{Can You Hear Me now?}

I took Finn in for his hearing test (ABR-more extensive hearing test) and got the results back immediately after it was done!  And the verdict is:  He Can Hear!!!  His right ear tested normal; hears fine out of it.  His left ear was diagnosed with mild hearing loss.  Huge relief for me.  I thought he had moderate/total hearing loss in his left ear.  Whew!  So thankful it's just mild.  What's mild?  On the test 25 (decibles?  not sure what the label is here) is normal hearing range.  He had to have it turned up to 40 so he could hear it normal.  A 40 scores in the mild hearing loss range.

As of lately, I could tell that he was hearing.  BUT prior, from birth to the end of July I knew he wasn't/couldn't hear me.  He failed two newborn hearing tests before doing the ABR test, which was really discouraging to me.  When I took him to do the ABR test, they did another newborn hearing test and he failed again.  Which surprised me, because the ABR confirmed that he could hear.  The audiologist told me that the newborn test is strictly just a pass/fail test, the ABR test detects ranges, pitches, and wavelengths and is more concrete.  There are a few factors that can cause failure of the newborn test.  If the probe is hitting the wall of the ear canal, wavelengths don't get to the eardrum and that will cause it to fail.  If there is fluid in the ears, it causes blockage so the wavelengths don't vibrate in the eardrum like it's supposed to.   So although he failed and at the time made my heart sink, it was kind of misleading and I stressed for nothing.  Funny, right.....  I wish someone would have explained why babies often can fail the newborn test.  When he failed twice, I told myself that I wasn't going to freak until it was time to freak.  So glad I didn't freak out, it would have been for nothing.  I was very concerned and stressed a little.  But I am glad to know that the time to freakout isn't/won't be coming.

From birth to the end of July when I knew he wasn't/couldn't hear me he did have fluid in his ears.  Which when you have fluid in your ears it's like hearing when you're underwater.  You can't.  It's not clear, it's muggy.  And this explains why he wasn't/couldn't hear me during that time. 

Tubes and a hearing aid could be coming in the future.  Not sure yet.  We will be visiting a pediatric ENT to check for fluid in one month and then he will do another ABR test to make sure it coinsides with the first ABR.  And then we'll decide where we go from there.  For now, we are happy to have crossed this hurdle. 

{Dr. News}

I just got a phone call from the pulmonologist.  He told me that Finn's sleep study results were in.  WHAT!?  Awesome.  I guess the cardiologist put a rush on it and seeing how he is young and has ds, it got pushed through. 

The sleep study showed that his saturation levels (oxygen levels) stayed between 90 and 100 for most of the night.  Which is very good.  BUT they did dip throughout the night into the 80's.  This is cause for concern.  It's not a huge concern, but something that requires attention.  The results did show that he has obstructive sleep apnea.  What is obstructing his airway?  We don't know yet.  It could be his tongue, tonsils, adenoids, or something or another. 

To help keep his oxygen levels from dipping, it is suggested that Finn be on oxygen when he sleep.  The results showed that he should use a cpap, but he is too small to fit a mask to his face.  So he will do oxygen. 

I'm happy to have the results back so soon.  Next, onto his ABR (hearing test) on Thursday.  Now those results, I will be anxiously awaiting.

{DS Tidbit}

Simian Crease.

A simian crease is a single crease in the palm of the hand as compared to two creases in a normal palm.  Simian crease occurs in about 1 out of 30 normal people, but is also frequently associated with other conditions such as Down syndrome, Aarskog syndrome or fetal alcohol syndrome.

{Door With A View}

View out my front door.

'Mornin.

 



{Love Thy Brother.....}

It's been one of those days.  The boys all bugging each other, fighting, screaming, crying, teasing, taunting...... 

CONGRATULATIONS, BOYS!

You've earned yourselves some "Practice Time"!

They had to sit on the couch with their arms folded, feet on the ground, and no talking.  In order to get off the couch they had to do it for 10 minutes.  And once they did it for 10 minutes they had to write down 20 things that they could say or do that would be nice for their brothers.

It took 30 minutes for the first kid to get off the couch, 40 minutes for the next, and 45 for the last kid.  It was just too hard to sit there and not to be able to put a jab in or kick someone.

 After they made they made their lists we went over them.  Isaac decided he was going to start saying please and do better at sharing, and Owen decided that he was going to say thank you and stop slapping.  Slapping?!  Apparently he has slapped Isaac a couple of times while fighting.  The things you learn as a mom.  Well, I'm glad that he chose that one to work on!  And Gavin, bless his heart.  When his 10 minutes were up I told him that he could go make his list.  He sat there and said, "But I can only think of 3 things."  Unfortunately, he had to sit there a little bit longer.  Finally I told him he only had to write 10 thngs, which caused a rift with Owen.  But somehow that kid snuck off and fell asleep for the night getting off the hook....

We will see what tomorrow brings.  My boys LOVE IT when I make them do practice time.

Finn had his sleep study done last night.  We were to be there at 8:00 p.m.  It was downtown at Primary Children's Hospital.  In order to get there on time I needed to leave by 7:00.  I left at 7:10, and had to stop and get gas.  As I got on the road, I realized that I forgot to grab my phone that was charging on the counter.  I couldn't turn around as I was on a one way road, and if I did go back, I would most likely be late.  I didn't go back.  BUT anxiety set in.  A whole night without my phone.  Was it possible?  It was the feeling you get when you realize that you forgot to pack your makeup bag for a trip.  I wouldn't be able to call or text Kurt.  What if someone needed to get a hold of me.  What if I wasn't allowed to use my laptop and my phone would have been my only saving grace for an entire night of sitting in a dark room with absolutely nothing to do?  I don't even have a data plan on my phone, but I think I'm addicted to having it with me at all times. 

We got there at 7:55-right on time.  Parked next to me was a suburban with two gentlemen sitting in the front seats wearing suits and ties and they were praying.  I didnt' want to disturb them, so I stayed on my side of the car (as they were parked on the passenger side) and gathered the diaper bag and all of my "toys" (minus my phone)  and waited for a couple of minutes to see if they were finished.  They weren't.  Finn was on the passenger side, so I had to go right next to their car to get him out.  You could tell they were fervently praying.  I got Finn out as quietly as I could, shut the door, and began to walk off; but not before glancing out of the corner of my eye to see if they were done.  They were not.  They were still praying.  It made me think.  Who were they praying for.  Was it a child.  A parent.  A friend.  From the way they were praying, I would say something serious was going on.  You could feel the reverence as they both sat there with their heads bowed, eyes closed, and the person in the driver seat offering the prayer.

Once checked in, we were taken to our room where they began to prep Finn for the night ahead.  They first used this jelly like substance followed by some Crisco looking paste to put all the electrodes on him.  There were 26 electrodes in all.  He had them all over.  After they got them all on they put a mesh cap on this head so he couldn't pull them off, then they taped all of the wire strands together so they weren't all over the place.  They then placed a cannula in his nostrils.  I fed and changed him and then he was out.  He slept through the whole night, I didn't have to pick him up once.

Once he was out, I ran to the cafeteria to get some dinner.  I hadn't eaten yet.  I got there with 2 minutes to spare, as they closed at 10:00 p.m.  Once I finished eating I returned to Finn's room and played around on Facebook for a while, and then got caught up on missed episodes of Project Runway.  At 2 a.m. I put my laptop away and tried to get some shut eye.  I was sleeping on one of those fold out chairs that they have in the maternity wards for the husbands to sleep on.  They. Are. Not. Comfortable.  At 5:00 a.m. I woke up and just sat there watching the monitors wandering what all the squiggly lines meant.  At 6 a.m. on the dot, the sleep techs came in and we were done.  It was time to get all the electrodes off and we could go home. 

To get the tape off that was holding the electrodes on was like pulling off a band aid.  It hurts, right?  Well, Finn screamed and cried.  When they got them all off, he looked like a ball of butter.  We all know what butter is-GREASY.  What they didn't tell me in the preliminary details was to bring your ugliest outfit and your cruddiest blankets because they would most likely be covered in buttery, Crisco like goo and will probably get ruined.
 
We won't get any test results back for 8 to 10 weeks.  Apparently there is only one person in the entire valley who interprets the sleep studies done at Primary Children's Hospital.  ONE!  and she has her own private practice as well.  And so we will wait.  Finn is being tested for sleep apnea-where the body stops breathing for a period of time (which I don't think he has). I think he has an obstruction that is blocking his airway causing him to stop breathing for brief periods of time, such as his tongue or adenoids.   

{Awww Crap.}

I took Finn in to meet with his ENT today.  We were hoping that the meds cleared up the fluid in his ear and that he could hear.  Well, the meds did clear up the fluid in his ear.  Yay!  BUT after taking another hearing test,  he failed in both ears.  So sad.  Basically he has hearing loss.  How much?  We don't know.  He is scheduled for an extensive hearing test where he will have probs hooked up to him that will test brain activity and a bunch of other stuff, and it will be able to tell just how much he can hear. 

I kept asking the Doctor a bunch of questions, and he didn't like me jumping to conclusions without having the results from the upcoming hearing test to be done.  Here are a couple of things that I gathered from our conversation- It is highly likely that Finn could have hearing aids.  If he has nerve damage that he was born with he could have permanent hearing loss and there is no fixing that. 

I have confidence that he will be able to hear out of his right ear.  It may be with the help of a hearing aid, but I believe that he will be able to hear out of it.  The left ear...... I don't know.  I'm not so confident about that ear. 

I swear when I took these pictures that he heard me talking to him.  At least I like to think he heard me talking to him.  I still can't believe that he hasn't been hearing me all this time.  It makes sad.  I had my moment, (thanks for the listening ear Emily K.) but I'm over it.  I'm not going to freak out until it's time to freak out.

Now if someone at the audiologists desk would answer their dang phones so I can schedule the appointment......

{Slack Line}

Kurt spontaneously purchased a slack line on the internet.  We just got it yesterday and have put it to good use already.  Last night we took it to a park where we hooked up with some family, and today he hooked it up to the neighbor's trees and had the whole neighborhood over to try it out.  Although I haven't tried it yet, it's harder than it looks.  We haven't seen anyone walk across the entire thing yet. 

{Sleepy Head}

I LOVE Sunday naps just as much as the next guy, but COME ON!  If you're gonna snooze at least do it somewhere comfortable.   

If he's tired enough, this kid can konk out whenever and wherever.  I found him slumbering away at the kitchen table today after church.

Although these next pictures aren't of Sunday zzzzz's, sleeping in these places any day of the week has got to be miserable.

I'm super tired, but I don't want to stop playing.  I'll just take a quick cat nap right here on the back porch.  Who needs a bed when you've got wood planks and ants?

And

I'm so hungry, I'll just lay here on the hard tile floor by the pantry and eat my cereal where it is easily accessible.  (What you can't see in this picture is the bag of cereal that he had been munching on.)

But this next picture takes the cake. 

Talk about miserably uncomfortable.

This was taken a couple of years ago.  Looks like Gavin's head got in the way of Owen's feet.

Let's get a close up.  HA, HA!

I guess if you're tired enough it doesn't matter where you sleep or how miserable you are.  Sleep away.  Zzzzzzzzz.

{All Smiles}

He can hear me! At least I'm pretty sure he can hear me. Click here for a preface.  I think his meds are clearing up the fluid in his right ear because he was all smiles today when I was talking to him.   It is the cutest thing.  He is responding with smiles.  Yay!  So Happy!!!

{Smokin' Hot}

We're on fire again.  This is the 2nd fire we've had this year.  We are on evacuation alert, but have been told not to panic.  I personally don't think it will burn too far down the mountain.  It sure has been smokey.  It has also drawn a lot of  attention from the community.  Neighbors you never see have been spotted out on the corner keeping tabs on the progression, and cars pulling over on the side of the road to snap pictures. 

Looking at the time progression of the above photos, you can see at 3 p.m. that the fire was really burning, and by 7 p.m. the fire has receded.

Above:  Channel News 4 on their way to cover the fire.
Below:  They made our church parking lot the staging area where firemen, policemen, and work crews were stationed.

For Young Men's/Young Women's we ended up going to a park to do relay races.  We were out for just over an hour.  When I got home, I smelled like I had been camping.  I hate it when my hair smells like smoke.  Yuck!

I went to check the fire tonight at 10 p.m. and it looks and smells like they got it out (or at least they have it contained).  The wind was on our side and it was blowing to the south east which kept it from coming down the hillside toward the houses.  And while we were at Mutual, it sprinkled a little bit.  It has been interesting to watch and to see just how powerful these fires can be.  Sure makes you think about how prepared you are in case you ever do get evacuated. 

{Pretty Trashy}

Once a year our city puts large trash containers out on every street so people can get rid of their large ticket trash items.  This was our chance to get rid of the large huge rocks that lined our flower bed.  One by one Kurt dug them up, loaded up the wheelbarrow, and chucked them up into the dumpster(s).  This was no easy feat as most of these rocks were pretty large.  Our neighbor must have felt sorry for Kurt, because he came out and helped him.  Thank goodness!  There was no way Kurt could have done it himself.  And I was useless.                                                                                                              
After chucking about 20+ rocks into two of the dumpsters, my neighbor, Melissa, told me that last year my other neighbor was told that he had to retrieve all of his rocks and dirt that he threw in the dumpsters because he had put so much in them that they could not lift the dumpsters up onto their trucks to move them.  GREAT!  There was no way we wanted that to happen to us.....

Here's Kurt and our neighbor, Jeremy, getting the last rock.  The biggest of the bunch.  As you can see it is huge.  It's as big as the wheelbarrow.

After they got it into the wheelbarrow, Kurt asked around the neighborhood to see if anyone needed a prayer rock.  Ha, ha!  He didn't get any takers.

They ended up recruiting another neighbor to help them heave it up into the dumpster.

They almost dropped it in that third picture.  Yikes! 

The next morning when the city came to pick up their containers, I peeked out the window to see if they were able to load them onto their trucks.  YES!  They got them.  We would not be retrieving our trashy rocks.

{Stretchy Ponts}

Or Pants.

Thank you Nacho (Libre') for your influence on my children.

I will forever be grateful for your inspiration of creativity.

We have an abundance of Nacho-isms which entertain us to no end.

Stretchy Ponts are one of the many that we get to experience.

Lucky Us!



Good Morning!

{Dr., Dr., Dr., Dr., Dr.}

My ode to the movie Spies Like Us.  This is what my life has been like this week.

It all started with a visit back to the hospital so Finn could have his hearing screened which should have taken place when he was born, but he never got tested as their machines were down.  After a mistake made by the nurse of writing down the wrong date, he was finally tested Monday (7 weeks later).  It took about 10 minutes and we had confirmation of failure in both ears.

Before getting screened, I knew he wasn't hearing out of his left ear, but I knew thought he could hear me out of his right ear.  When I saw that he failed both ears, my eyes welled up with tears.  The tech said that we could do the test again, but I told her no.  We went home and made an appointment with an Ear, Nose, & Throat Doctor. 

That same day after getting his hearing screened we also saw the Doctor of Cardiology who did an EKG.  The results showed that the right side of his heart was enlarged due to either volume of blood or pressure.  It also showed that the hole in his heart was about 3mm.  We discussed that his waking up while sleeping could have something to due with his lungs, which could be linked to his enlarged heart, and so we have an appointment scheduled with a sleep doctor for a sleep evaluation and then a sleep test to see if he has sleep apnea.  We also have an appointment scheduled with a pulmonologist to check out his lungs. 

Two days later we got in to see the ENT Doctor.  He checked for fluid in his ears, which is what I thought it was and hoping it was, as alot of children with down syndrome have fluid in their tiny ear canals blocking any vibration.  Usually putting tubes in the ears fixes the problem and hearing resumes.  The Doctor told us that he had fluid in his right ear, but no fluid in his left ear.  I immediately knew what this meant.  It meant that since there was no fluid in his left ear that there is some degree of hearing loss in that ear.  To what extent, we don't know yet.  The fluid in his right ear has created some hearing loss as well.  I do know that he can hear somewhat out of his right ear, because when Kurt plays his guitar he kind of perks up.  He can also hear when the kids yell.  So we have him on antibiotics to clear the fluid in his ear, then we'll go back and make sure it cleared, then we'll put tubes in both ears, then we'll go and have his hearing tested to see the if there is hearing loss and to what degree.  It's a process.  It is sad to know that my little boy probably hasn't been hearing me talk to him for the last 7 weeks. 

This morning we are on our way to see the Doctor of Pulmonology. 

It seems like I've been on the phone non stop for 3 days to make sure that all the doctors are in our network and the tests they are doing are covered through our insurance.  Although it's a pain, I am grateful that our deductible has been met and everything that is and will be taking place over the next several months will be paid for.  I am also grateful for technology.  It is so cool what technology can do.  It's actually pretty amazing. 

We are on our way to getting our little guy the healthiest he can be.  He continues to be a sweetheart, and is a great baby.  He is getting big.  He is up to 11 pounds and just started requesting 6 oz. of milk instead of five.  Here he is sleeping peacefully, which will be interrupted by a quick shortness of breath, and then no breath, and then catching his breath, and then back to sleeping peacefully.  I love how he sleeps with his arms up by his head.  He's not one to have have them bound and swaddled.