It's Official.

Harlie has moderate hearing loss.

There. I said it.

I am definitely bummed. Disappointed. Frustrated. Ugh.

I see the good things. We know. Therefore we can address it appropriately. And it certainly explains our difficulties with her behavior. And they do make hearing aids. And it's moderate loss - not complete loss. I am thankful for all those things. Trust me.

But c'mon! When am I going to stop learning about stuff that doesn't work right? And now I have to learn a whole new body part and all the details that go into how it is supposed to work, and why it doesn't work with Harlie. And there will be more appointments, more specialists, and more equipment. Super.

Yes, I'm whining.

For some reason, I really believed that she would get the tube, and that her ABR test would say she was perfectly fine. I really did.

But I guess that was more hope than belief.

So, here were/are my questions...

How could she pass the newborn hearing test with moderate loss? The newborn screening test is supposed to catch that.

Did they do the test - or was that incorrect information? Those first weeks were very busy and very crazy. Maybe it just got lost in all the flurry of tests and surgeries?

If they did it, was it done correctly? If so, did she have good hearing then, and it progressively got worse? Why? Could it continue to get worse leading to complete hearing loss?

Is this loss conductive or sensorineural? Or a little of both?

Most of my questions will never be answered. Nothing new, really. That seems to be the case with so many things about Harlie.

The audiologist that performed the test will get me a full report soon. Then I can read more about the specifics of her hearing loss. I think she said that she showed some sensorineural loss (which is damage to the nerves and is a permanent loss). But, I can't remember exactly what she said. We covered a lot of information in a short period of time. The report will really help me process all of this.

The good thing is that she said a regular hearing aid worn on her right ear should help her a lot. We'll have to get her a BAHA on her left - and we have to wait till she gets bigger for that. They anchor it into the skull, so the skull has to be a certain thickness.

So, I read this and wow, is it easy to get depressed over this!

But I won't. I can't. I need some time to process it, of course. Learning that your child has a disability is never easy. No matter how many things I've gotten over, I don't think it gets any easier. But, she's been receiving speech therapy since she was 14 months old. And we started using sign language at 16 months old. So, it's not like we haven't been addressing her language and communication challenges.

I will say that my faith in her intelligence is restored. With all of the issues we've had with her not cooperating, following instructions, etc. I was starting to doubt her capabilities! But, the fact that she's had three wonderful speech therapists in her three years and we didn't realize that she had hearing loss, speaks for her intelligence. She's been able to figure things out using other means, keeping the fact that she couldn't hear under the radar.

I think part of my struggle with this news is that I thought all along that she had one good ear. I can't tell you how many times I have thanked God that she could hear. Even after her ABR test last summer (which also showed moderate hearing loss - but the audiologist said that if she had an ear infection, that could affect the results and she did have an infection and a granuloma had grown in her ear canal - so OF COURSE that was the reason for her poor hearing results). If I had gotten her another ABR test after her ear healed and a new tube was placed, we would have known sooner. She could have gotten a hearing aid MONTHS ago and who knows where we'd be now.

I don't know what she hears when we speak. And that bothers me. What do we sound like to her? Do we sound like the teacher in Charlie Brown? What does the world sound like? What does music sound like? Does she even hear the narrator in Curious George (her absolute favorite tv show)? So, now I don't know what she sounds like, and she probably doesn't know what I sound like. That makes me so sad!!!!

Hopefully a hearing aid will help all of this. Maybe that will make me stop being a big baby about this. I just hate that I didn't know. And when given a clue - I didn't believe it. Granted, I think I had good reason not to believe it. But, still.

Here's my post from a few weeks back when she had the regular old hearing test that showed moderate hearing loss (that I still didn't really believe) with a video to show what it might be like for her.

Oh my. I just looked up my old post from when she had the ABR done last summer. It said she had MILD hearing loss. And that was WITH a blockage in her ear canal! What does that mean???? Does that mean that her hearing loss has been progressive?

Oh no. I gotta stop thinking about this for a while.

Another early appointment

Just a very quick one tonight since I have to get up at an un-Godly hour. We have to be in DC (at least 2 hours away) at 5:45am!!! So, we'll be loading a tired little girl up at 3:30am and hittin' the road.

Tomorrow morning is Harlie's ear tube placement and Auditory Brainstem Response Test. Hopefully this will answer her hearing capability questions - for good.

Life with Harlie has been very challenging the past few months (heh - okay, the last few years) not knowing what she can hear or not hear. Is she ignoring us? What does she understand?!?! She seems to be challenging me at every opportunity. And she is wearing me down.

All I have to say is if this tube helps her hear - and her ABR test comes back with normal hearing in her right ear - well, play time's over, Sister!

I'll let you know how it goes...

Goodnight!
~Christy

The Tooth Fairy

made her first visit at our house last night.



I think the Tooth Fairy is pretty cool. She brought Murphy a dinosaur coloring book and a light-up toothbrush. It blinks for 60 seconds so he knows how long to brush.

He's very happy.

Oh, where does the time go? He was so little not long ago.

Half Marathon Results

I am so happy with my first half marathon! My goal was to complete it in two hours. And to be honest, I was thinking that was kind of lofty (which is why I didn't share my goal in my previous post). That's a 9:09 pace. And that's pretty fast for me (for now).

So, I wrote down some goal times (what time I needed to hit certain miles) on my arm so I could glance down and see how I was doing throughout the race. I couldn't believe it when I saw that I was right on track to hitting my goal time!

In fact, I BEAT my goal!

I finished at 1 hour, 58 minutes and 45 seconds! That's a pace of 9:03 per mile!!! I am completely thrilled!

At mile 5, we entered into Bryan Park. And as I was coming around the corner I saw Tom and Murphy - and then my wonderful friends Melissa and Matt and their two girls!! They drove up from Suffolk to surprise me and cheer me on. I was so happy to see them all! And the best part was that we ran through the park and then came back out the way we went in, so I knew the whole time I was running in the park that I was going to get to see them again. That was so uplifting! I think the park was the most difficult part of the course. It was the most hilly, I think.

This is me (blue shirt, white visor) leaving Bryan Park, waving at Tom.



Then shortly after the park, I saw my friend Bethany and her boys. What a great supporter she is! She's a runner, so she knew all the right things to say. In fact, right after we passed her someone running next to me said I had a great cheering section! It was absolutely wonderful to have so much support!

My bib had my name on it, so I would hear people shout my name and say "Go Christy"! It was great! And I wore my Steelers visor. So people would yell "Go Steelers"! It was so much fun!

And a mom from my special needs mom's group (we have dinner together once a month) was on the coaching team for the training group. She rode her bike along the course giving support to the half marathon training team members. So, I got to see her a few times and got her support then, too.

It really was fantastic to have so much support. I was so grateful for all the people who came out (on a cold and drizzly morning) to support their friends - and strangers. There was one stretch (Brook Road) where the support was very thin - and at times non-existent. What a difference it makes to have people cheering for you.

And at the finish, I saw my parents. Unfortunately, I didn't see them until after I finished. But they saw me and they said that they were screaming my name. But, by that time I think I was in such a zone. I saw the time clock on the banner and I saw that it was going to be close to beat the 2 hour gun time. The gun time is when the race officially starts. But, you wear a chip on your shoe to record your personal time, since it takes a while for you to get to and through the starting line. I knew that if the gun time was 2 hours, that I had to be under that, since it took at least a few minutes to start. I crossed the finish line at 2:00:00. It was awesome.

Here's me coming into the finish...







See my name on my bib? Very cool.





After the race we went home and dropped off the kids and the dads and Melissa and I headed back out to support our friends Heather and Neal. They ran the full marathon. We went to Brook Road, since I found that to be the area that was the least supported. And it was around mile 22/23 - so I figured they could use a boost from friends. It felt great to support them. They looked great and had great finishes (4:31 and 4:35).

Natalie, me and Kelly at our celebration dinner that night. I had a great time. I laughed till my stomach hurt. I love nights like that!



Our waitress was not the best. After she introduced herself, somehow it came out that we had run the half marathon that day. She said with much excitement "OH, you ran the marathon"?! We, of course, corrected her and said "No, the half marathon". Then, looking utterly unimpressed, she said "oh. Well, our specials are..." Nice.

So, that's it. I had a great time training and completing my first half marathon. I think I might be addicted. I will definitely run another one. And, if I can find the time, I think a full marathon could be in my future. We'll just have to see...

Thank you to all my supporters! I couldn't have done it without you!

My First Half Marathon

I hate it when I can't blog for days. It is my therapy, after all. But then so many things happen and it takes me forever to tell you about it. And I don't have time to get you all caught up tonight.

But what I do want to talk about is my first half marathon. Tomorrow. 13.1 miles.

I joined a training group and we started our training program the first week of August. All those weeks of training come down to tomorrow. That can feel like a lot of pressure. So, it's easy to get disappointed when things don't go exactly as you imagined, or planned. And our accident last weekend (on our way to our training run) brought that to light. What if that happened when we were on the way to the RACE?!?!

After the accident, Natalie and I were talking and she said that she thinks that the training was the true accomplishment, and the race is just a bonus. What a great approach!

So, it's bonus time and I'm hoping it's a GREAT one! I'll let you know tomorrow!

Thanks,
Christy

We have another surgery date.

Late Friday afternoon, I got a call from Harlie's plastic surgeon's office. She said that Dr. Magee had a cancellation and he could do her jaw reconstruction on, gulp, DECEMBER 9th!!!! We were thinking this surgery would happen sometime around February.

It's just kinda weird to think about it being so soon. Maybe I'm in shock. I need time prepare - mentally. And right before Christmas?! We were supposed to go to Pittsburgh the week before Christmas. Now that won't happen. There's no way she'll be able to travel that soon after surgery.

But, I don't see how we can pass up the opportunity. And I guess it's a good thing that I won't be able to spend the next several months thinking about it.

Yep, that's a really good thing.

Luckily, Tom's mom can come down to help us with the boys. And it's better for Tom's work schedule to do it in December vs. February. So, hopefully that means he can stay with me the whole time she's in the hospital. If I remember correctly, she was in for just about three days last time.

Uh oh. I just realized that she needs to get that G-J Tube before she can have the jaw reconstruction. Hmmmmm. I wonder if I can pull that off. I think they do it radiology? So, maybe that will help? Ugh. That will definitely be the first call I make on Monday.

Anyway, so early this morning my friend, Natalie and I were on our way to meet our running group for our last pre-race run, when we were rear-ended at a red light. We were just sitting there chatting and BAM! There was no warning. No brakes screeching or anything. Which, honestly, I think was to our benefit. We were relaxed when we were hit, which I think is a good thing. His car was pretty crumpled and both his air bags deployed.



Natalie's car appeared to have just minor damage to the bumper. But when we drove away, there was definitely something going on underneath the car. We didn't make it to the run, which I guess wouldn't have been that smart to run right after that anyway.

We are fine, by the way. Just some lower back stiffness, which I really think will be fine in a day or so. Now we just have to hope that nothing like this happens on our way to the race! Missing the race would really be VERY disappointing after all the training we've done!

Well, that's it for now.

Take care,
Christy

More good news...

We have a date for Harlie's ear tube placement and ABR test!

It is November 20. Which, of course, is a Friday - a day I said I wanted to avoid being in DC. Oh well. When you don't have a choice, you take what you get. I feel lucky that it's this soon. I know that her ENT worked really hard at fitting her in his schedule - and then worked really hard trying to coordinate it with the audiologist performing the ABR test.

I am very anxious to get some concrete answers as far as her hearing goes. It has been frustrating not knowing what she can or cannot understand. Not knowing what your toddler can hear/understand has made parenting her more difficult than I can put into words.

And now that this has been brought to the top of the priority list - we are going to start the process to get her a BAHA for her left side - at least. Her ENT told me that getting her that aid will really open up her world. So, that's what we're going to do.

Anyway, just wanted to write a quick one while I had a sec.

More later!
~Christy