Now that it's been two years since the last posting...

Hello!

It's been almost two years since my latest post, and I decided to check up on this blog to recall what we went through.  Ben is now 11 years old (how time flies!)  We have now lived in Singapore for almost four years, and we are loving it.

So how is Ben doing?  Let's see...at the end of the 2015 year, Ben received an academic award for ranking #3 in his class (Singaporean schools rank students - an aside: according to the latest (2015) Organization for Economic Co-operation and Development (OECD) Program for International Student Assessment (PISA) results, Singapore's 15 year old students rank #1 in the world (of 72 countries) in all three subjects tested, math, science and reading).  Ben also won a school "Colours Award" for his leadership and teamwork on the school basketball team.  He was captain of his school basketball team, and they won the "South Zone Championship" and then made it to the national semi-finals where they placed #3 in the country.  He continued to play soccer for the ANZA (Australian-New Zealand League) where his team won both the "Cup Championship" and the "Trophy."

One of my favourite "every day moments" here in Singapore was when Ben's math teacher, a stellar teacher who studied in Des Moines on a Fulbright Scholarship, wrote my husband and me an unsolicited note about how much he enjoyed teaching Ben and about how the US needs more young people like Ben.

Fast forward to 2017.  Ben is still a school prefect and still captain of his school basketball team.

After months of tournament playing, Ben's senior boys team is one of two teams nationally that is undefeated, and his team has made it to the national championship game.  The game is happening later today.  It'll be the last game of 3 1/2 years of a lot of fun and camaraderie on the team - I know Ben will miss his teammates a lot.

This year, Ben is also preparing for going to "secondary school." In the Singaporean local system, all student leave "primary school" and have to apply to "secondary school."  Admissions are 100% merit-based.  Students can be admitted based solely on "results" (their ranking) on one national exam that all sixth graders are required to take.  It's not like the SATs where students can take the test multiple times.  No re-takes and basically no excuses for absences.  Each of the ~ 40,000 students is ranked.  Students submit their ranked preferences for schools.  Then based on how the students performed on the exam and what schools the students indicated as their preferences, the students are placed into a secondary school.  It's a gruelling process - and quite stressful for the students.  Students can also be placed into some selective schools based on a "talent" such as sports, the arts, a musical instrument or another talent.

Ben with his (new) baby brother.

Although Ben could gain entrance to schools via his national exam results, he will go to tryouts at some of his top picks in waterpolo (one of his favourite sports) as well as basketball.  Unlike in the US for college admissions, Singaporean schools' admissions processes don't give any credit for "hardship" or "having an interesting story."

I don't know how all of this will turn out for secondary school admissions, but we think he's got a solid shot at his top choices due to his academic and athletic achievements.  What's the point in sharing all of this besides unabashed bragging and pride?  It's basically to say to any worried parents out there - especially if you are cradling your newborn kid with microtia for the first time or wondering how your toddler with microtia will turn out: "Your kid will be just fine."

Ben's right ear - taken at haircutters.

Ben wears his hair very short.  He still gets comments like, "Ew.  Your ear looks like rotting flesh."  Or "What's wrong with your ear?"  Or "What happened to your ear?"  Or "I don't want to sit next to your ear."  Ben recounts these stories in a matter-of-fact way, sometimes even chuckling as he recounts them.  My heart doesn't sink the way it used to when I heard these stories.

He has learned to deal with these comments very well.  Mainly, he shrugs them off.  Sometimes he explains that his ear had surgery.  His best friends don't care.  He is a well-liked kid - and he certainly doesn't let his ear slow him down.  He is a driven, focused and goal-oriented kid.  He puts his mind to something and succeeds.  He doesn't waste his time playing video games or television.  His ineptitude with an iPhone and iPad is anachronistic.  He is a nice kid - never petty, bullying or mean to others (except his occasionally his younger brother).  I often wonder if his ear has anything to do with any of this.  Whether or not being born with his microtic ear has anything to do with him being a good kid, I'll never know.  But I do know that, like your kid, he's turning out just fine.

Before and After Photos

This is the before and after photo comparison that I wanted to see when I was looking into the topic of surgical repair years ago.  I wanted to know what does the ear look like post surgery when it's in its "steady state."  Here (left) is the microtic ear at 6 months (or so)

BEFORE (LEFT) is Ben's right side microtic ear from when Ben was about 6 months old.

The other photos are all of his surgically-repaired right side.






At 9 years, his surgically repaired right side, about four years post surgery.

Wow - It's 2015! Almost Four Years Post Surgery!

At the Musee Rodin last year

With Dexter in February

To give you an idea of how this goes, it's now several years later and I haven't visited this site in years.  It was really fun to review what we went through - it seems like a lifetime ago.


Some updates...

Ben is now a confident, sweet, handsome and athletic nine year old who is a dream kid - gets good grades, enjoys reading, is a school prefect, loves every sport possible and has an enormous heart.  We rarely talk about his ear.  When he really wants to hear you, he turns his left ear toward you.  If it's a movie, he puts on his BAHA.  He doesn't usually think to ask for it, so I'll approach him and ask him if he wants his BAHA, and he nods.  He does this whether or not his friends are present.

Two years ago when he was seven

At school, he doesn't wear his BAHA - he does sit in the front row in every class.  Most of his friends are aware that his "ear had surgery."  He went through a few years when whenever he was in a new situation (e.g., new soccer team, new class in school, etc.) there were some kids who would point to his ear and tell him his ear was ugly.  But he's used to it, he has his good friends, and he has said to me, "I'm proud of my ear."

We moved to Asia a couple of years ago, when Ben was in second grade.  We entered mid-year through the school year, and my kids didn't know anyone in the school (or the country!)  They made friends immediately, and like in the US, some friendships stuck and others didn't.  Ben has a handful of good friends - all sports jocks like him.  It helps that he really enjoys and is good at sports.  If you're on the basketball court, soccer field or swimming pool, no one cares what your ear looks like.

In March of this year

How does his ear look?

It looks fantastic.  I'm still always worried that the frame will break again - especially since Ben is so active and involved in every sport possible: soccer, baseball, tennis, water polo, swimming, basketball, downhill skiing, running, golf, etc.  But since that time that it broke a number of years ago, it's been fine.  We live in a tropical climate, so I slather the sun block on his ears every time we go outside.  Also, I'm really "aware" when there might be mosquitos out there.  These are the types of things I will always be on alert about.

The actual skin on his repaired ear is a little waxy / seems thicker, a little darker and less pink and supple that his other ear - which makes me think that it might have been worth it to do the balloon-in-the-cheek that Dr. Lewin had recommended when he was four years old.  It's so silly because now that I reflect on it, it wouldn't have made any difference for him to miss school during that time.  But at the time, it seemed more important for him to not miss the school, so 20/20 hindsight, right?

The skin on the inside of his ear canal is a little sensitive, and I think it may always be like this - not entirely smooth.  It's ok - I get a little baby oil and rub it on the ear canal every once in a while - it helps clean it and get the extra skin out of the canal.

The shape, size, projection and shadows of the ear are perfect.  There is no question that I'm glad we did the ear and the canal reconstruction.

In terms of whether he can actually hear out of that side, I think that the ear still has quite a bit of hearing loss - maybe it helps the tiniest bit with directional hearing, but if he really wants to hear you, he turns his head.  Why am I happy we did the inner ear reconstruction?  I would never have known if it would work (otherwise) and it gives the ear much better definition to look better.

Hearing aid devices?

Swimmer and water polo player

The ESSO insurance ran out and they stopped the insurance plan, so we don't have that, but we DO have the old BAHA that still works.  As mentioned earlier, we still use it whenever Ben watches movies.  We don't use any other devices.  We had briefly considered getting one of those hearing aids that gets plugged into the ear canal, but the doctor (I forgot which one - maybe Roberson) said that we shouldn't do it because the canal could get irritated.  Also, Ben seems to be used to not having the hearing aid at school.

How is he doing academically?

Loves basketball

Flying high

Great!  He has the greatest way of talking and putting sentences together.  Linguistically, he's always been a funny kid, so I don't know if he's that way because of who he is (like me) or because of his hearing.  In any event, he's been learning intensive Chinese (Mandarin) since he's been in Kindergarten, and he can speak Chinese pretty well.  His English vocabulary is solid.  He turned a corner in the last year or so and reads voraciously.

Math is his strong suit and he has an intuitive sense for math.  Learns quickly and "gets it."

Behavior-wise, he went through a phase when he was ~ 5 years old (I don't know if I mentioned this back then, but he got kicked out of the after school program for kids), and I got a call from the math teacher last year that he was fooling around too much with his best buddy when they had finished their class assignment early, but now - he's a dream kid.  Selected as a prefect at his school, co-captain of his school basketball team and a strong performer academically.  Also, at home, he's incredibly considerate and thoughtful to the whole family.

So there you have it - best of luck with all of your decisions.  Believe me, I've been "there" when underlying every thought I had was my concern about Ben's ear.  Now, I hardly ever think of it...

One Year Anniversary From Microtia Repair

We celebrated the one year anniversary of Ben's microtia repair last month (July 18, 2012 to be exact).  I guess it's a good sign that it was nearly a non-event.  I think we mentioned it to Ben that we were celebrating the one-year anniversary and he said something like: "Oh."

Wow - what a difference nine months makes.  For one thing, it's been so long since my last post that I'm not so familiar with how to add and edit posts to this site.  Since last November, a lot has happened, including:

• Ben completed 1st grade in a Mandarin Immersion program - and he did well academically despite the fact that he's one of the youngest children in the class and has partial hearing loss
• Ben passed/received the Mandarin "Sprouts" Children's Chinese Certification (it's a bilingual certification test administered by the Taiwanese government
• Ben resumed swimming lessons this summer, was in the pool nearly every day and is doing the crawl, backstroke, breast stroke and butterfly
• Went through a season of soccer (during which he had a follow-up atresia repair with Dr. Roberson), a season of baseball and he's in the throes of a summer league in basketball.
• We returned for a one-year anniversary "check in" with Dr. Lewin who after a brief stint back with Children's Hospital in Los Angeles is now in a private practice (and no longer in practice with Dr. Reinisch).  Dr. Lewin was very happy with the results and impressed by what the NewGel did for his keloids.
• Endured a minor ear infection from all of the swimming which was addressed through Ciprodex (this link is the exact thing that has been prescribed for my boys every time they have an ear infection).  As a side note, Ciprodex is incredibly expensive - it's this minuscule bottle for about $200 - so if you have a prescription policy that fully covers your meds, you should "stock up" on this medicine for a rainy day...

 



Microtia Repair (Right) Ear





Non Microtic (Left) Ear

Went to Dr. Gene Liu (ENT) for a check up and cleaning.  Dr. Liu recommended that we use the over-the-counter "Swim Ear Drops" product after he swims so that he can minimize ear infections due to swimming. 
• Got several audio tests (including with Dr. Frazer at Pacific Specialists - Eye and Ear and Dr. Roberson's office) where it was determined that Ben is doing fairly well (Dr. Roberson said he was quite pleased) whereby Ben still has some hearing loss, but his hearing in his right ear is much better
• Received a Cochlear BAHA 3 via Dr. Frazer's office - the new BAHA is a little bigger but works much better than the previous version
• Consulted with Dr. Roberson about getting Ben fitted for an interior hearing aid, and he indicated that he would advise against it, so long as Ben continues to do well in school.  He said that the fitted hearing aids that go inside the ear canal can create more problems, so if he can hear OK, it's better to leave him alone.
• Ben continues to sit in the front row in his classes so that he can hear better, but participation in his classes continues to be a challenge.
Also, after November 2011, while Ben's new ear was developing keloids, we immediately used NewGel on his ear every night.  We purchased the NewGel adhesives as well as the gel in a tube, and in the end, we liked the gel more because it seemed to "stay on" better.  The NewGel (silicone-based) was pretty expensive, but it seemed to work well.  It was cheaper to purchase it through Amazon than to purchase it directly from the NewGel site.  We did that for about four months, including during a trip that Ben took with my husband to Argentina.  Then, we stopped after around March, we stopped.  The results were that the keloids did not get any worse, in fact, one went away completely, and the others diminished substantially such that a stranger wouldn't think there was anything going on there.

Another important update is that Dr. Roberson is no longer "in network" for the insurance companies that we used in 2011.  Financially, that made a big difference to us.  Without a doubt, we would have used Dr. Roberson regardless of whether we would have had to pay out of pocket.  Dr. Lewin continues to be part of a number of networks, and she also takes MediCal patients, which she does specifically because she wants to be accessible for patients regardless of their economic backgrounds.  She's an amazing surgeon and person as well.

The upshot is...that after a year + of lots of anguish and surgeries, we think we made the right decisions regarding both the microtia and atresia repair for Ben.  Ben's new ear looks great, allows him to wear his hair short with confidence, and he hardly ever mentions his "little ear" or his "surgery ear" now.  Previously, his ear was always on his mind.  We would go to new places or meet new people, and he would be self-conscious about his ear and his hearing.  Now, his ear rarely comes up.  It has opened our eyes more, though, and we meet other kids on a regular basis who have hearing loss, some of which is from microtia.

In fact, Ben had several situations recently (new camp, new exchange student living with us, meeting new friends) where his microtia atresia has not come up at all.

Take a look at Ben's ear - yes - this is the surgically repaired one.  Sometimes we're looking at it and assuming that it's his left (non-microtic) one.  It looks great.

Four Months Post Microtia Repair

It's been four + months since the microtia repair, and after a fantastic initial result, we've had a few road bumps including:

• Re-injuring a spot on the rim of his ear at least twice
• A keloid developing especially on the rim of his ear (don't know if it's related to the fact that it was re-injured)
• The surface of the ear isn't as smooth as it once was
• Need for atresia repair revision
• At least one cold/ear infection

So we're still in the Bay Area (now we're in San Francisco) recovering from the atresia repair revision, and we're trying to keep Ben still.  He's doing homework and workbooks and learning about contractions and we're trying to make it so he doesn't miss too much of what was taught in class.

By the day after his surgery, he stopped throwing up and he feels good.  He did not take any of the Tylenol + Codeine - it tasted bad.  After the first night, we removed the cotton on his ear but left the plug in his ear.  He is taking Amoxicillin for 5 days after his surgery, and we're putting 3 ear drops in his ear twice a day, and we're keeping his ear completely dry.  We've been keeping it under the ear cup at night.

This is a picture of his ear - it still has a bit of the iodine stain on it from the surgery.  I compare this picture with some of the photos in September, and the skin looks considerably less smooth (even above and beyond the keloid on the rim.  The "good news" is that his hair is usually hanging a little over the rim of his ear, and you'd never notice the bumps - and he doesn't seem to be self-conscious about it.

Atresia Repair Revision

We arrived at Waverly Surgery Center in Palo Alto at 6:30 AM - we were the first surgery of the day.  The waiting room was full of people.  By 7:00 AM, we were in the pre-op room where the beds with the curtains are.  That place needs a bigger pre-op room!

Ann was the first nurse to help us - she had an Irish accent and was very sweet to Ben.  He had opened up his present from his aunt.  It was an NRG Ben 10 toy with an additional maleable plastic block that's supposed to go into the head - I couldn't figure out what purpose it served.

Ben did not want to change out of his pajamas into the hospital gown (he does not like "wearing dresses.")  Also, he definitely did not want to drink the medicine that makes him sleepy (it tastes awful - and they're not allowed to drink water to wash it down).

Dr. Bowman, the anesthesiologist introduced himself to us.  We told him about Ben's loose tooth and his ear that had been experiencing pimple-like explosions.  We told him about the violent post anesthesia experience he had last time.  He said he'd change up some of the anesthesia (and use propofol instead - yikes!)

Both Dr. Bowman and Dr. Goldstein were mid-range on the bedside manner scale.

I was able to change Ben into his hospital gown, and they wheeled Ben into the OR on time right as he was starting to feel sleepy.

At around 10:00 AM, Dr. Roberson came out and talked with my husband about Ben's surgery.  He said the surgery went well, that Ben was resting in the post-operating room, that he was able to go through the ear canal, that they decided to remove the Malleus and Incus and put in a prosthetic between the Stapes and the ear drum and that they had to use some cartilege which they harvested from the Tragus that Dr. Lewin had made.

We asked the nurse if we could have the Malleus and Incus that were removed but they said that it's against the law to remove "hazardous material" from the site and that in the surgery, the time bones are broken up so there's nothing to see. :(

At around 11:00 AM, we went into the room with Ben where he was waking up.  He was very groggy.  When we asked him if he wanted apple juice, he didn't know what it was.  He didn't want to drink anything.  He saw the bag of pastries that my husband had bought and was very excited about it, but then he couldn't bring himself to take a bite.  Plus the nurse (I think this one was Tess) said to not eat initially.  He discoverd the IV that was in his hand, and he asked that it be removed.  After it was removed, he fell back asleep.

Dr. Goldstein came to tell me what had happened during the surgery (I had not been there when Dr. Roberson explained it to my husband).  During our pre-op visit, when we were asking him about the possible surgical options and then asking him clarifying questions, he had said something like: "I'm answering these questions because you're asking them, but I just want to let you know what most patients don't ask these questions."  He had the same approach this time... When I tried to ask him a question (I forgot what it was - but it was about the procedure) his response was to rub my back and say, "Don't worry about it.  Everything will be fine."  As if wanting to understand what surgical process your 6-year old just went through represents excessive

Ben was sleeping soundly, and I wanted him to get some good sleep.  However, after Dr. Goldstein came by, the nurses were heavily hinting that they wanted me to wake up Ben and leave - so we did.

Ben went to sleep for a couple more hours, and then he woke up very hungry.  He ate some yogurt (liquid food only at first) and then an egg and some apple sauce.  After some time, he started to cling to his head, and he then started vomitting profusely.  Mop up time.

A little later, he tried to eat a little more.  Had some scrambled egg.  Mt. Vesuvius again.

In the evening, he grasped his head, and shortly after, he threw up a lot again.

It was brutal.

He went to sleep feeling pretty lousy and having thrown up a lot and starving hungry - and he was coughing all night - probably from having thrown up so much and also having had a breathing tube down his throat during the surgery.

Pre-Op Visit for Atresia Repair Revision

We had an audiological test first (I think the audiologist's name was XXX).  His hearing tested the same as it had recently - basically pretty serious conductive hearing loss with a well-functioning inner ear.

Dr. Goldstein met us and informed us about the various surgical possibilities - depending on what they see.  Since Ben's Malleus and Incus are fused, he said (1) they might put a prosthesis between the Stapes and the Incus or (2) they might remove part of the Stapes and put a prothesis between the Stapes and connect it directly with the ear drum (and also remove the Malleus and Incus) or (3) they might XXX.

We asked why the consent form included cartilege removal and why skin grafting.  He said that he didn't think either would be needed, but depending on what they find when they are in the OR.  He said that the cartilege removal is used if option 2 were used so that the titanium prosthesis doesn't poke a hole in the ear drum.  He said skin grafting happens if they need to repair the ear drum - which he said we were not doing.  Also, he said that they always intend to go through the ear canal but if it turns out it can't be done easily, sometimes they make an incision behind the ear and lift up the entire ear flap.

Then he took a look at Ben's ear and was amazed at how much goop there was in there.  He suctioned it out with the metal tube and just said that he's the sort of kid who's going to have to have his ears suctioned out a lot.

When we were asking some questions trying to understand the actual procedure, he told us that "noone" usually asks these questions...

Nearly Four Months Post Microtia Repair

Now we were getting close to the date of Ben's atresia repair revision, so we were in contact with Cheryl Medina to make sure we were doing everything well.  We are pretty busy, and Cheryl is pretty busy also, so it's sometimes difficult for us to connect.  These are the things we needed to confirm:

• When (what time) and where the surgery will take place
• Fasting after midnight before the surgery
• No aspirin or Ibuprofen in week before surgery
• Get written clearance from pediatrician on day (or two) before surgery
• Need pre-op visit with Dr. Roberson's office on afternoon before surgery

In the following week, he had a couple of episodes whereby I believe that cysts that developed in his ear canal popped, and they created a bit of puss and blood that dried up in his ear canal, once more alarming us.  This time, I cleaned them up a bit (and they looked a lot better).

We visited Dr. Keene (Ben's pediatrican) on Tuesday, Novmeber 15, the day before leaving for Palo Alto, and he gave Ben clearance for the surgery.  He said there was goop in his ear that he would leave since the ENTs could do a better job of removing it.

Three and a Half + Post Microtia Repair

Ben seemed to be doing well (from the perspective of not having additional blood episodes in his ear - but then he caught a slight cold (nothing terrible - but at this point - we were getting closer to his November 17 surgery date.  So Dr. Keene prescribed Amoxicillin for him so that he'd be clear by the surgery date.

I had been out of town, so I scheduled the follow up visit with Dr. Liu (and also saw Dr. Lewin) for Wednesday, November 9.  He took a lot more goop out of his ear but said that Ben was okay to have the November surgery.  Dr. Leewin was a bit distressed about how the ear now looked.  She said it looked worse than when she had seen it a couple of weeks prior.  We briefly rehashed potential treatments - including cortisone shots (but she said that probably would not work) and surgical removal with radiation...

Three Months Post Microtia Repair

Ben's ear had been healing really well and looked great.  With Dr. Lewin's blessing, he had resumed all of his regular activities such as swimming (and taking advantage of the Indian Summer) and AYSO soccer.  Around the time of his 6th birthday, we started to notice that the skin on his ear was looking like it was having a bumpy surface - almost like an allergic reaction.

And on the Monday morning after his birthday, I noticed blood coming out of his ear.  I quickly scheduled the next time I could see Dr. Lewin, and we met first thing on Wednesday, October 20 at Dr. Lewin's "other" office at the Cedar Sinai Medical Tower at 8631 W. 3rd Street.

Dr. Lewin was pretty distressed by how much the outer ear had changed in such a short period of time and said that keloids had developed and that keloids can develop on people as part of the healing process.  She said that the keloid appeared to be under the skin membrane and therefore might not respond to steroid injection treatment which may be tried to reduce the keloid.  She said that probably the treatment (if elected) would be surgical + a light radiation to the site so that a keloid would not re-develop.  I read a little bit about this on the Internet - there are some an interesting video by a Dr. Hill and then an article on the various types of treatments with none being entirely effective with no recurrence.  Obviously, we were more concerned about why the blood was in his ear, so she asked her colleague in this office, an ENT named Dr. Gene Liu, if he would take a look at Ben's ear.

Dr. Gene Liu is the same ENT that Devin (Ben's friend who we met through Dr. Lewin) now used - and it was nice to meet Dr. Liu.  He was very nice - especially for Ben, who hates having people touch his ear and his ear canal on his microtic side.  Dr. Liu ended up looking in his ear and saying it was just an outer ear infection (not something to be terribly worried about) but since our scheduled surgery was happening relatively soon, he prescribed antibiotics for Ben.  In addition, he sucked a lot of goop out of Ben's ear using a suction machine with a long metal "straw."  It was very loud due to the "slurping noises" but Ben was glad to have the "buggers" out of his ear.

Dr. Liu said to check back with him after a week or so to get sign off for the November 17 surgery.

Before leaving, Dr. Lewin showed me photos of the boy who she worked on who developed keloids after his microtia repair.  The keloids removed looked like little slivers of yellow fatty material.  Then, she re-sutered the spots and radiated them so that they would not re-keloid...Another boy, Miles - a patient of Dr. Reinisch, has a blog which includes a reference to his experience with having the keloids removed.  More to consider, but not now...

Three Months Post Microtia Repair

Ben was swimming a lot during the brief Indian Summer we had in early October, and around the week of his birthday in mid-October, we started to notice the outside of his ear looking a little strange, as if the skin was having an allergic reaction to something.  Then, on Monday morning (October 18) I noticed a ton of blood had clotted up in his ear.

I took him in to see Dr. Lewin for the first appointment on Wednesday morning, October 20.  On Wednesdays, Dr. Lewin works out of the Cedar Sinai Towers on 3rd Street with other ear doctors, including an ENT named Dr. Liu.

 Dr. Lewin was distressed about how the external ear skin looked - saying she had never seen an ear that started out so perfect for so long have keloids develop this late in the game.  But she said to focus on what was happening inside of his ear first, and she asked Dr. Liu if he could take a look at Ben's ear. 


Dr. Liu was great with Ben - who doesn't eactly like for strangers to touch his ear and particularly his ear canal.  Dr. Liu said there was a ton of goop in his ear and he stuck a long metal straw down Ben's ear and suctioned the goop out.  It made very loud slurping sounds, so Ben was a little squirmish and not particularly thrilled, but he liked the idea of having buggers removed from his ear.  He said that the problem was just an external ear problem (not middle or inner ear) and that just to be extra cautious, he was prescribing antibiotics and to see him in 10 days.

Before leaving, Dr. Lewin showed us what she did with another patient who developed keloids.  They surgically removed them and then radiated the spot so that keloids did not re-develop.  She said it worked well.  Of course, those are two things I want to not expose Ben to - so I'm not thinking about it for now.

Finally, Dr. Liu said that we'd probably be just fine to go ahead with the atresia repair revision on November 17 but to check back with him in 10 days.

Two and a Half Months Post Microtia Surgery

The drive from LA to Palo Alto has gotten to be second nature for me.  Ben and I leave at around 6:00 AM, we wave goodbye to the other kids, we put Star Wars on the truck's DVD player, and I hear him cute sounds (sometimes giggles, sometimes gasps while he's hiding under his blanket) coming from the back seat.  We stop at around 8:30 AM for McDonald's pancakes, sausage, eggs, yogurt, hash browns (him) and coffee (me).  And he takes a nap for an hour and a half.

We schedule our appointments with Dr. Roberson for around 3:30 PM, so we have a couple of hours of rest between when we arrive in Palo Alto (around noon) and when we need to go to our appointment.

At the appointment, Dr. Roberson looked at his ear drum and said it looked really good.  (Dr. Putnam had also said it looked great.)

He explained that he won't go through the actual ear drum for the surgery but along the side of the ear canal.  He also repeated the prognosis - pretty good.  He wouldn't know until he goes in there exactly what he would do - probably putting a titanium prosthetic onto the Stapes so that it touches the Incus.

After the doctor visit, we went to Create It Ceramics and Glass Studio at the Town and Country Mall in Palo Alto and made a shiny black spider with white dots and beady red eyes.  That place is like Color Me Mine but even better!  Lots of fun!

Two Months Post Microtia Repair!

September 18, 2011.  Today's the 2 month mark from when Ben had his microtia surgery.  Since the past post when Ben's brother repeatedly re-injured Ben's new ear, Dr. Lewin put his ear on lockdown under an ear cup for the following week.  After checking it last week, Dr. Lewin gave him the go ahead for any activities that he wants.  Soccer?  Sure!  Swimming?  Sure!  Ben had his first foray back into the soccer world yesterday and was a champ - he loves soccer.

His hearing on right side reverted to sub-par levels, so we talked with Dr. Roberson this past Wednesday.  He said that there could be problems with the ear drum, the stapes or both.  We'll go see him in person at the end of the month for an in-person assessment.

We've also scheduled an appointment for the surgical repair - he said there's a 50% chance that the surgery will result in restoring Ben's hearing to normal levels whereby he would not have to wear a hearing device.

Above is a photo of Ben today.  He was in the middle of eating, so that's mid-bite.  There are still a few tiny bumps in his ear, but his ear is looking really good overall.

Eight and a Half Weeks Post Microtia Repair

We visited Dr. Lewin, and she said that the ear was healing pretty well.  We removed the ear cup, and Ben resumed his regular activities - including his AYSO soccer.

By now we were also thinking about making sure that we scheduled Ben's atresia repair revision (his hearing had improved after the surgery in March, but then was back to its previous level after a while).  We wanted to schedule the surgery in 2011 if possible because we had already gone through the entire deductible as well as the maximum amount that a family pays in one year - so if we waited until next year - we'd have to pay the deductible all over again.  (See notes later on how this became a very fortuitous decision, as we later received a letter from Dr. Roberson's office that he was going to no longer be in network starting 2012, and also my own insurance policy raised its deductible and maximum amount that a family pays considerably for 2012...)

Anyway, we scheduled for Thursday, November 17.  In order to really know what we were doing during the revision, we talked by phone with Dr. Roberson.  He indicated that the hearing loss could be due to two things: (1) a "lateralized" ear drum and/or (2) conductive hearing loss due to the connection between the three tiny bones or ossicles (Malleus, Incus and Stapes) in his middle ear not having the connection they need in order to conduct sound.  According to the surgical notes from March surgery, there was a "fibrous" connection between the Incus and Stapes - so that, at a minimum was a problem.  In order to know whether the ear drum were also a problem, he'd have to see Ben.

Seven and a Half Weeks Post MIcrotia Repair

Ben's ear was healing really nicely, so with permission from Dr. Lewin, he started to enjoy the few remaining days of summer.  School was starting on September 7, and unfortunately, I had to be out of town on the first day of school!

September 6, 2011.  After the Labor Day weekend which included Ben's brother kicking him in the ear and knicking his ear, we paid a quick visit to Dr. Lewin who confirmed that we are doing the right thing with the Bacitracin and yellow tape, and that we're basically back to square one on that spot for Ben and need to wait for it to heal...

September 7, 2011.  Another bump on the road to recovery...While traveling, I received a text from my husband that Ben's younger brother (yes, the same one who kicked him in the ear a couple of days before) had wrestled him to the ground in the playground right before school, and Ben landed on his ear in exactly the same spot busting open the wound.  (Groan!)  Here is a picture (left) of what it looked like after the tumble in the play yard.  Thankfully, we now carry Bacitracin and yellow tape with us...

By the next day, the ear had healed a little and looked like this (right).

Ben returned to Dr. Lewin that day, and she re-bandaged his ear and said that it had to be kept under the plastic ear cup until it was completely healed.  We did not put any ointments on the ear, just let it heal under the ear cup.

Seven Weeks Post Microtia Repair

Ben after his brother kicked him in the ear

September 5, 2011.  Two steps forward, one step back.  Ben returned from a wonderful slumber Labor Day weekend nonchalantly mentioning that his brother had kicked him in the ear with his shoe - so in the same weak spot as before - his ear got banged up.  Back to the Bacitracin and yellow Xoroform tape.  (I went ahead and bought a jumbo pack of it online.)  The other parts of his ear are healing nicely, though...Tomorrow we'll be seven weeks out.

Six Weeks Post Microtia Repair



September 1, 2011.  As Francesca promised, Ben's ear continues to gain definition.  You can see the "Y" there.  Ben took a bath tonight, and I mistook his new ear with his "old" ear.  Not the greatest photo of Ben, but here's how his ear is looking.  We are going to the audiologist and Dr. Lewin tomorrow.  He's had a cold, and I think it's affecting his hearing in both of his ears.

September 2, 2011.  Since Ben was saying, "What?" quite a bit, we took him in for an audiological test with Dr. Sol and Dr. Avila (his new associate) who confirmed that he has a little "pressure" / fluid in his left ear and bone conduction loss in his right ear.  They set us up with a visit with Dr. Michelle Putnam (an ENT) with Westside Head and Neck for later in the day.

We had set up a visit with Dr. Lewin next.  Dr. Lewin who said that the ear is healing well, that we should continue with Clobetasol on the front for just a little longer but stop the Bacitracin, that Ben can do anything that the ENT OKs, that the ear will continue to heal and stabilize over the next few months and that we'll see Dr. Lewin next in December!

When we visited Dr. Putnam, she confirmed that the left ear had some pressure and that there is bone conduction hearing loss in the right ear (most likely the 3 bones in the middle ear have re-fused together and are not conducting sound) and that the ear drum looks good/intact.  She prescribed Afrin, Ocean's nasal saline solution and Nasonex (prescription) for Ben to take to try to clear up the liquid.  Also, she said he's cleared to swim but that he should dry out his ear after swimming.



Dr. Putnam and Ben



Five Weeks Post Microtia Repair

August 21, 2011.    Yes - that's his new ear!  It's been one month and three days since Ben's surgery.  Ben's ear is really coming around.  When Ben saw this picture of his ear (above), he insisted it was his old big ear.  There is still some raw-ness in the same spot and along where the sutures were along the rim of the ear, but the ear is looking less and less swollen.  For the past week and a half, since Dr. Lewin told us she was concerned about the healing in that one spot, we've been putting Bacitracin Zinc ointment on the raw spot, Clobetasol on the front surface of the ear and Neosporin gel on the part of the ear right at the entrance to the canal where there had been some cyst-like bumps.  The cysts at the front of the canal that I was worried about seemed to have resolved themselves and gone away.

I created my own way of wrapping his ear so that it's protected and is kept moist with the ointments, but he doesn't have to wear the cup.  So most of the time, Ben's ear is enjoying healing time under wraps.  He's not a big fan of wearing the cup, but he's fine wearing the bandage.

August 26, 2011.  It's been five weeks and four days, and Ben's ear has healed an incredible amount in a short period of time.  Here (to the left) is a photo from today after I cleaned his new ear.  As you can see, the swelling has decreased a lot.  It still has a ways to go.  The skin is still raw and a little pink.  Dr. Lewin says that it'll take a few more months for complete recovery.  Francesca said that it will get a bit more definition, which you can start to see already.  I'm also including (to the right) a photo of his "old ear" - his left side non-microtic ear so that you can see the comparison.

Here are also some pictures from the past few days.  When we went to visit Francesca on Wednesday, Francesca said that the cool thing is that while the ear first had only that one blood vessel providing the blood, by now vessels from other sides of the ear have grown into the membrane and so the ear is being provided with blood from all directions.  She said that the original vessel feeding the ear could be cut, and Ben's ear would be just fine.  Amazing!