Let the Games Begin

Aiden has found his hearing aids! He is reaching up to his ear, grabbing them out, and using them as teethers. Expensive teethers. Mixed emotions about this all though. I am ...

Excited - Because he either realizes something is on his ears and wants to check them out, OR he's discovered his ears and realizes there is something he can grab off of them and of course where does it go? Right to the mouth!

Nervous - These aren't cheap devices and I don't think they're water proof! Aiden's been drooling like crazy ... just waiting for a tooth to pop up ... but these aren't my ideal teethers! Plus, I know from reading other stories, it'll become a game of "In the Ears, Out of the Ears", and I can only hope I will win ... I'm predicting not.

While watching all of this, Aiden's daddy was practicing the airplane noise with him (aaaaaahhh-aaaaah-aaahhh-aaaaah) and flying around the toy airplane, when Aiden looked right at him and out came "aaaaaahhh", out of nowhere! We both just laughed! Hey ... you never know what he heard, and we choose to believe he heard his daddy talking to him and he wanted to particiapte in the conversation too!

One more step ... one more day!

Another Lesson at the ENT

Well, we had our appt. yesterday with Aiden's ENT. He didn't seem TOO concerned about the branchial cleft sinus, but said Aiden would need surgery to get it removed so it does not become infected. He said it's a fairly simple surgery, but with Aiden's age we'd probably spend one to two days at the hospital, depending on how deep the sinus is into his neck. The interesting part is that this MAY have to do with Aiden's hearing loss.

There is a syndrome, branchiootorenal syndrome (BOR), that has to do with the branchio cleft sinus (branchio), hearing loss (oto), and problems with the kidneys (renal). Dr. B says this is rare (I read 1 in 40,000), but with Aiden having two of the three, we need to check the kidneys too. He said what he has seen is the child being born with only one kidney or a malformed kidney, but that there USUALLY is no further problems associated with it (my dad was born with only one kidney, but never had any problems with it nor his ears). I started reading things on the Internet, but stopped after reading about an 8 year old little girl on a kidney transplant list who has BOR ... bless her heart! I can't get myself all worked up over something that may not be. I just can't. Not now.

So ... our next step with this is an MRI. Our ENT office is in the process of scheduling us a fun filled day (yeah right!) of appointments at Children's Medical Center in Dallas. Dr. B wants to do the MRI on Aiden's neck and at the same time, go ahead and do the MRI on his ears to see how his cochlea's look and verify candidacy for CIs. Even though I don't want to see my baby sedated, I'm glad we're getting two things done with one sedation, and I've been so anxious to verify candidacy! Plus, we'll get his ultrasound on his kidneys done, and bloodwork for Connexis 26 (which will tell us if his loss is non-syndromic).

Another day in the life of Aiden. I hate all that he has still to endure ... I just hate it. Yet I know he will be okay. I just have this peace about me ... praying definitely helps along with a positive "everything's going to be ok" attitude. It also helps having Ryan upstairs belting out Rolling Stones, Give Me Shelter, on Rockband! (huge smile!) If you ever need a chuckle, call me and I'll let you listen!

Back Home and Getting Ready ...

... for all of Aiden's upcoming appointments! It was a nice two weeks off, but we're home and back into the swing of things. Aiden has really done a lot the past couple of weeks! I cannot believe how fast he is growing and changing! I have to say too, his hearing aids have become such a daily routine ... almost like changing his diaper, they go in when he gets up and come out when he lays down. The buzzing can drive me crazy, but I've become good friends with Otoferm!

This is what we've been working on the past few weeks:

The Listening Box - this is a box that we put all kinds of objects in for Aiden's learning to listen sounds, like different animals, an airplane, a car, etc. Of course, before I got pregnant with Aiden I sent many huge bags of baby toys to Goodwill, including the Little People garage and two barns with all the animals! The sounds we're working on right now (using a very "mama drama" voice as our AVT Miss Becky calls it):

• airplane - aaaaaahhhhhh (long sound with different pitches)
• sheep - baa-baa-baa (short sound - same pitch)
• cow - mooooooo (long sound at same pitch)
• cat - meeeeeoooow (long sound with different pitches)
• duck - quack-quack (short sound with same pitch)
• car - brrrrrrm with a BEEP BEEP at the end
• train - chug-a-chug CHOOO CHOOO

This is how our at home therapy typically works:

"Aiden, listen." (as I point to my ear)

"Airplane." (say object but don't show it ... we call this "Tell then show"

"aaaaaahhhhhh, aaaahhhhh, aaaaahhhhh" (make sound of object)

"Airplane." (show Aiden the object)

"aaaaahhhhh, aaaaahhhh, aaaahhhh" (create sound with object moving around)

Then I give the object to Aiden to check out, which, of course, goes right in his mouth . Babies learn through their senses and since Aiden can't hear, he is learning even more through his sight, taste, and hands. After he's done exploring the object, I say, "Bye-bye airplane", then put it away then ...

"Here comes more." (Then I start all over with "listen Aiden" and a new object. I'm not sure why, but I was told to use the word "more" a lot. This is a question I have for this week's session.)

Peek-a-Boo and Pat-a-Cake - We play these all the time and Aiden just loves them! Especially pat-a-cake. He gets the biggest grin on his face and laughs out loud when we "throw it in the pan!"

Vocal Play - This is where Aiden and I have our mommy-baby talks. They are so much fun! It's amazing to watch how he belts something out then will stop and wait for me. He watches my face so intensely then gets so excited to babble back! We hope that he hears himself make these sounds (even a little) and then he sees my reaction to them by me repeating the sound as well as me showing excitement. If he were to realize that nothing happens when he makes the sounds, then he'll stop making them. We all do a lot of vocal play with him!

Aiden's first booth test showed he may hear low frequency sounds in the 75-80 db range. This range does not include any speech sounds, but we're hoping his brain is detecting a short sound vs. a long sound. We're hoping that when a sound is made, he's realizing there is something there and is getting a good jump start to listening. This is also preparing us all for the therapy once Aiden receives his implants, which we're still praying he is a candidate for.

Aiden's recent milestones include:

• gaaaaaa's and kaaaaa's sounds
• da-da-da-da sound when he starts winding up and getting mad (of course Aiden's daddy takes this as his first word! : )
• short a and long a sounds
• rolling from belly to side
• grasping objects with both hands and bringing right to his mouth
• reaching for objects with both hands (we just saw this for the first time this weekend!)
• starting to hold his bottle
• Belly laughing! I love this!
• Frightened cry ... he's starting to cry when someone he doesn't know talks to him or when he seems to get frightened by a sudden movement.

The appointments we have this week are:

ENT - I can't wait for this one. We're mainly going in to see about Aiden's brachial cleft sinus. BUT, being the anxious mom I am, I am also going to ask lots of questions about the cochlear implant candidacy process. I'm hoping to get the MRI done the same time they do his surgery to close up this hole, why sedate him more than needed!

ECI - I haven't really posted about my ECI (Early Childhood Intervention) crew, I will soon. They are all wonderful! We have a Teacher of the Deaf (TOD) and an Occupational Therapist (OT) who will visit this week.

Four Month Well-Baby Visit - I can't believe my baby is four months already!

Auditory-Verbal Therapy (AVT) - We see Miss Becky this week and Miss Helen next (we rotate between the two each week).

(Our wonderful team of professionals and the role they play in our life is a post all on it's own ... I'll post this soon).

Then next week we go back to the audiologist for another booth test and to adjust his hearing aids. Very, very busy, but all well worth it! I have to say, working with Aiden has become quite fun! It is amazing to watch my baby grow ... in all ways! Every time he flashes that big grin at me just melts my heart! I know he's going to be okay; I have faith it is all going to work out; I have hope my baby will hear and speak one day and right now we're working hard to get there.

Nothing but Peaceful Summer Days...

...who could ask for anything more than that? We've been on vacation up in Wisconsin the past week and a half. We come up here every summer to visit my mom, my grandparents, and family and to go camping at Boulder Lake (my mom has a great trailer, so we don't actually rough it). It's a smaller lake in the middle of a national forest and just BEAUTIFUL! The smell of the piney woods and sounds of nature bring a sense of peace about me, a sense I truly needed this year. I look at it as God's way of reminding me that everything will be okay, to just take deep breaths of the fresh air and enjoy His beautiful surroundings. I absolutely love the serenity of it all and this year has been the best trip ... even with a 3 month old in tow.

Camping let my mind rest of Aiden's deafness. It was so nice to just enjoy my children in a place we all love and not worry about running to therapy or doctor appointments (of course I still worked with Aiden everyday ... a little note to not stress my AVT's) or worry about what I can do with my other two to keep them busy all around Aiden's schedule. It brought back a part of me I haven't felt in a long time.

Aiden loved it just as much. The crisp fresh air really put him out! He slept great! Everyday we took a walk through the grounds down to the lake. As I walked, I listened. And naturally, without even thinking about it,

"Aiden, listen. Bird."
"Aiden, listen. Boat."
"Aiden, listen. Water."
"Aiden, listen. Fire."

There are SO many great sounds in nature! Prior to Aiden, my favorite part of camping was to wake up early, get my coffee, and sit on the deck with my mom and just chat with sounds of nature all around. I never thought much about it, just enjoyed the beauty of it. Who ever knew these sounds would become so important to me and my precious binky boy!

Throughout the week I also thought ahead. I know I'm supposed to live in the NOW, but I couldn't help but think of camping next summer. Aiden will be 16 months and (hopefully) have his implants. He'll be running around and I won't be relaxing near as much. Just thinking of what a learning experience it will be for my baby ... just thinking of all the sounds in nature that God has given us ... just thinking of the smiles and wide eyes on my baby's face as he hears these sounds for the very first time ... just thinking of all this brings tears to my eyes and a smile to my face. I have faith my baby will hear ... my baby will hear the lovely sounds of nature ... one day ... one day soon.

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!