The Complete Ear Explanation

I figured it was time to do a Paxton update, and explain what has been going on lately.

So, here is our update, complete with a busted lip, messy hair, and dried snot pictures.

Hah, we are just keeping it real.

(He is still amazingly adorable though.)

Starting at 18 months Paxton has been going in for regular ear/hearing checks.

He started getting really quiet, not responding, and no new words.

After surgery to place tubes (ended up being twice) his hearing got better.

The tubes drained the fluid that was building up in his ear, causing his hearing loss.

[I'm sure most of you have read this story in previous blog posts.

I just thought I would catch everything up.]

We have been to multiple multiple hearing tests throughout the years.

He has also been in speech programs since this all began.

We have done multiple ABR tests at Texas Tech.

The ABR test is a very extensive hearing test that also gets data while the child sleeps.

(This requires no participation like all the other testing.)

We would have to wake him up super early (4am ish), and take him in around 9am ish to do testing.

They did many different hearing tests, and finally,

they let him fall asleep while they continued the testing.

They hook him all up with wires, and as he sleeps they play different sounds.

If his brain responds to the sounds, that means he is able to hear it.

All along these hearing tests have said "possible hearing loss."

He has done better on some tests than others,

but overall his hearing was never "bad enough" to warrant any other interventions.

We had asked about hearing aides before, but overall his hearing was never at that level.

So, fast forward to recently...

Paxton has made huge improvements with his speech.

He understands way more language and is able to communicate so much more.

However, despite his huge progress, he is still not very understandable.

I understand him because I am used to it, but others have to ask what he is saying.

When we went for a routine hearing test recently,

the audiologist had him repeat words back to her.

She had never done this before, and she noticed he was leaving off the end off all his words.

Example: instead of nose he was repeating no.

She mentioned that this is very indicative of hearing loss.

I had noticed he wasn't saying words correctly, but this had never been suggested to me.  

When we met with his ear Doctor right after the testing he had us schedule another ABR.

So, we did another ABR test.

I have to admit, I had a bad attitude about another ABR.

Those tests are such a hassle.

They take forever, frustrate Paxton, and make for a super exhausted Mom and kid.

We had done them before with the same results, 'possible hearing loss.'

My reaction was, "Why do we have to go through all of that again only to be told the same thing?"

Well, that wasn't the case this time.

 

Before the day of the appointment I said many prayers, hoping it would go smoothly.

I wanted answers and a plan of action.

On the day of, before the actual sleeping test, we did a ton of different hearing/ear tests.

During that time, Paxton was very cooperative and able to participate better than ever.

( I will add that the student helping the Dr that morning was exactly like Paxton's Uncle John.

He was fun, outgoing, and Paxton warmed up to him right away. 

Paxton loves his Uncle John, and so I considered it a blessing to have that student there that day.

Paxton isn't the fastest kid to warm up to people, and it's hard to do the tests with a super shy kid.)

Anyways. the Dr doing the tests mentioned that she was getting

very little response when using high pitched sounds.

She would play beeps in his ears and ask him to feed a puppy toy when he heard the noise.

He was very consistently feeding the puppy until she got to the higher pitches.

Finally, we had more specific results!!

After figuring that out, she was able to focus her testing on more specific things.

Paxton did get a little frustrated towards the end of the testing and started crying.

It was sad because he is such a sweet, patient little boy, but he was sooo exhausted!

Finally, they let him sleep, and the sleeping results confirmed what the Dr thought.

Paxton was not hearing much of anything in the high pitch range.

The testing showed that he is hearing most other sounds quite well.

His hearing looked to be better than ever, except for a certain range of sounds.

That would also explain why he's not saying the "p,sh,s,th..." sounds,

because he isn't hearing them.

  

That is why we chose to go the hearing aid route.

They are able to program his hearing aids to amplify those high pitched noises he's missing.

Has his hearing always been this way?

We don't know.

He is older now, and he was able to participate in the testing way better than before.

Try explaining hearing test participation to someone who has very little vocabulary.

It is definitely not easy, but he is getting much better.

His hearing could have always been this way on top of the fluid buildup.

He did receive a ton of antibiotics when he was septic as a newborn.

I tend to think his hearing issues have stemmed from that.

But, we really don't know for sure when this high pitched loss started.

However, now we can do something about it!

We got his hearing aids last week!

The amplifying part of the aid lays over his ear, and the other part goes inside his ear.

It hasn't been a totally smooth transition, but Paxton is one easy going kid.

I think the bumps were Mama not quite getting it yet.

The aids will be high maintenance, but I am so glad we did it.

Now, we just need to get Paxton's speech where it needs to be.   

 If this long journey has taught me anything it is patience.

Some things you can't fix overnight.

Some things you can't even fix in a year or two.

We definitely haven't done everything perfectly, and we probably made mistakes.

However, we also have never been through something like this.

I really knew nothing about hearing loss, hearing aids, testing, ears, or resources before this.

I hope that this whole thing has made me smarter, more patient, and more aware.

 

It has definitely made me more aware of what an amazing boy we have.

He is patient, loving, forgiving, happy, optimistic, easy going,

and sent straight to us from a loving Heavenly Father.

 These issues have also made me more aware of the power of prayer,

the power in relying on God, and the fact that He knows of our struggles and knows us individually.

I know without a doubt that my sweet Paxton will get to where he needs to be. 

(And it's ok if it doesn't happen on my timeline!)

So, here is to hoping these hearing aides make a huge difference in his speech.

I was thinking about all the words and names he says funny now,

 and how I will miss them said that way.

BeeBee-Maebry

Tawtee-Paxton

Beyah?-Better
ToeTette-Cosette (his cousin)
Yuh You- Love you
You're my Beh Frien- You're my best friend
Enter- Spencer (his cousin)
(This one is funny because I will hear him calling, "Enter! Enter!,"
but Spencer won't answer because he doesn't know he's being called!)

 Just to name a few.

Paxton will also add a lot of gibberish to his conversations that tend to confuse people.

A little boy asked me if he was speaking Spanish the other day.

"Yes, he's speaking Spanish," was all I could get out while laughing.   

Did you notice his sweet monster he got at his ear appointment today?

I found it hanging on the back gate later.

Also, his puppies just love him so much.

It was really hard getting pictures of him without dogs in the way!  

 

PS- I would feel very ungrateful if I didn't thank our friends and family for being there for us, and listening to me cry about it all. Thank you Pman's teachers who love him and are patient with him. And thank you to everyone else who has been there for us through this. We seriously love you guys and owe you everything! We couldn't be doing this sanely without you!