Luke’s Story – Update

I apologize in advance for the length of this post.  It’s going to be a bit long, because – well – quite a bit has happened with my little man since January.  Before I dive into it, let me backtrack a bit.  Luke was diagnosed with a mild-to-moderate sensorineural hearing loss in December of 2012.  Sensorineural hearing loss is diagnosed when an individual’s air conduction test matches their bone conduction.  Let me explain – an air conduction test is a typical hearing test where the individual wears headphones or ear inserts.  Sounds (called pure tones) are played into each ear at specific frequencies as the decibel (or loudness) is increased.  The individual indicates when they hear the tone.  When the audiologist gets three readings at the same decibel for each frequency in that ear, that is the level that the person is considered able to hear for that frequency.  The test continues until all frequencies in both ears are charted.  A bone conduction hearing test follows the same pattern, except the pure tones are played through a baha device that is touching the skull.  The baha vibrates the skull and transmits the sound directly to the nerve networks in the brain, bypassing the inner ear.  If an individual’s air conduction shows a loss, but the bone conduction is normal they are diagnosed with a conductive hearing loss.  Conductive hearing losses are caused by mechanical issues with the inner ear: fluid, small ear canals, etc. Generally a conductive hearing loss can be corrected.  Now, if an individual has a loss with an air conduction test that is matched by their bone conduction test they have a sensorineural loss – something inside their head (past the inner ear) is causing the loss.  It is considered a permanent hearing loss.

Luke has always tested as having a sensorineural hearing loss and his levels of loss were always very consistent.  Which leads into me addressing behavioral hearing tests.  Air and bone conduction tests are behavioral hearing tests.  Behavioral hearing tests count on the individual being tested to react or indicate when they hear the sounds.  It sounds crazy, but they are considered the gold standard for testing.  Even though you are relying on the individual to give you cues as to when they hear the tones, they are incredibly accurate (even for small children).  Luke has always been a stellar tester.  He’s always extremely consistent and patient while in the booth.  He does play-based hearing tests where he will hold a ring or peg to his cheek.  When he hears the sound, he sticks the peg in the board or drops the ball in the bucket or places the ring on the peg.  His audiologist has tested him by having him wait with the toy on his cheek for over a minute.  Luke just sits there waiting until he hears the tone.  I’ve witnessed this during tests.

From December 2012 to January 2014, Luke was tested at least once a month.  His results were always the same and his levels were always extremely consistent from test to test.  There was no doubt that he had a sensorineural hearing loss.  He wore hearing aids with great success and we worked incredibly hard on his speech.  At the end of January 2014, Luke had a hearing test and to his audiologist’s surprise, all of his levels shifted into the normal zone.  His bone conduction also shifted into normal.  She tested him a week later and the results were the same.  She also tested his acoustic reflexes (a test that plays a loud noise in the ear and looks for the inner ear’s reflex – a person with normal hearing has acoustic reflexes whereas a person with a hearing loss can be missing some or all of their reflexes).  His acoustic reflexes, which were non-present in several frequencies before, were now all present.  On February 7, 2014 she sat me down and explained that Luke’s hearing was testing as normal and that we were going to see how he did without his hearing aids.  To say that I was shocked would be an understatement.  She explained that she has seen one other child who’s sensorineural hearing loss fluctuated to normal and that his loss eventually returned.  She was pretty blown away by what was happening to Luke and couldn’t explain why it was happening.

We removed Luke’s hearing aids and observed.  He seemed to hear everything but had some frustrations and temper tantrums (which could be because he’s two).  His teachers noticed that he wasn’t playing in the group but instead sticking by himself.  Again, something that could be explained by his age.  We made an appointment with his ENT and a second opinion hearing test at Mercy Hospital.  A full hearing test was conducted at the hospital with the same normal results.  The audiologists were baffled.  They explained how rare it is to have a sensorineural loss that just goes away.  Luke’s ENT had the same reaction.  He explained that you don’t have a sensorineural hearing loss that just corrects itself.  He can’t explain why it’s happening, but he explained that the only thing that can be done was for Luke to be closely monitored with very routine tests.  He is pretty confident that the loss will eventually return, and he wants to make sure we catch it early when it does.  He suggested we do a sedated ABR (a test that measure’s the brain’s response to sounds) to rule out something called auditory neuropathy.  Auditory neuropathy is a condition where the individuals degree of hearing loss fluctuates rapidly and effects the individual’s ability to understand speech.  We had that test done and once again the results were normal.  The audiologist that conducted his ABR told me that if his loss never returns that Luke needs to be written about in medical journals.

At some point during all of this, we realized that when Alex was diagnosed with his hearing loss he could speak really well.  He was 4 when his loss was found (he didn’t have any tests before that) and his doctors were surprised at how well he could talk with the amount of loss that he had.  Alex has a high frequency loss – he hears low frequencies normally but as the frequency increases his degree of loss increases (also known as a ski slope loss because his audiogram looks like a skiing hill).  His loss hasn’t changed since he was 4 and he’s worn hearing aids since being diagnosed.  We were always confused because we assumed that Luke inherited his hearing loss from Alex, but their types of losses didn’t match.  We are now wondering if Alex went through a fluctuation period like this during the first four years of his life.  Maybe he had a mild loss or no loss until it fluctuated to where it sits now?  It would explain how he learned to speak so well.  It’s a theory that we have, but will never know if it’s accurate.  The only thing we can do is wait it out and see what happens with Luke.

Luke is still testing as hearing normally without the use of hearing aids.  He is tested once a month.  Last month, he had one frequency in one ear that started moving back toward the mild loss range.  He also lost his acoustic reflexes for his high frequencies in both ears.  We thought, it’s happening – his loss is returning.  This month, all his frequencies were back to normal and all his reflexes were present.  Crazy, I know.  Lord only knows what will happen next month.  Luke continued attending classes at Moog three times a week until the school year ended last week.  He is going to attend once a week during the summer session.  If his hearing is still normal in August, he will stop going to classes at Moog and only go for his hearing tests.  That’s the plan for now, at least.

When we explain to people what’s going on with Luke, their reaction is to think that he’s been healed or that his loss is gone.  While I would love nothing more in this world, it’s simply not true at this point.  Luke has a fluctuating sensorineural hearing loss that happens to be fluctuating into the normal range.  While it’s rare for a loss to fluctuate into normal, it can happen and his happening to Luke.  What all the medical professionals are telling us is that his loss will most likely return, so we are trying to prepare for that.  Mentally, it’s really tough because I am thrilled that’s he’s hearing normally right now and that we have some time to pack him full of as many words as possible, but I can’t be too excited about it.  I keep trying to remind myself that it’s probably not going to stay like this.  I don’t want to get my hopes up.  In the same token, I keep waiting for the other shoe to drop.  It kills me to not know what to expect or when to expect it.  I’m so paranoid, that it makes me crazy.  Still, it’s not a bad problem to have.  For now, we wait.

Untitled

Advertisements

Naming a Kid is No Joke…

When we were naming Anna and Luke, we were pretty lucky.  We opted to use family names for their first and middle names.  Anna was named after her great-grandmother (my father’s mother’s mother).  Her middle name is mine and my mother’s middle name – Elizabeth.  Easy peasy, we quickly set our first born’s name.  When we found out that our second child would be a boy, we tossed around names.  We knew that his middle name would be Eugene after Alex’s father who passed away several years ago.  Our question was what his first name would be.  Alex initially thought that he would like to name our son Alex, but since we were using a different middle name, he wouldn’t have been a junior.  We would have had two Alex Parsons in the house and I was worried that it was going to be confusing.  One day, Alex told me that his grandfather (Eugene’s father) was named Luke.  I loved the name and we both decided that our son would be Luke Eugene. Done and done!

After Luke was born, I was doing our first Christmas card as a family of four (Alex, Lisa, Anna, & Luke) and I realized that we had inadvertently created a bit of a pattern.   We each have a four letter name that either starts with an ‘A’ or an ‘L’.  And, the ‘A’ and ‘L’ alternate down the line.  Heck, our dog is even Lucy.  I swear we didn’t plan this out.

When we learned that we would be adding another bambino to the mix, we were perplexed about what to do about the name.  Do we stick with family names and say screw you to the pattern?  Or stick with the pattern and explain why our third child doesn’t have a family name like her siblings?  We are out of family names that are four letters and start with an ‘A’.  If we were Alex, Lisa, Anna, Luke, & Charlotte – who was the surprise?!?  We opted to save on future therapy bills for our youngest child and stick with a 4 letter ‘A’ name and use two family names as middle names.  Best of both worlds, huh?

Once we learned that the baby is a girl, we decided on the name Abby.  Well, we Googled ‘4-letter A names for girls’ and worked our way through the short list of names.  It actually made picking a name rather easy.  Alex and I instantly fell in love with Abby.  It just fits.  ‘Anna and Abby – the sisters Parsons.’ ‘Anna, Luke, Abby – clean up your rooms!’  It rolls of the tongue.  Plus it passes the resume test.  ‘Abby Parsons has been named as the next CEO of Apple.’ It is everything we wanted in a name and we absolutely fell in love!  For the middle name, we wanted to honor my mother’s side of the family.  My great-grandmother (mother’s, father’s mother) was named Rita Rose.  She was one heck of a woman and it’s an honor to pass that legacy along.  The other interesting piece is that Abby will be the 6th generation of Rita (that I know of) in my family.  My great-great-grandmother was Katheryn Rita.  Her daughter (my great-grandmother) was Rita Rose.  Her daughter (my great-aunt) is Rita Helen.  Her niece (my mother) is Rita Elizabeth.  Her niece (my cousin) is Rita Marie.  And now, we can add Abby Rita Rose to the list.  Personally, I think it’s pretty awesome.  I love the tradition of family names and passing them along.  Plus, with so many amazing women who were named Rita in my family, how can Abby be anything but amazing?!?
Untitled

The Big Reveal!

A little history before I go into our reveal:

With this pregnancy, my doctor requested that I have a first trimester genetic screening done in order to ensure that we are taking all the precautions for my history of preterm labor with a genetically sound baby.  Before you get in an uproar, we are talking about genetic conditions that are incompatible with life, not conditions such as Downs Syndrome.  Anyway, I ended up having a relatively new test done where they take some blood from me.  Apparently when placental cells die, they make their way to my bloodstream to be discarded.  The lab that does the test can separate my cells from the placental cells.  They can then acquire DNA information from the placental cells and look for things such as Downs, several of the trisomies, and defects with the sex chromosomes.  Because they have the baby’s DNA, they can also determine (with 98% accuracy) what sex the baby is.  I had the test on a Monday when I was a couple days shy of 12 weeks.  I got the results Friday morning when I was 12 weeks and 2 days.

The reveal:

I was at Luke’s school doing parent led therapy with his educator.  I heard my phone ring and thought that I should check it.  Luke’s educator took over his therapy while I stepped out.  The caller ID was blocked, but I had a funny feeling it might be my test results.  I was told when I took the test that it would be 4-14 days for the results.  I was hoping that they would come closer to the 4 day side because I’m really impatient.  I answered the phone and the nurse explained that she had my results for me.  The wonderful news is that the baby tested negative for everything that they looked for!!  What a relief.  She then asked me if I would like to know the gender.  My heart was pounding in my ears as I quickly said that I would.  She then said, ‘the results indicate that you are carrying a girl’.  I thought I had a girl in there, but I was refusing to believe it. I was thrilled and shocked.  It was an awesome feeling.  Another little girl!  Wow!

I walked back into the room and must have had a crazy look on my face.  Luke’s educator asked if everything was okay.  I said that everything was more than okay! I didn’t want the kids to know about the baby being a girl yet, so I wrote ‘we are having a girl’ on a piece of paper and showed to the educator.  We quickly finished up the therapy session and Anna and I went on our way while Luke went to school.  Our next stop was Hobby Lobby.  I had already made ‘Big Sis’ and ‘Big Bro’ shirts for Anna and Luke.  Now that we knew what we were working with, I wanted to get a onesie and the ‘Lil Sis’ applique.  Luckily Anna didn’t ask what the applique said and she remained in the dark about what we were having. I also planned on making cupcakes with pink filling to reveal to Alex and the kids at dinner.  It was eating away at me to not tell Alex.   I’m going to fill you in on a little secret – I’m HORRIBLE at surprises.  I get so excited I want to spill the beans.  It’s how I’ve always been.

We headed to the grocery store and I gathered supplies for cupcakes along with a few other things we needed.  After loading the groceries and Anna in the car, it was too much for me to take.  I sent Alex a text telling him that I had a surprise for him.  He replied asking what it was.  I asked him what he thought it was.  His next reply was ‘do we know gender’?  Apparently he can read me like a book.  I told him that we did but that I wanted to tell him in person because I wanted to see his reaction.  We decided that I would head to his work after taking the groceries home so I could spread the news.  So, I raced home and quickly put the groceries away.  As I was driving to Alex’s office, I called my mom to invite her and my dad to dinner.  I had to be really careful with my words so I didn’t slip.  I also called my sister to invite her family.  Neither of them knew that we had found out the baby’s gender.

I arrived at Alex’s work and waited for what seemed like 22 years for him to come out.  It was probably more like 10 minutes, but I was so excited to show him.  Once he got to the car, I asked him what he thought the baby was – one last prediction.  Up until that point, he thought the baby was a boy.  In that moment he said he thought the baby was a girl.  I explained that he had to be careful with his reaction because Anna still didn’t know.  I had him look at the Hobby Lobby applique and this was his reaction:

Untitled

 

Alex was thrilled.  I started crying.  Don’t judge me.  I have a ton of hormones going on right now…

Once Alex ran back into work, Anna and I raced to Luke’s school to pick him up.  We ate lunch and Luke went down for a nap.  I got busy baking the cupcakes for that evening.  Anna was happily watching TV while I baked the cupcakes, scooped out the inside, filled them with pink icing, and frosted the top with unassuming white icing.  We were ready to surprise the kids and my family.

Alex came home and my family made their way to the house.  We finished cooking dinner and everyone ate.  I was having a hard time making conversation with everyone because I was worried I would slip up.  Every time I looked at the cupcakes my heart would skip a beat.  I was too excited to eat very much, but everyone else seemed to be taking their time with their food.  Again, maybe it was just because I was really excited.  Once everyone finished eating and the dishes were cleaned up, I said it was time for cupcakes.  Before anyone grabbed one, I told them about the call I had received that morning and that the baby was testing as healthy.  I also explained that Alex and I knew the sex of the baby.  I went on to explain that the inside of the cupcakes have either pink or blue filling to reveal.  Everyone was shocked that I hadn’t already spilled the news (I told you I have quite the reputation) and were so excited to find out.  We decided that Anna would be the one to open a cupcake (with Alex’s help) and show everyone.   I was sure to explain to her that if the inside of the cupcake was pink that we were having a girl baby and if it was blue that meant the baby was a boy.  I should add that from the instant we told Anna she was going to have another baby brother or sister, she has been adamant that the baby is a girl.  For a while she even refused to believe there was a chance the baby could be a boy.  She has always maintained that the baby is a girl.  Always.  See the video of the big reaction below:

We are all pretty excited! Anna is over the moon thinking about her baby sister.  Luke is excited, although I’m sure he doesn’t realize what this really means for him.  Alex and I are so excited for another girl (especially Alex since Anna is such a daddy’s girl).  We’ve had some conversations that go something like ‘think of all the shoes and clothes those two will want at some point’ or ‘we have to pay for two weddings down the road’.  It’s sinking in what having two girls really means… We’ll be just fine, I’m sure! Pray for us.

 

 

What the heck happened?!?

Well, life happened and I took a pause from blogging.  Actually, quite a bit of life happened, so I decided to carve out a little time and do some general updates on what’s going on with the People Parsons.

– My photography business has exploded.  I couldn’t be happier with how people seem to be receiving my work! Plus, I’m loving it!  Because of that, all my free time has been devoted to my business.  It might explain why this site has been a bit quiet lately.  Seriously though, starting my own photography business has been amazing.  I meet so many interesting and fun people.  I love interacting with all the kids and snuggling with the newborns.  That newborn smell is intoxicating! The kids are enjoying me being at home with them (although they tell me that they love their Daddy more – absence makes the heart grow fonder, right?).  All-in-all, it just feels right.

Easter2014 5

– Anna seems to have hit the teenage emotions as soon as she turned 4.  She’s been a total handful lately.  I think I’ll be glad that she’s strong willed and independent at some point.  For now, I would love to be able to tell her to put her shoes on without getting attitude thrown at me.  Say a prayer for when she actually does hit the teen years.

Parsons 27 copy

– Luke has followed the attitude trend and has worked his way into the terrible twos.  We are dealing.  The big news with my little man is that in January he had a hearing test and his whole line on the audiogram shifted into normal.  It’s really crazy and no one can definitively explain what’s going on.  You don’t have a sensorineural hearing loss that just disappears.  It just doesn’t happen.  Right now, he has a fluctuating hearing loss that happened to fluctuate into the normal range.  It’s really rare and in almost all cases the loss returns.  I could write a novel about this, but I’ll spare you for now.  I promise to write a post all about Luke’s hearing for those that are interested.  In a nutshell, he’s hearing normally at this point without his hearing aids.  He is being closely monitored with monthly hearing tests to track what his hearing is doing.  It’s a wait and see kind of thing, which I totally suck at…

Easter2014 12

– Let’s see, what other news would we have.  Hmmmm.  I can’t think of much. Oh, except this one other tiny thing.  So, I’m pregnant! There’s that. 🙂 Alex and I had pretty much decided that we were done.  Well, Alex knew for a long time that he was done and I was wavering but heading toward being done.  We sold 98% of our baby gear and all of my maternity clothes because we thought that Luke was our last.  And then, one weekend we decided to paint our master bedroom.  When we built the house six years ago, the walls were painted a flat ivory and that’s how they stayed until recently.  So, we painted and hung curtains.  It felt like a resort so we decided to celebrate.  And now I’m due in November with Bonus Baby Parsons.  November 19th to be exact.  The moral of the story is that you shouldn’t ever sell your baby gear and never give your master bedroom a makeover.  After the initial shock went away, we are really excited.  Even the kids are excited.  Correction – Luke has no idea what’s coming and Anna is only excited if the baby is a girl.  We should know in less than two weeks if Anna is going to be totally on board or not.

Parsons Announcement 8 copy
Parsons Announcement 6
Untitled