Thursday, July 31, 2008

Just Another Reminder

Tomorrow we leave for Daytona, Florida for a week. I can't tell you how excited I have been all day, yet tonight I feel some kinda sadness inside of me ... sorta like that feeling where all you want to do is have a good cry, get it out, and feel great again. I don't know if it's Aiden, my dad (I've really been having a hard time with his loss lately) or about this precious baby I rec'd an email about tonight.

When I say Aiden, it's not in a "woe is me" kind of way. He does not make me sad. His hearing loss no longer makes me sad. I hate that he has to go through so much, but I wouldn't change anything about him. He is wonderful, happy, loving, just absolutely amazing! And he makes me feel all of these as well! In fact the other day I was thinking about how I felt in the beginning of this journey. How I cried, how I thought my world was crumbling down around me. Oh how I prayed and prayed and prayed for a miracle. I prayed that God would give Aiden the miracle to hear. The other day I realized God has already given me my miracle ... my binky boy, my Aiden. And the wonderful technology that is out there today will LET AIDEN HEAR! What more could I ask for? What do I have to be sad about? It's all going to be just fine. Aiden's going to be just fine. I just know it.

Then I saw this email tonight on this precious little boy, Eliot. I cried. I cried for his parents and I cried for his short life. As I cried I couldn't even look at my baby because I knew I would totally lose it! All I could think was HOW LUCKY AM I?!?! Aiden has a loss, his hearing, but not even close as what other children's loss may be, not even close what other parents have to go through. This is a journey, and I'm not saying it's an easy one, but it's a GREAT one, because in the long run, AIDEN WILL HEAR, and if, for some forbidden reason Aiden can't hear, AIDEN WILL SIGN, and AIDEN WILL BE OKAY! I think, as I type this, this is why I feel a loss in my heart tonight. It's for all the brave parents out there who have to endure so much more than I could ever even imagine. I will never forget Eliot. Even though I don't know his parents, I have to thank them for sharing their beautiful story about their beautiful boy. Thank you for providing me even more courage to continue on Our Journey to let Aiden hear.

Tuesday, July 29, 2008

60db Baby!

Oops ... I don't know what happened, but I totally deleted the first post with this name by accident! AHHHH! It was the one time I had peace & quiet in the house with everyone asleep and time to catch up on Aiden's journey. Now we'll see if I can get it out again before my crew is up & going!

So much has happened over the last couple of weeks ... the biggest one being MY BABY IS HEARING US! HE IS SHOWING SOME GOOD RESPONSES OVER AND OVER! Just typing that brings tears to my eyes. I mean just three months ago I was being told that he was profoundly deaf (no response at 110db) and that hearing aids probably would not do anything for him. BUT THEY ARE!

We did behavior testing last week and with spoken language he tested at 60db with his aids!! (this is in the moderate-severe loss range and does not include the sounds of speech, so he is still on the path to cochlear implants). Aiden's daddy, our wonderful audiologist, and I all saw the binky business response and one time he even turned toward the speaker!!! Hello tears ...

I asked our audiologist HOW he could go from testing at a 75db just a month ago and now be testing at 60db. It didn't make sense to me. She said that, 1. he's becoming a better test taker, and 2. his aids are working for him so he's becoming more aware of sound and therefore showing more responses to them. I still was a little iffy ... I'm a very black/white person, show me HOW you can prove he's hearing at this level by just watching him; but as his mommy, I saw it too, my baby responded and I knew it! Aiden has been showing us many responses this past week and here's a few examples.

On Sunday, Aiden's dad called me as I was on my way to a baby shower. Him and Aiden were practicing different learn to listen sounds, when Aiden once again, repeated the ahhh sound to him! He was so excited he called me to let me listen ... sure enough, Mike would "ahhhhh" and Aiden would "ahhhh"! My heart melted! What a video moment - next time!

Yesterday morning I got off to the side of him and started saying the ling sounds (oo, ee, ah, ss, sh, mm) and Aiden would get real still and sorta dart his eyes around like "where is that coming from", then continue on. Then I'd do another sound, he'd get still again, and after another "ah" he actually turned, looked at me, and gave me a huge smile! I wonder if he just sensed me, smelled my scent, or maybe my baby just heard his mommy's voice and turned to see her! More tears ...

Go here for a good explanation of the Ling sounds and where these sounds fall on the speech banana. You can see on this chart that the "ah" sound falls closest to 60db and this is why he probably responds most to this. What surprises me though is that he has responded a lot today to my louder "shh" sounds (static sounding). Every time I said that sound today he would just stop and get this "WTF" look on his face!

We play pat-a-cake a lot and Aiden LOVES this game! In our recent therapy session with Miss Helen, she taught us to create "powerful moments". These are moments where a baby will begin to realize that something fun is going to come next. So during pat-a-cake the past few days, I've done a lot of pausing between lines. During this silence, Aiden gets so excited and belts out some pretty exciting screams "hurry up mom ... throw it in the pan!" I wonder if he can hear the inflections (is that the right word?) in my voice and knows there is more of it to come!

Oh yeah, and we had new ear molds made the other day (again). This time we got blue/white swirls (which I didn't know we could do) for our upcoming vacation to the beach! He barely even flinched this time. He's becoming a little pro at sitting nicely while the put all that cold goop in his ear ...

Aiden is going to be okay. Not only okay ... but GREAT! He is such a happy child who makes me smile all day long! We are so blessed to have him! This journey is absolutely amazing! Aiden is absolutely amazing and I would not change one thing about him!

Who Needs the Gym ...

when you have a four month old who won't nap and whose bedroom is upstairs?! Aiden is not a good napper. In fact, he doesn't fall asleep unless his binky is in his mouth and he is on his belly. Sounds simple right? It's not. After laying him down on his belly, he constantly spits out his binky to let out a "napping stinks" wail, and to add to it all, he has recently started rolling over to his back!

Now, I am very excited he started rolling over, but my butt and legs are beginning to hurt! Once I put him down for a nap, I am constantly running back up the stairs to either insert binky, flip baby, or both. I've tried the whole "stand there at his crib and wait until he falls asleep while rubbing his back" thing. I refuse to do this - this is the only way Ryan would fall asleep - until he was 2! Anyway, it's not working ... Aiden just rolls over, flashes a huge grin at me, laughs, and I end up picking him up because he's just too cute and then I have another afternoon of getting nothing done ... oh well, we do get a lot of therapy into our day this way! *smile & big sigh*
I've had many people comment to me "I bet he sleeps so well for you since he can't hear anything to wake him up." N-O-P-E! In fact, in the last week, he's probably slept 30 minutes throughout the WHOLE day ... this is not normal for a four month old! He just loves to play the "let's see how many times my mommy will run up the stairs and back down again" game. He knows he'll be back downstairs with all the action before long. Oh well, at least I'm getting some kind of exercise!

Sunday, July 27, 2008

Reminding Myself ...

that everything has to be day by day and step by step. It's been a rough week ... not so much with Aiden, but more so with the loss of my father. I am having a harder time with his loss lately than with Aiden's hearing loss.

When I first learned of Aiden's hearing loss, I didn't think I'd ever heal from it. It knocked me down and I didn't think I'd be able to pick myself back up. I felt lost, I felt scared, REAL scared. I cried and cried. I didn't think I'd make it through. Then I read and I researched and I talked to people and I realized everything was going to be okay ... that my baby was going to be just fine and we would adjust to whatever we needed to; we would learn whatever we needed to learn; we would do whatever we needed to do to make the best life for him.

And we are doing all of this and more, but I miss my dad, I miss him being a part of such a HUGE period in my life. He lived for his grandkids - he loved his babies. I often imagine what he'd been like with Aiden. He would have mourned with us, but would of had that take take charge attitude of "this is who Aiden is and we will love him for who he is and do what it takes to get through this." My dad would already have every DVD on sign language, have signed up for courses, looked at anything to buy off of tv or in ads on hearing loss, anything to do with hearing loss, he'd be ready. When it came to his family, especially his grandkids, noone could stop him, they were his life.

I've never lost someone like this before ... especially someone I took care of. I think that's the hardest part

I thank God everyday for my baby boy and his brother & sister, I thank God everyday for my life, I thank God everyday for

Friday, July 18, 2008

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!

Wednesday, July 16, 2008

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!

Monday, July 14, 2008

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.

Tuesday, July 8, 2008

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.