are hoping both boys now will have wonderful outcomes.

February 26, 2010

First ear question from a friend

A little girl in our playgroup asked Trey about his ears. She asked why one was bigger then the other. I just simply told her that he was just born that way. Trey immediately repeated my answer then he started to talk about him getting his bigger ear. Great thing about kids is that they don't care once they get an answer. She said oh and continued to play. Trey is to young to care right now that he gets these questions. I am not bothered by the questions, just a little sad that we are finally getting to the point that kids he plays with now notice. I hope his surgery goes well and he will be spared from having to answer numerous questions about his ear. I am sure there will be some just hoping to keep it minimal. I will teach him to be honest and polite and that people are naturally curious and that it is okay for people to ask as long as it is in a kind manner.

On the lighter side

Matthew is starting to walk more and more. Mostly 2-4 steps but he does it throughout the day. I can hardly wait until he is no longer crawling. Yes I do know that I will chase him but I already do and it would be nice to pick up a child who is a little more upright.

January 27, 2010

Cranio technologies DOC band

I keep forgetting to write about one thing we did do for Trey early on and that was to get him a DOC band (helmet looking thing) when he was 6 months old. Trey's head was misshapen from birth, I noticed it early on and was told many times by our pediatrician his head would be fine but it never changed. His head on his affected side seem to be larger and that was with looking down so it was not do to the microtia or HFM. I found Craniotechnologies here in Phoenix and requested a referral. This was something I didn't want to do and to be honest it was for selfish reasons. I didn't want people to think I was a bad parent thinking I let my kids head get flat though I know that is not what happens. But honestly it was the best thing we did. He only had a mild case but enough that our insurance company would pay for. It gave Trey more symmetry to his face by making his left eye appear smaller, it was always bigger and I swear he was never able to close his left eye all the way (lots of eye infections that miraculously stopped after the band). I did read in one article on HFM that many kids will have some plagiocephaly (medical term for misshappen skull), usually a flattening on the skull on the affected side above the eye. This was one of Trey's issues but the main reason his left eye looked larger. Though his plastic surgeon did not feel it was related, I am sure it is. I have seen pictures of to many kids with HFM whose head shape looked like Trey's. The band was so easy and the people at cranio technologies were wonderful. Of course the band had another side effect, it brought attention to him. I had to get use to people asking questions or making comments. I really don't mind, I am all about educating people so when I am asked questions I get that opportunity. My motto is if you have a question, just ask I rather give you my answer then you just coming up with your own right or most likely wrong. Trey was also diagnosed with torticollis, he holds his head a little to the side, we did physical therapy at home with instructions Craniotechnologies provided us. I am sure we didn't do it enough because I still see it today especially when I take pictures but so far I am not sure it is a problem or will lead to one, well lets hope not.

Did we know about microtia before Trey was born?

I have been asked this question before and have heard others wonder the same thing on the yahoo group message board. Did we know before Trey was born, sorta. We had a 3D ultrasound performed when I was 27 weeks pregnant at one of those private ultra sound places. The tech noticed the ear but was not able to tell us since it was for "entertainment" purposes only. Thankfully she informed my OB of what she had seen. I was not told of the possible ear issue until I saw my doctor 2 weeks after my ultrasound. I got my doctor to agree to further ultrasounds but by that time Trey was head down and laying on his left side, the ear in question could not be seen. I went through many emotions at the thought something was wrong and we wouldn't know for sure until the birth. I cried that first night. I looked at the 3D images and convinced myself they were wrong of course they look just like his ear. The interesting part is a week before my due date I saw a show on plastic surgery and it was about a boy who got a new ear with Dr. Reinisch. I then realized this was ours and Trey's fate but I at least knew there was something that can help and that gave me hope. Knowing ahead of time that something might be wrong was hard but a gift, I was able to deal with my emotions before hand and come to terms that we may have to face things we weren't planning on. I was not however prepared for the jaw issue and the words syndrome. But once we got a grip on what it was exactly we were dealing with I became so thankful it wasn't worse but sad Trey was going to have to deal with things you never want for your child.

January 24, 2010

Lets not forget Matthew

So Matthew is our baby of the family though he is hardly a baby anymore. But since he is not walking yet but working on it, he is still my baby. He just turned a year old last week. I can't believe how fast he is growing. He is starting to want to walk, cruises around all the time and I am sure he "thinks" about taking those first big steps but just not yet. I am trying to encourage the walking, I am not one for the crawling stage, I have always enjoyed it when they can finally walk. Now if I can only get a good picture of him. Between the falling, being knocked down by his big brother or being accidentally carried into a shelf his head is constantly bruised. But we are going to try and get his one year old pictures today. Lets hope the boys had a good nap and are happy for the pictures.

Our Choice: Medpor

So after going to the Let Them Hear Foundation annual Microtia/Atresia Conference in October we have decided to go with ear reconstruction using medpor implant. We met with Dr. Brent, Dr. Reinisch and Dr. Lewin. All doctors are passionate about what they do. In the end my husband and I agree that we both felt medpor was the route we wanted to go and to go with Dr. Lewin since she accepts insurance. So the next question was when. I knew we can do it at age 3 but Aaron wanted to wait until 4, no real reason why but just thought we can wait. I spoke to Dr. Lewin on the phone for a half hour and asked lots of questions. She was so wonderful to talk to and assured me that 3 or 4 did not matter but that the earlier they do the surgery the kids just seem to bounce back faster and complain of less pain. She also mentioned that there are surgical advantages in doing it younger. Next thing we knew Trey's surgery was scheduled for March 23rd, just 2 weeks after his 3rd birthday. She was booked up until June and we wanted to try and get the second stage surgery in on the same calendar year and doing it in March versus June gives us that. Just saves us lots of money since our insurance is (I am hoping) going to cover it and one surgery will get us to our out of pocket maximum so the second surgery shouldn't cost us except for travel expenses.

So we are off to Cedars Sinai in March, we will have to stay in town for over 2 weeks due to follow up appointments. The surgery is expected to be 8-10 hours long but is an out patient surgery so he will come home that day. Pain should be minimal from what we are told, usually from the skin graft sites which will be behind the good ear and either from the scalp or groin area. Our hope is that it be a positive experience for Trey so he won't have anxiety over future surgeries for his jaw ( we expect 1-2 jaw distractions) So our plan is to go to Disneyland a week after the surgery. From what I have heard from others who have already done this journey is that it is possible. So that is the plan.

Right now I am doing my best not to think about the surgery and how Trey will look different the moment he is done. I hope he always knows that we feel he is perfect as he is and the surgery is not about "fixing" anything but we know that most likely one day having a small ear will probably bother him and that one day he will need glasses and living in AZ he needs to wear sunglasses. Straps don't work well for him to keep sunglasses on. Those are just a few of our many reasons to do the surgery and we right now can only hope for the best. Right now we have him talking about going to Disneyland after he gets his bigger ear. YEAH for Disneyland.

Microtia options

So in regards to his left outer ear, we have 4 options. The first one is of course do nothing. Second is prosthesis. A third option is rib graft surgery which is done at age 6 or 12 depending on the doctor and the technique used. The forth option is surgery with a medpor implant. All options are good options, not one option is better then another just different. Important factor is when deciding on surgery is to go with a doctor who is very experienced in this surgery. I asked each of our local plastic surgeons who they would go to if it were their child it helps to know who other surgeons think are the best. Rib graft is the surgery most commonly used, many surgeons are not familiar with medpor so they will not recommend it since it is relatively new like the past 15 plus years.

I bring up the part about medpor because that is our choice for Trey. For us medpor can be done at age 3, I personally like the medpor ears over rib graft. I also like that it is not as invasive as rib graft since they do not use the childs rib cartilage. We were opting for prosthesis but we didn't like that the color fads in time and it has to be replaced every 2-3 years. I know of families who have chosed each of the choices and they chose what is best for them and their child. Some wait until the child can make the choice and others make the choice for their child, it all depends on what factors are important to you and only you. That is actually what makes this all hard, there are no right or wrong choices, each has pros and cons. We have no crystal ball so we go with what we know at the time.

CT scan

So this is just a post to write what we learned about getting a ct scan. First try to do it without sedation. The scan takes no more then 5 minutes and if they can't lay down still, the nurses will burrito wrap your child. Trey was wrapped and screaming most of the time during the scan, but I would take that then having him sedated which is what we went through with the ABR. It might sound traumatizing to the child but really its not, he was calming down right before it ended but since the scan itself was so fast the crying didn't last long at all. I am sure some kids won't cry, no pain just laying down on a bed that moves a little. I was able to stand next to him the whole time. They also used toys to distract him while the scanning was going on but that is because we had it at a hospital where they have child life specialist whose job it is to help kids get through such medical tests. We also requested a copy of the scan and got a 3D image as part of the report on a cd. It was interesting to see how things are underdeveloped but sad at the same time.

Finding support and information on atresia options

The hardest part is finding out nothing can be done until Trey is older. As a parent I just wanted to do what I can and as soon as I can but I have had to learn patience which isin't the best thing for me. Thankfully I found a yahoo group support site for microtia and atresia. Since many kids who have microtia and atresia also have HFM this group site provided so much needed information on all levels that we needed.

We found out our choices in how we can address these issues. For the atresia we could do a BAHA (soft band or surgically implanted), canalplasty(creating new canal and fixing middle ear) if a good candidate or of course nothing. To begin this process you have to do an ABR test to make sure the affected ear has only conductive hearing loss, if the nerve is not functioning not much can be done. A ct scan can be done to determine if atresia repair surgery(canalplasty) is an option. Very complicated surgery and the best doctors will review ct scans for free. CT scan should not be done before age 2 1/2 or you risk having to do it all over again, child needs to be big enough for the inner and middle ear parts to show up. Unfortunately the ct scan showed Trey definitely is not a candidate. Not surprising to us, he had less then 20 percent chance to be a good candidate because he has HFM/Goldenhar (side note, we prefer HFM but officially he is diagnosed with Goldenhar, the geneticist who diagnosed him considers HFM to be the same as Goldenhar while others differentiate Goldenhar for when the eyes have dermoid cysts or skin tags, all of which Trey doesn't have)

We can do a BAHA (bone anchored hearing aid) that could be used to provide some hearing since his inner ear (the nerve) works. There are 2 options with that, one is a soft band type that goes on with the use of a band that sits on the skull, no surgery and it can work well, just that it is very expensive and our insurance will not pay for it. They would pay however if we had the same device surgically implanted.

We have elected to wait and see if it would be useful or needed before we do that surgery. One doctor in town would have done the BAHA surgery already, I kinda freaked out about the permanent of the surgery and that the doctor didn't seem to care if the posts goes to far into the skull and rests on the outer layer of the brain. Infections are not uncommon with the posts of the BAHA so I am just not ready to go for it. We tried a softband that was loaned to us by the audiologist but Trey would not keep it on for any longer then a few minutes, of course he was only 18 months old and he knew he had complete control over if he would wear it or not. Maybe in the future we could try it again.

The begining of Trey's story and ours.

When our son was born we began a new journey into parenthood that included the journey of dealing with Goldenhar/Hemifacial Microsomia with microtia and atresia. What all that means for our son in plan English is that one side of his face did not develop normally so his left side appears smaller and his external and middle ear did not develop on that side. We had no idea what i all meant except that he looked different so our journey began.

Starting at a week old we had medical tests to make sure his eyes, kidneys, spine and heart were fine and thankfully they were. So all we have to address is his lack of external ear, unilateral hearing loss and a smaller jaw. We see an ENT doctor 1-2 times a year to make sure his good ear is working fine. We had to go do and ABR hearing test to verify the hearing on both sides after he was a year old which meant he was sedated. If only we knew to do this test when he was an infant where they do the test while the baby sleeps so no meds to knock them out. We didn't like our first ENT who wasn't much help to us but love Dr. Mancuso our current ENT. We also see a craniofacial team that will address the ear and jaw issues. We know Trey will require jaw distraction surgery and lots of orthodontics work. So we also see a dentist who is part of the craniofacial team.

So far Trey is a happy 2 year old who has not shown any problems. His speech is normal and he is happy and very very active 2 year old. He is social but can be reserved especially in noisy environments which is not surprising since he can not locate sound well. Around age of 2 he started noticing the differences in his 2 ears but did not seem to care which I would also expect do to his age. Sometimes he doesn't hear us when we try to get his attention and other times I am sure he DOES hear me but ignores me, again age appropriate behavior.