FIRST BOOTH TEST TODAY!

I have been so excited to come back and post this, but of course had to take care of my kids first! Imagine that! Anyway, we had an audiologist appt. today, one that I really thought was to meet our new audi and check Aiden's hearing aids. So when I got there I was shocked and so excited to hear we were going in the sound proof room - a.k.a. the "booth test"!


This test watches for behavioral reactions to sounds (for ex. any eye movement, starting/stopping sucking, head turns) with his hearing aids on vs. the ABR (which measures auditory brain response) without hearing aids. All I could pray was, "Please let them see some sort of reaction ... please God please!"


Let me just tell you, you are in this little room with padded gray walls and two huge speakers on each side. They gave me earplugs, which I asked if I really needed to wear and they said yes. I was too excited to realize I was nervous. I was trying not to get my hopes up knowing that Aiden's ABR showed no response at 110 dB - which is about at the loudness of a jet engine!

Aiden was hungry, but we held him off and gave him his binky. Then the voice came over the loud speakers ... and then louder ... and louder. It was just our audi calling his name "Aaaaaiden .... Aaaaaaiden", then "bop, bop, bop", and just casual talking to him. And we watched ... and the binky stopped ... and then moved real fast - the same reactions we see at home when we talk to him within his bubble, with hearing aids. At first I just blew it off, trying to think nothing of it.


When we were through, our audi came in and told me she saw responses too (the binky business) at 75 dB and 80dB, but none at 70dB (he just kept sucking on his binky...no stopping or fast fluttering of it). We also tested him without hearing aids, which again, no "binky" responses at any level.


I started to cry ... a bitter happy moment ... I was so happy that my baby showed some sort of reaction, yet was reminded once again my baby is deaf! I know the test is not 100%, but this gives us some hope his auditory nerve is there ... it tells me his hearing aids are working - even if it's just a little bit - HE IS GETTING SOMETHING! I'm so emotional over this behavior booth test, I can't imagine the day my binky boy gets his implants!


Now, just because Aiden showed response to some sound does not mean he can hear. He may have heard a loooong noise vs. a short noise, but still would not be able to distinguish what is being heard. Aiden is still deaf. Aiden will not be able to hear the sounds of speech without cochlear implants.


I included a picture of the speech banana below. The speech banana shows the conversational sounds of speech and at which dB and frequency level the sound is at (deaf/hoh can usually hear lower frequency sounds than higher frequency). If you can't hear the sounds of speech, it's very hard to reproduce them correctly. So with Aiden possibly hearing sounds at 75dB, with hearing aids, still does not even put him within the speech banana to hear speech sounds, BUT, to me, his mom, HE IS HEARING SOMETHING and that means so much!

To learn more about the speech banana and audiogram go here and here.

Visit to the Pediatrician

I took Aiden back to his pedi. on Friday for a few things, mainly his reflux, but I also wanted to check on this pin-sized hole under his double chin, a crusty eye, and the vestibular system.With doctor costs now-a-days, might as well get it all done in one visit!

Reflux - Aiden was taking Axid and I was using Good Start w/ iron (this was after he kept throwing up from using Prosobe and nursing), but the rivers kept on flowing each time I fed him. It gets pretty old having to change both of our outfits over 5 times a day. His dr. told me to switch to Good Start Soy plus she changed his medication from Axid to Zantac. Seems to be doing the trick! He's still spitting up, but just normal baby spit up. My fingers are crossed it stays this way! If not, they'll have to put him on a second reflux med. and I hate him having to take any at all!

Crusty eye - no problem ... just massage the gland and if it keeps crusting bring him back for antibiotics.

Pin-sized hole on his neck - This is known as Brachial Cleft Sinus. I had noticed it when he was born, but with everything else going on, kept forgetting to ask about it, plus it's hidden under his chin (on his neck). Every once in awhile it drains. His dr. was glad I pointed it out and wanted me to schedule surgery before our trip. She said it was like a step was skipped during development and this part of him wasn't "closed up". She wanted me to call the pediatric surgeon ASAP, but suggested I talk to my ENT first. Great, what else can go on! When I got home I called his ENT and they scheduled an appt. for us to come in when we get back from vacation (in 2 wks). They didn't seem to be as concerned and told me they do they've done these surgeries before. I also asked the pedi. if this was something related to any syndromes with hearing loss (we don't know the cause of Aiden's loss), and she said no ... so that made me feel a little more at ease. With all this said, it doesn't seem to be a big surgery, but no mom wants to see her baby go into any surgery, no matter what age, no matter what type! Go here to read more about it.

I'm telling ya ... this boy is going to be one tough cookie ... and so is his mama! With my other two I've only dealt with colds & viruses, maybe a bee sting here or there. Only time we had to go to the hospital was for their births! Oh well ... third ones a charm right?!

Defining Moments

Soon after starting this journey, a couple moms emailed me advice and told me, "Don't let this define your son and don't let this define who you are either", and I agreed. No way was this going to define Aiden and the person he is .... no way will I let it define who I am. But it was ... and these are the two things that made me realize it.

Trip to the American Girl Store
Kailyn isn't a big doll fan ... she's more of a stuffed animal, barbie fan, but she has been wanting an American Girl doll for awhile now (heck, I wanted one for her - I loved dolls as a kid). So I planned a trip with a friend and her daughter to spend the afternoon at the American Girl Store. For those of you who haven't been, it's a girl's paradise - just imagine, two whole stories of nothing but dolls and all their cool accessories - they even have a hair salon for the dolls and a restaurant to have lunch with them! I don't know who was more excited, Kailyn or me! After shopping around, we, I mean she : ), picked out Kit, from the new movie Kit Kittredge, An American Girl. She picked her because it really is like her twin!

Anyway, the reason I bring this up is because it was this day, after having so much fun with Kailyn (and Aiden in tow), that I came home and realized that I have been doing nothing but reading and research (what I call my new R&R) on deafness. Yes, there is SO much to read and learn and know, and DO, but I realized I needed to take a step back. I realized I was letting Aiden's deafness define ME, everything I did had to do with his deafness, I thought about it 24/7! It felt great to just let it go that day ... to not think about it ... to have my mind back and have fun with my kids. Now if I can just get that big boy of mine to spend some time with his mom ... guess I need to start playing some Guitar Hero! ; )

Aiden's in his own crib!
Yep ... at night too! First it was just for naps, but he has spent the last two nights there! No worries about hearing him! We wouldn't even need the monitor - he defninitely lets us know when he's hungry!

Moving Aiden up to his own room has really had an effect on me, in a happy feeling kind of way, like I have a whole new appreciation for my little darling, and myself. I really don't know how to explain it, but I realized I don't need to be so "protective" of him. I don't know if it's because he's my third (after 7 years of having a baby) or because he is deaf. He's no different than my other kids as a baby, besides the fact that he can't hear and I put hearing aids on him when he wakes up. My other two kids were in their cribs before they were even two months - Kailyn probably 2 weeks! Since he's been up there, something has clicked, in my nonstop mind, that made me realize everytime I looked at Aiden I thought about his deafness. I constantly thought about what had to be done to help him hear or what else I needed to research, or what I should be doing with him. Was it story time ... was it time to sing ... time to sit and make our animal sounds ... time for vocal play. I was letting his deafness define him. I remember saying in a previous post "he's more than his ears", and now I had to remind myself of that.

For the past few days I've just let it all go. I had to. What I discovered though is that I don't need to CONSTANTLY think about what else I can do to help Aiden, because by just being his mom, I am helping him. I've discovered that I'm making these animal sounds, doing vocal play, and talking to him all the time anyway, just like I did with my other kids ... and without the stress of constantly thinking "I HAVE TO do this or that". I already am doing it! He's getting the therapy needed by me just being mom - not a mom to a deaf baby - but a mom to Aiden, the same mom I was to Ryan & Kailyn. He is more than just his ears ... he's my precious little binky boy!

I feel sorta free again. Yes, I will continue with my R&R (reading and research) and of course I will continue with daily AV therapy with Aiden, but what I feel good about is that I have "fired" that "little nag" in my head constantly yelling at me "you have to do this ... or you gotta do that" because by just being mom, it will get done, and Aiden will be okay.

Now, I'm off to rediscover the true R&R ... rest & relaxation!

PS - For those of you who know me, know I may be a little O.C. (blows the whole theory above right out of the water huh?) But, I have been thinking of what I haven't really shared, and in future posts I'll explain more about the communication route we've chosen for Aiden (AVT - Auditory-Verbal Therapy), what I learned in therapy the past couple of weeks and what they believe Aiden can hear, things we're doing at home to help Aiden, and what cochlear implants are and how they work. There's so much I've learned that I want to share, plus it helps me better understand it all too ... okay, back to the real R&R ... I hear the pool calling our name!

Laughter is Key

Today, as I listened to Kailyn read baby einstein, Touch and Feel Farm Animals to Aiden, I laughed out loud as she made the horse sounds to him. As I laughed, Aiden turned his head, looked at me, and smiled (I was sitting sorta behind him to the left)! I've never seen him turn toward a noise, just reactions as we're face to face talking! I laughed one of those teary eyed laughs and responded back with a, "you heard mommy laugh!" and a huge kiss on the cheek! PROGRESS with hearing aids right!!!

Over the past couple of days Aiden is also starting to giggle, not quite those all out baby belly laughs, but tiny giggles. Before, he would just smile real big and I'd keep waiting for any sound to come out; I was getting scared nothing ever would. But they're here and I'm sure those big belly laughs are right around the corner! I can't wait!
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On another note, Aiden is three months old today. I took the big step and moved all of his things upstairs to his room ... I have to get him out of the bassinet in our room and into his crib and it's a hard transition (more for me than him I'm sure). I've done good so far though, he's on his second nap in his crib (aren't you proud of me mom)! We'll see if he makes it up there tonight!

HAPPY FATHER'S DAY!

My house is quiet this morning ... Aiden's back asleep for his morning nap, Mike's still sleeping (after a night of pig hunting with the guys), and so is everyone else! This is actually a treat to me as I have time to sit and reflect about the two important men in my life ... my husband and my dad.

My husband is an amazing father! I just smile when I watch him interact with our kids - each one in their own special way...

I watch him with Ryan - joking around, roughing him up, playing video games together, taking him hunting, coaching him not only in baseball, but about growing up and becoming a good man, coaching him about LIFE.

With Kailyn, he's so gentle, treating her like a princess, holding her hand, taking time to do things girls like to do, involving her with the "boy" things too, taking her to daddy-daughter dances, and teaching her now how a man should always treat a lady. She is definitely daddy's little girl.

Then there's Aiden, just three months, and I'm reminded all over again why I married this man. The way he holds him, talks to him, changes him, bathes him, is involved with him, everyday, every moment he gets. My favorite is seeing all six feet of him sleeping with this tiny little bundle on his chest. How peaceful. How precious.

And me ... I see how he believes in me, in our family, in our life. He reminds me everyday how Aiden will be okay, how we will learn together, how we will get through it, day by day. He is my strength. My best friend. My partner. My therapist ; ). My everything. Happy Father's Day baby.



-------------------------------------------------------------------------------------------------This is also the first Father's Day since my dad passed away in January. I think about him today and I want to cry, but instead I smile. He's still with me and so are all of the things he taught me that help me through this journey...

"Always give it your all, no matter what you're doing ..."

"Follow your heart ... follow your heart ... follow your heart"

Throughout this time, I think of my dad and I remember his words. This is not going to be a smooth easy ride, I'm going to make mistakes, I'm going to have those days. All I can do though is follow my heart with all the decisions that have to be made and give it my all, and I know as I go forth on this journey, I'll be able to look back and feel good about it, and today I know it will all be okay ...

Whole New World

I went and had dinner & drinks last night with one of my "bestest" friends, she's actually my sister I've never had. We always have the best conversations. I was telling her about my newest discovery with Aiden's world - the deaf community. After learning about Aiden's deafness, all I could think of was, he WILL hear and speak one day, and that's that, he will be a part of our hearing world. And hopefully he will (we still need to wait for the MRI to tell us if he is a true candidate for cochlear implants), but he is deaf and could also be part of a community that seems to have their own culture and I want him to know this part as well. As Aiden's family, we need to have a respect for this "culture" in a way we would respect the culture when visiting any foreign country. I'm still learning so much about this, so my big question now is, if Aiden is a candidate and successful with his implants and hearing/speaking, do we still teach ourselves and Aiden to sign or not?

Of course I have always known about sign language, but just that it was out there. What I've come to learn is there are different types of communication for deaf people. Sign language - American Sign Language (ASL) is not easy to learn and when translated word for word is completely different than spoken English, it's like learning a foreign language. I also didn't realize there is another type of sign, called SEE, which is more in tune with spoken English and is another option to teach Aiden and our family. There is an option to cue, which I don't know a lot about yet either since we have decided from day one that we want Aiden to hear and speak - this is the auditory verbal route. I'm still learning, so I'll fill in more about it later.

Before Aiden was born we discussed using baby signs with him for easier communication as a toddler. We saw our niece using these signs at 1 years old and were amazed at all the signs she knew and decided we would use it too. Little did we know that our child would be born with profound hearing loss and now we actually question the use of teacing him even basic signs. We question this because we are praying our child will be able to hear using cochlear implants and combined with the hard work of auditory-verbal therapy, he will be able to speak and listen. This therapy does not include any type of signing. In fact, it's suggested not to teach signing, so the sole focus is learning to communicate through listening and speaking, not signing (the implants don't just turn on a "hearing switch", it is very hard work to teach a deaf/hoh child with an implant to hear and speak and takes a lot of time and dedication, it's very different than teaching a hearing baby to speak, but the outcome is tremendous!).

Again, we are choosing for Aiden to get cochlear implants so he has the chance to speak and hear, that is our choice as his parents; we want our son to be a part of the hearing world ... but Aiden will always be deaf, there is no changing that and we have to ask ourselves how will we communicate with him when his "ears are off" or not working or if he chooses one day not to use them? We don't want to completely take away this "culture", this "community" even though we choose to (hopefully) have him implanted. As he gets older, we want to teach him all about the deaf community and the options he has and respect the decisions he makes, whether it's to communicate through hearing/speaking or through sign or both. At least we are lucky enough to give him the choice in how he communicates.

So for now, we will continue to work hard at our auditory-verbal therapy and pray that Aiden will one day speak and hear. But we will also continue to learn about this new world that has become part of our journey.

We're All in This Together

Aiden is amazing! We have really seen some great reactions from him this past weekend! We've had his hearing aids since May 27th, but the first week seemed so overwhelming and I just wasn't seeing any reactions from him; I refused to say he didn't hear us, yet felt an emptiness when he showed no reactions to my voice. Now, when I put on his hearing aids, his face lights up. He fusses at first while I get them on, but once they're on, he's all smiles! He's really been participating in some great vocal play too, cooing more and responding back to our voices! Kailyn loves to show everyone how he smiles and kicks when she tells him "I LOOOOOVVVVE YOUUUUU!" He definitely knows his sister!

I went out this weekend and bought a bunch of baby books and created the "Basket of Books" and set it in the living room. Everyone has to read him one book a day! Aiden loves them all, especially the ones with the baby faces! I love to see Kailyn & Ryan read to him. Ryan is very interactive making sure Aiden's looking at the pictures or takes his hand to feel the different textures of animals! I've even heard Mike talking to Aiden the "nutso" way I do, emphasizing our vowels and repeating every little noise Aiden does (you gotta admit, it sounds a bit crazy constantly repeating every noise a baby makes or narrating every movement you make, but after about a week, it's become normal household chit-chat.) It's great to see the whole family getting involved to help Aiden! We all know our goal and we're all getting there together!

Ooooo's and Aaaaaa's

We had therapy today. First one since summer break started. Kailyn had to go with me, which shouldn't be a big deal, but you have to know Kailyn. I love her to death, but she is quite the drama queen and loves every ounce of attention she can get and I was a bit worried about having to keep her under control while learning about Aiden's therapy. Most of the time, she sat and colored as she read (out loud of course) until she was invited to come join in and help! Best thing the therapist did, because now she was involved and felt important! She loved it!

Aiden was a ham as well! He really responded today! We were taught about his "hearing bubble" which is about 6 inches from his ear - this is the best range to keep within his ear when talking to him. Kailyn was taught how to speak to Aiden and stay within his hearing bubble and everytime Kailyn said"I LOVE YOU", Aiden would get a huge smile on his face! When he had his binky, he'd stop sucking on it ... our therapist said all of which are great signs he's responding to our voices!

So here's our homework for the week:
*Speak to him within his hearing bubble with good emphasis on our vowels. Lots of aaaaa's, eeee's, oooo's, and uuuu's!
*Everyone in the family will read one book a day to him (a baby book with lots of emphasis on vowels). I like this homework because it gets all of us involved.
*Pick a song of the week and really sing it throughout the week changing it up for each activity - we're working on Old McDonald this week - it's amazing how Old McDonald can change a diaper, give a bath, and burp a baby!
*Continue with our name game and listening walks.

Ryan says I'm a nut the way I talk to Aiden, but that's okay ... better to start practicing at home for the real world. I am sure there will be a lot of people out there who look at me as a bit cooky as I talk to Aiden in public, but it's for my baby and I'll do whatever it takes!

A Message From Above

Thank you all for your encouraging messages to help me through my "bad day"! It is nice to know that you all agree, IT IS OKAY TO HAVE A BAD DAY!

The most encouraging message came last night though. This is crazy and I think the Lord knew I needed to hear this. I was lying in bed trying to get Aiden to sleep and for some reason opened my cell phone ... it said "voice record". I thought "voice record? hmmm..." Then I saw there was a recording - Nov. 20, 2007 and I pressed play. I couldn't hear it too well and figured I'd hear Kailyn being silly, but then I made it out - it was my dad and me - a quick 10 second conversation, "Hi dad.", "Hi. Love you." "I love you too dad." CLICK. That's it. I had chills. I listened to it over and over - I was hearing my dad's voice telling me he loves me!! Tears just fell! He used to call me everyday just to tell me he loved me and now I can still listen to it everyday. He wanted to remind me he's here with me at a time I needed it most! I LOVE YOU DAD AND MISS YOU SO MUCH! THANKS FOR YOUR MESSAGE!

Are we allowed a bad day?

Today I'm having a bad day - I just can't seem to stop crying. It may have to do with the fact that I've been up since 3:00 a.m. In fact, I haven't been sleeping good at all lately - I can't get my mind to shut off - I worry that there's something else wrong with Aiden, I worry about what needs to be done and how I'm going to get it done, I worry that my kids are almost done with school and how I'm going to manage being a good mom to all three?

Today it hit me hard - my son is deaf and I don't want him to be!!!! Of course what mom does!!!??!! I don't want to do this! I feel so overwhelmed with it all - with all the research, with all the appointments, with all the therapy, with feeling like I have to be talking to him for his therapy every minute he's awake, with wanting to know about it all now, with wanting to do something to help others ... all while still trying to be a good mom to my other kids, a good wife to my husband, and keeping our house running! I feel that guilty mom feeling if I even think about trying to fit in time for me - but I know I need to!

Today I wonder if I can do this, but I know I don't have a choice, I have to, but today, I just don't want to. I can't even type this without crying and I need to stop because my mascaras running ... and I have to be up at the school helping with my daughter's play day and my student's play day ... but before any of this I need to feed Aiden and get his hearing aids in - he needs me and I'm so scared!! It's just a bad day today! I gotta remind myself - step by step ... DAY BY DAY - I CAN do this! RIGHT?