Johnny Boy

Johnny was born in January of 2007, and changed our lives for the better.  A funny thing happens when you have a kid.  Up to this point, as a married couple your life is all about two people, yourselves.  Then you have a new baby, and life is about one person, the baby.  Johnny was a runt from the beginning, weighing in at 6 lbs and 11 oz.  

We loved watching Johnny grow and learn.  One day he was a baby, then he was up and running around and climbing all over stuff, and he is a little boy, with his own personality.  He was growing just like every other.  He started to develop his own personality, and it was awesome.

As he grew, he didn't start talking.  Our pediatrician wasn't concerned, because Erica was a late talker, so it could just run in the family.  My mom started to be concerned about things like autism, because she reads too many articles about it.  Our doctor assured us that Johnny had no symptoms of autism, he just didn't want to talk.

Then Eliza was born, and we found out about her hearing loss, and that it was genetic.  The doctor said he was pretty sure that Johnny was fine, but that we should check just to make sure.  He did a little screening thing in his office, and sure enough, it looked like there might be a problem.  

Erica took Johnny to Primary Children's in Taylorsville, and they did some testing in the sound booth.  The tests were inconclusive.  They couldn't tell if he wasn't responding because he couldn't hear, or if he wasn't responding because he didn't get it.  They wanted him to come back, but they also suggested that we set an appointment for a sedated ABR.  When the kids get to be older, like Johnny, they have to have them sedated so they are not moving during the tests.  This was in October.  The test could not be scheduled until December 23.  It was a little frustrating that we had to wait that long until we found out how bad Johnny's hearing loss might be.

I was convinced, again that nothing was wrong, that Johnny would be fine, and could hear fine.  Erica knew better.  She immediately started teaching Johnny sign language, and he began picking it up very quickly.  It was like he had been wanting to communicate, but he did not know how.  His whole world was opening up.

December came quicker than we thought, and soon it was the 23rd, and time to get him tested.  We had to sleep deprive him, meaning we had to keep him up late and get him up early.  We also weren't allowed to feed him anything, so he was in a great mood as we got to the hospital.  He actually did really well.  He was very curious about the hospital room and what was going on, particularly when they were hooking up all the sensors.  He thought it was pretty cool.  He just watched as the nurse got everything ready.  Then they brought in the medicine to help him fall asleep.  Soon he was out and they brought in the ABR machine and hooked it to the electrodes on his head, then they performed the test, and we waited, and waited.  We figured something must be up when the audiologist had her supervisor come in for a second opinion.  She tried to reassure us, but we knew better.  At this point, this wasn't our first rodeo.  But, we still didn't get any information, so we waited some more.  Finally she was done, and let us know, Johnny was almost completely deaf.  It was beyond the point that hearing aids would really work, and our option was a cochlear implant, after a six month trial with hearing aids.  We had prepared ourselves for this outcome, but it didn't make it any easier.  We tried to smile about it, but it was tough.

After he woke up, he was really out of it.  He just kept falling asleep, and didn't want to do much all day.  While we were still at the hospital, Johnny was waking up, and he wanted to play, but he was so tired, he had a hard time holding his head up.  He would try to walk, but always ended up crawling, dragging his head on the floor.  It was sad, but we couldn't help but laugh at him.  It was pretty funny.

Since that time, Johnny has continued to grow and learn.  He currently wears hearing aids, but they do almost nothing for him.  We know that an implant will help him to hear, but we have to wait until our insurance to say we can have the implant done.  The time is usually 6 months.  We are pushing, and hoping that it will be lessened for Johnny.  He already has to catch up two years, and the longer we wait, the longer he goes with auditory stimulus.  The brain is an amazing thing, and he will be able to compensate down the road, but it is still frustrating.

He is also learning a ton of sign language, and it is fun to watch him learn and use it.  The hard thing is that neither Erica nor I sign at all.  Everything we know now, we learned from teaching Johnny, so we feel like we can't learn it fast enough to teach it to him.  Erica is amazing, and does an incredible job teaching him all sorts of signs, but we were not prepared for this.

Johnny is a normal kid, though  He loves Disney Cars, and Curious George, and Batman, and Mickey Mouse.  He loves sports and playing outside.  He loves his little sister, and is her little protector.  It is fun to watch him take her along on his little journey through life. He is constantly showing her things, and trying to explain things to her.  He is our little man, and I couldn't be prouder of him. 

Eliza Ann

Our oldest is Johnny, but our story begins with Eliza, or at least this part of our story does.  Eliza was born in September of 2008.  She was a beautiful, healthy little girl.  We were so excited.  I remember looking at her for the first time and just falling in love.  She was my little girl from the very beginning.

The pregnancy had gone really well.  There had been no complications whatsoever.  It went better, in fact, than Johnny's did.  The birth also went off without any problems.  Like Johnny's it was quick once it started.  Erica went into the hospital early in the morning, and by mid-morning we had Eliza.  

Erica was tired, but relieved and happy.  I love seeing her right after she has had a baby, she just glows.  

While we were at the hospital, they kept coming in and checking on the baby and the mommy, as they always do.  They would occasionally take Eliza for weighing and temperature and other various tests.  One test that they do at every hospital is called an OAE.  This is a hearing screening.  They do it, probably without the parents even knowing.  We didn't know that it was done with Johnny.  We did know about it with Eliza, because she failed it.

I remember when the nurse came in and told us that Eliza had not passed the test.  She assured us that this was fairly common.  Sometimes fluid in the ear, or debris from the birthing process, can cause a baby to fail the test.  This often clears up in a week or two, then many babies pass the test without any problems.  She gave us some fliers on it, and encouraged us to set up an appointment to come back and have Eliza tested again.

I think it was at this point that Erica knew something was up, more serious than debris or fluid.  A mother always seems to know these kinds of things.  I was still just so happy from having a beautiful little girl, that I think I was convinced that we would get her tested and everything would be fine.  My little girl was perfect.

A couple of weeks later, we found ourselves back in the hospital getting the OAE done again.  My wife went in with Eliza, while I sat out with Johnny, and waited.  And waited.  I was sure that everything would be fine.  I was positive that she would pass this time.  Why would we have a child with hearing loss.  Johnny could hear just fine, why would things be different with Eliza?  

Erica came out with Eliza.  She failed again.  The audiologist gave us a referral for an ENT to get her ears checked out, to make sure there was no fluid in them or anything like that.  We went, and there was no fluid there, everything was fine in that department.  That meant it was time to go back to the hospital, for the OAE again.  She failed.  This time I was in the room.  We left Johnny with one of our parents.  After the OAE, the audiologist performed a test called an ABR, which was going to tell us how severe the hearing loss was.  He performed the test, as best he could.  The results were not as conclusive as he would like, since she woke up part way through, and we couldn't get accurate results.  At this point, the audiologist thought that her hearing was not very bad, that she would be fine without hearing aids.  He did want us to come back again, though, just to get better results.

We went back there again, and the machine wasn't working properly, and the results again were not very conclusive.  It can be a frustrating thing, when as a parent, all you want is to find out what is going on with your child, and no one seems able to give you any answers.

We went then to an audiologist at Primary Children's out in Taylorsville.  The machine worked fine, and we got results.  The hearing loss was in the mild to moderate range.  It was permanent.  She would need hearing aids in order to develop speech.  Erica and I had been preparing for this since the first tests, so I think we took it well.  We were determined to do whatever it takes to help our little girl.

As a result of this, we met again with the ENT.  He gave us an official diagnosis, and a prescription for hearing aids.  He then sent us over to get a MRI to see the internal workings, to see what may be causing the hearing loss.  We found out that she has an enlarged vestibular aqueduct.  This meant that the hearing loss was not only permanent, but progressive.  She would most likely lose all of her hearing.  This was pretty devastating.  At firs, we accepted the idea of hearing aids because it meant she would be able to hear.  He hearing loss was only in the mild to moderate range, so it wasn't that bad.  Then to find out she would end up being deaf, and there was nothing we could do to prevent it, that was hard.

As of right now, Eliza wears hearing aids.  They seem to help a lot.  She responds to sound really well with them in, like any other baby would, so we are thrilled.  However, we know that down the road, that won't be the case.  We have come to terms with that, and have accepted it.  She may end up being deaf, but she is still our perfect little girl.

Who are Heroes?

I've been thinking about this a lot lately.  When I was growing up heroes seemed to be in rich supply.  They seemed wholesome and good.  The cartoons we watched had clear cut good guys and bad guys, and when we played, no one wanted to be the bad guys.  Now things are getting more "real" and the lines between good and bad are getting faded and blurred.  All to often the heroes we watch in movies or TV shows do things that just aren't right, that we would never want our kids to imitate.  They are actually antiheroes, people who find themselves on the right side of the law, almost by mistake.

I want my kids to have real heroes, who choose to be on the right side of the law, who still see the difference between right and wrong, who stand for something.  Heroes that work hard to persevere, even though everyone says they will feel.  I want the to look up to people like that.  More than that I want them to be people like that.  I believe they are people like that.  They have challenges, but they are persevering.  We may have high aspirations for them, but we don't believe they have any limits.  We don't see their hearing loss as a handicap, but as a way to grow and be better.  That's what a hero does.  They see opportunities when others see obstacles.

As I thought about what this blog would be, I thought I would write about men and women I knew or knew of that displayed heroic qualities for my kids to look up to.  Then I realized a couple of things.  Number one, I realized that my kids have heroes all around them in their families, and most importantly in their mom, who is the most amazing person in the world.  They will no what a hero is because they will always have their mom to look up to.  Number two, I realized that my kids are already heroes.  I look up to them.  Sometimes I feel bad for Johnny and all that he is missing, but then I see him smile, or I see him gently give Eliza a kiss or hug, or make her laugh.  He is not missing anything important.  I realized this blog would be about them and how they are growing from children to grown up heroes, and what we all can learn from them.