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!  

Maebry Girl is 18 Months

 

I have been putting off taking 18 month pictures and posting about it, because I wanted her standing and walking in her 18 month pictures. Well, she will be 19 months in two days and she is still not walking! Haha. I just decided to snap a picture of her today and write a post about what she has been up to this month. I will probably do 4th of July pictures soon, and I will just count those as her pictures!

What can I say about little Mabebry girl? She makes me happy. She makes everyone happy. She is a ball of energy. She does the cutest things. She will talk to anyone. She is definitely my little social butterfly. Maebry loves meeting new people. She is still pretty dramatic.

Maebry has taken after her brother in the way of always wanting to be outside. She loves to play outside with her brother and the puppies. She loves to dig in the dirt and play in water. It's almost a joke to give her a bath sometimes. Sticks are still her favorite outside toy.

She has been sleeping and eating a lot lately. I feel a big growth spurt coming on.

Like I mentioned, she is still not walking. She could if she was more of a risk taker, but she is just a super cautious little gal. I have seen her stand up and balance without assistance, and she walks around if she can hold on to something. She just won't take the plunge and try it by herself. We have a PT coming once a week now to help out, but even the PT recognizes that it's just Maebry being stubborn and cautious. I am definitely ready for her to walk! It's too hot outside to crawl around, and she gets really frustrated when she has to wear a dress or fuller shirt. She also stands up every chance she gets, so I feel like she is close!  

She loves to play "tatch" (catch) with a ball, pretend to drink from cups and salt shakers, play with brother, play with the little kitchen, color, and splash.

Her favorite game is having people mimic what she does.  

My favorite words she says right now are catch, splash, and turn (when it's her turn).
She repeats words all the time, and calls Paxton "Pa!"
(I put an exclamation point because she seriously gets so excited to be around her brother.)
She is always trying to hug and kiss Paxton, and it melts my heart to see them playing and laughing together.

Maebry loves to snuggle, giggle, and play with friends.

She gets more fun everyday, and I love seeing more of her personality coming out.

She is just the sweetest and our bright little sunshine.

 

We love you Maebry girl!        

Easter Pictures

I took some Easter/Spring pictures of the kids today. 

I made Maebry's dress and headband a month or so ago, 

and I have been dying to get pictures of her in it.

I made Paxton a matching tie, and got him a light pink shirt to match his sister's dress.  

It was a pretty cloudy day and even ended up being a little chilly. 

I also trekked through mud quite a few times to get these pictures.

Paxton wasn't happy about the cold wind, but Maebry didn't seem to care.  

  

 

She found a stick and didn't seem to care about anything else.

Lately, she is really loving sticks.

She held on to this one through most of the pictures, and she got mad when I tried to take it away.  

She was also digging through the mud and pulling at plants and leaves.  

I gave her a flower thinking she would ditch the stick...nope.

She ditched the flower. 

Paxton started to get upset because he wanted to go home (see the big tears?), 

but I bribed him with candy to stay.  

His taffy is in the next few pictures. 

Whatever works. 

Lately, whatever brother has, Maebry needs too. 

I love my little sillies. 

I pushed the kids in the stroller to our next location...and the stick came too. 

I was pretty limited to the poses we could do since Maebry refuses to stand/walk.

She also doesn't want Paxton to put his arm around her....or touch her. 

I stood her against some doors, but she was mad at me and wouldn't look at the camera. 

Hahahaha.

More sticks!!

I am really loving these pictures.

We are so blessed to have these kids in our lives. 

Ramblings about my Ragamuffin

I took some sweet pictures of Maebry a few weeks ago, 

and I'm just now getting around to posting them.

I am posting them because I miss her. 

She went to bed for the night a couple of hours ago, and I miss her. 

We have been super inseparable lately. 

Well, we have been inseparable since birth actually, but lately she just gets me. 

I could spend all day just sitting with her in my lap and listening to her talk to me. 

I took these pictures one evening before she went to bed. 

She looks like a little ragamuffin in her PJs with her crazy hair.

You can even see a piece sticking straight up in the air.  

She was just having so much fun watching the doggies. 

I had to get the camera out. 

A few minutes ago, Ben said he could hear Maebry awake in her bed.

I went in there all excited that she may be awake, and I could snuggle with her. 

She was asleep. 

When she is sucking her thumb she will periodically switch thumbs.

It's really cute how she seems to change her mind about which thumb is the one she needs right then.

(I tried to get brother to be in the pictures, but he wasn't having it.) 

She has the cutest "excited crawl."

She will get the cutest expression, speed up, and shake her head, while giggling.  

Her kisses are the open mouth kind. 

She just kinda comes at you with her mouth open. 

If she is crying, she will stop immediately if I sing her "pop corn popping."

I have definitely shown off my horrible singing abilities in a few public places. 

I have to do all the motions too or it's just not good enough. 

She was copying her brother karate chopping the other day.

He says "Chop Chop Chop" as he chops you.

She saw it and did the exact same thing...to my face...while saying "Cha Cha Cha!"

She spends so much time going through our bed side tables. 

I, in turn, spend so much time putting all the contents back in. 

I could baby proof them, but she it keeps her so busy taking out everything and examining it. 

She has no interest in iPhones or tablets.

I was able to keep Paxton so entertained when he was that age, and I was shopping.

Maebry just throws the devices I give her. 

I let her turn off every light as we leave a room. 

I am usually holding her, and so she will just reach over and flip it off. 

I let her try my Chex Mix the other day.

She just sucked off all the seasoning and spit out the chex and pretzels.

I have another picky eater on my hands. 

She is so quiet when she wakes up in the mornings or after naps.

I have to check on her to see if she's awake. 

I usually find her with her legs in the air quietly jabbering. 

She has started pulling off all her headbands. 

It is really hard to keep them on her for extended periods of time. 

And bath times are her favorite times.

There are some ramblings about my little ragamuffin. 

I love her so stinking much, and I want to remember all these little quirks.  

She is definitely one of a kind!