Owen's Ears

In the last few weeks we've had a few more meetings, appointments, etc. regarding Owen's ear, and I figured I'd provide an update.

On Thursday, April 24th we went back to the audiologist for Owen's hearing aid fitting.  The little tiny mold they had cast previously was ready, and they had found a suitable loaner hearing aid for him.  He has taken to wearing it really well and there is minimal feedback at this point, which can be a problem with hearing aids for small children, but we still can't tell if it's helping at all.  Hopefully at the 6 month point they'll be able to put him in a sound booth and see if he responds to sounds on each side of his head, but for right now he's just a cute little kid with a hearing aid attached to the side of his head with toupee tape (a little tricked we learned from the John Tracy Clinic).

This past Friday, May 2nd, we had our first meeting with the teacher from the Early Start program.  The Early Start program is something provided by the state to help with kids at risk of learning disabilities as early as possible.  For us, this is facilitated through the Torrance school district.  The teacher will be coming to our house on a weekly basis and providing us with techniques to help make sure Owen is learning and developing at appropriate rates.  At 18 months of age Owen will be eligible to attend preschool 3 days a week at a classroom specifically for children with unilateral hearing loss.  When Owen starts school there will be a teacher who follows him basically from kindergarten through high school and meets with his teachers and hopefully provides an extra voice to make sure that his education doesn't feel any different than anyone else's.  More than anything it is just really nice to see that we won't be alone in being Owen's advocate, and that there are so many programs available that we had no idea existed 3 months ago.

Easter Easter Easter

Holidays with kids are incredibly fun, and Easter can give just about any holiday a run for its money when it comes to kid friendly activities.  This year our Easter festivities began on Friday the 11th.  We went to our first family class at the John Tracy Clinic (clinic for children with hearing issues), and while Sara and I were listening to a speaker Connor was building an Easter basket and running around outside collecting eggs.  Not sure if this was a good thing, as Connor may now expect every family school day to have Easter eggs, but I'm sure we'll figure that one out.

The next step in our Easter celebration was through Connor's normal daycare, where Connor decorated eggs and had another Easter egg hunt.  He came home with 17 eggs filled with a variety of goodies.  I am incredibly thankful to the parents who filled their eggs with stamps or stickers, as Connor certainly is not in need of more candy.

Around the house Sara and Connor had all sorts of fun making bunny garlands, dying eggs with the standard egg kit as well as with shaving cream and food coloring, and decorating Easter cookies.  Sara and I also enjoyed a few Easter festivities a little early as well, like Cadbury eggs.

On Easter Sunday we woke up and Connor got to rifle through his Easter basket while Owen tried to avoid misplaced eggs and sidewalk chalk.  Connor found the chocolate immediately, and after he was appropriately sugared he found his helicopters, which dad managed to fly straight in to the ceiling (Connor seemed to think this was pretty cool, mom less so).  After we finished basket opening we hopped in the car and headed to Orange County for brunch with both sets of grandparents and the Bergmanns.  

The golf club that Bart and Joni are members of does a really great job of celebrating holidays.  Along with brunch they had a bounce house, petting zoo, egg hunt and Easter bunny all set up.  Connor loved the bounce house, loved the Alpaca in the petting zoo, managed to snag a couple of eggs away from the marauding 7 year olds, and steered well clear of the large man dressed in a bunny outfit.  Smart kid if you ask me.  Owen celebrated at the club by sleeping in Grandma's arms.

After nap time (for all of us) it was time for, I know you're going to find this hard to believe, another egg hunt.  You would have thought that 3 egg hunts for one boy would have been enough, but then you would have thought wrong.  Connor found 24 eggs in Bart and Joni's backyard, with only minor assists from Papa, who was always able to steer them towards eggs but could never quite seal the deal of finding them.  Owen enjoyed this Easter egg hunt by sleeping in his pack and play.

All in all it was a great day spent with family and wonderful to see the fun that holidays can bring to young eyes and minds (yes, Papa qualifies under these restrictions).

The Semblance Of A Routine

One thing that Sara and I discovered during Connor's first few months was that a routine was a great simplifier to the craziness that can be everyday life with an infant.  Everyone had similar expectations about what was going to happen during each time of the day.  For Connor the routine worked brilliantly, and Sara and I maintained the routine in the face of just about every obstacle.  Sometimes that was probably a bad decision as I think we limited ourselves because we needed to be home for "nap time," but in the vast majority of cases it was a major positive that brought some sanity back into our lives.

As Owen has gotten a little older we've begun to try and develop a new routine for our family of four. We've discovered that we, and Owen, need to be a little more flexible than we were during Connor's first few months.  Having a nearly three year old with social obligations requires a certain amount of get-up-and-go.  Regardless, we have gotten to the point where there is a rough road map for each day, and it has made life significantly more straight forward.

One huge benefit to the routine is the fact that Sara and I have gotten our evenings back.  Before Owen was born, Connor would go to bed between 7:30 and 8:00 and Sara and I would be able to have two hours to talk to each other, pick up the house, do laundry, stare blankly at the television like a trauma victim...whatever was necessary.  During the first few weeks of Owen's life that time seemed to disappear.  It seemed that any moment that Connor was asleep, Owen was crying.  Trying to find a minute for Sara and I to say hello to each other was exceedingly difficult.  As Owen has progressed and started to learn when bed time is and has gotten better at sleeping a little more soundly and predictably, Sara and I have slowly gotten an hour, then an hour and a half, and now close to two hours where we can just be with each other.  With so much energy focused on Connor and Owen throughout the day it is nice to be able to look at each other without chaos in the background and remember that we are in this together, that there's no one with whom we'd rather share this experience.

  

A Trip To San Diego

This past weekend we managed to make our first trip down to San Diego after Owen was born.  It never ceases to amaze how much stuff we travel with when we're away from home for only 48 hours.  It looks like we're moving across the country.  Regardless, we had a lovely weekend spending time with family and friends.

On Friday evening, after suffering through the lovely traffic on the 5 South, we had a gathering at my parents' house.  Gammer made it over to meet Owen for the first time, along with Jim and Lark, Greg, John and Nancy Watt, DeeDee, and Steve and Kris.  We hung out in the backyard with the amazing weather, Connor got his fill of baseball and soccer and golf, and we all enjoyed each other.

Friday night was a little less pleasant as both kids had a little trouble falling asleep in their new environs.  For about an hour stretch I don't think Sara and I were sitting down at the same time as we traded off consoling and comforting duty with each boy.  They did both manage to fall asleep at some point though and we survived until morning.

On Saturday morning we got up and headed to the waterfront to see the USS Midway.  The Midway is a decommissioned aircraft carrier that has been turned in to a museum in San Diego Bay.  The flight deck has about 20 different aircraft, many of which you can climb into, and there are also exhibits set up in many of the interior spaces.  As Connor is very in to planes at the moment this was a hit.  He loved climbing in to the cockpits, pressing all the buttons and turning all the dials.

Saturday afternoon was a little more casual and Saturday night had a few less waking children.

On Sunday morning we got to go see another airplane.  Al Treadwell, a family friend, owns a small 6 seat plane that he keeps in a hanger at Gillespie field which is not far from my parents house.  Connor again got to climb in the pilot's chair and even got to put on a headset and listen to the radio tower.  Next time he's asked that the plane fly up high.

After packing our car full of everything that we unpacked just two days before, we headed back up the 5 (again, a lovely experience) towards home.  It was a successful weekend trip.  Now Sara and I just need a weekend from the weekend to recover.

Where Does The Time Go???

Alright, so I've been a little delinquent.  We'll consider this a catch up post.  The happenings in the Means' household the past few weeks:

- UCLA basketball games.  We enjoyed watching the Bruins make it to the Sweet 16 this year in the NCAA tournament.  We watched their first game against Tulsa with T, Brittney, Henry, Lara and Molly.  Game numbers 2 and 3 were T, Brittney and Henry.  With small children I am extraordinarily happy about the invention of the DVR.

Molly Visit - My cousin Molly came to visit us on the way down to San Diego to pick up some furniture.  She got to experience the joys of waking up at 3am to a crying baby and the fun that a 2.5 year old can bring.  On Saturday morning while she was here we made our way to the driving range and out to Panera Bread for lunch, which is quite the victory if you ask me.

Disneyland - Mostly because Sara and I can't help ourselves, and we're going to get use out of those passes while we have them.

Date Afternoon - Sara and I made it out of the house without the kids for the first time.  We went up to Hollywood for brunch and then saw The Book of Mormon at the Pantages Theatre.  We loved the show, loved brunch, and loved being able to talk with each other without being interrupted by crying or Connor asking "Why?"

A Severe/Profound Unilateral Hearing Loss

I have no idea how to start this other than to say that we received some unhappy news in regards to Owen last week.  The worries began back at the hospital, and last Tuesday our fears were realized.  During any newborns stay in the hospital they are subjected to many tests, one of which is the hearing screening.  Owen's results the first time through showed him passing in his right ear but his results were "Refer" on his left ear.  Many times a failed test can be caused by fluid in the ear or any other number of issues from birth.  They'd be back the next day to retest, no need to worry.  The next day the hearing screener rolled her cart back in and wired Owen up once again.  Right ear pass, left ear "Refer."  Shit.  We'd need to come back to the hospital about a week later for a rescreen.

This is about when the Googling started.  The internet is an amazing tool and it provides a huge amount of information, some of which is even accurate.  We read that about 1 in 1000 babies is born with a hearing loss.  Most babies who fail their first test at the hospital are fine, only about 5~10% of those with a "Refer" test actually having hearing loss and they generally pass their rescreen test.  A week later Sara took Owen back to the hospital for the rescreen.  Right ear pass, left ear "Refer." Shit again.  We would be contacted by an audiologist for further testing.

Again, back to the googling.  What's an audiologist?? What sort of tests do they run?? What type of percentages are we looking at now?  We were contacted within the next couple of weeks by the John Tracy Clinic in Long Beach to set up Owen's additional testing, which occurred on Tuesday morning.  They ran three different tests while we were there.  First, a tympanometry which revealed normal activity of the ear drum.  Second, an ABR, or auditory brainstem response.  They basically put an earphone into the ear and measure the activity on the auditory nerve.  Right ear pass, left ear "Noisy."  Sadness

This was basically the end of hope that it was something that would end up being fine.  Owen was diagnosed a a severe/profound unilateral hearing loss.  He cannot hear, and without much doubt will never be able to hear, out of his left ear.  We are still struggling with this news and all of the implications.  Again, the internet can be both amazing and terrifying. We know that we have a huge number of additional appointments in our future, that team sports will be more difficult for Owen because sound localization is going to be problematic, that it could present a safety issue (for instance, not being able to hear an approaching car while on a bicycle), that he is significantly more likely to have learning difficulties....There is a second side to this coin though.  With one good ear he has every opportunity to grow up with a completely normal childhood, excel in whatever he strives for, have no difficulties in school, become the next Stephen Colbert - another who suffers from unilateral hearing loss.  As I think Sara and I try to approach everything, we will continue to hope for the best and plan to prevent the worst.

We still have more questions than answers.  The next steps appear to be the following:

- Make appointment with different audiologist who can help with any sort of appropriate treatment plan.

- Make appointment with ENT to ensure that there is nothing structurally wrong with the ear.

- Make appointment with Early Start Program through our school district to begin in home work for both Owen and the rest of the family.

- Start attending classes on how to best help Owen live and learn as any normal child would.

We are extraordinarily blessed by having two amazing little boys.  We are still struggling with the sadness and the complications that this diagnosis has brought into our lives.  Regardless, we move forward, figure out what the next steps are, and figure out how best to love and care for both Owen and Connor while understanding this new reality.

Our Little Helper

When is a helper not really a helper? When it's a 2.5 year old trying to "help" with burping the baby, or calming the baby down, or feeding the baby.  Connor loves to help take care of his little brother, so any opportunity we can find for him to help without causing bodily harm we try to utilize.  This comes in the form of Connor pouring warm water over Owen during bath time to keep him from getting cold, or grabbing a burp cloth out of the drawer to help mom during feeding, or showing Owen a stuffed animal when he's upset.  It is amazing to see the compassion that Connor shows towards Owen, and Sara and I are excited to see when Owen will actually be able to reciprocate with a smile or a giggle.

Below are a couple of videos of our little helper in action.