HUGE THANK YOU TO AIDEN'S CI TEAM

How do you show SINCERITY

to a team of individuals

who have given you

something you will FOREVER

be grateful?

How do communicate appreciation to

amazing professionals

who provided your child with

something that will IMPACT his

life forever?

What can you possibly give someone,

whom you respect and admire

beyond words, for all their

hard work, DEDICATION, and care

to your child?

How can you possibly show all this to

a phenomenal team that has provided

your deaf child

THE CHANCE TO HEAR?

We gave them many, many thank you's,

a big ol' cake, huge hugs,

and bittersweet tears.

We also give them

OUR PROMISE:

to not take Cochlear Implant technology

for granted, knowing

it's not a "simple fix"

but a continuous WORK IN PROGRESS.

there will always be challenges.

to fully commit ourselves to face

these challenges head on,

to not give up and know, no matter how frustrating,

they CAN BE OVERCOME.

to know that you gave him the "tools"

to hear, and now it's up

to us to PROVIDE EXPERIENCES

and proper therapy to use this

hearing "hardware and software" to open up

a world of hearing and spoken language.

to "PLAY" with Aiden everyday

enriching his mind with

language and listening opportunities.

to appreciate and respect all the

sounds our world has to offer and to

TAKE THE TIME TO STOP AND LISTEN,

as each moment is an opportunity to learn.

to EMBRACE this journey for

the miracle it is,

and walk hand in hand with Aiden

and cherish every single SIMPLY AMAZING moment.

as without the technology of

Cochlear Implants,

without his amazing surgeon, Dr. Niparko,

audiologist, Miss Jill, and team of therapists,

this all wouldn't be possible.

Our GRATITUDE to our surgeon, our audiologist,

and the whole support team

at Johns Hopkins Listening Center

is beyond anything that words or a cake can say.

We THANK YOU from the

bottom of our hearts,

for providing our son with

the chance to hear.

WE WILL MISS YOU!

Six Weeks Post Activation on Right Ear - Update on Left Ear

I've been horrible at keeping up this blog and so much has been happening! I SO want to make a video, but I am SO busy what seems like ALL the time! I'm toting my older two kids to and from school everyday, which turns out to be over an hour trip two times a day, then there's AV therapy or Infants & Toddlers (Aiden's TOD and PT) or audiology or lately, back to see the surgeon. Then Aiden is such a busy, busy one year old that does not like to play by himself. I think with all the "play therapy" I've done taught him he only likes to play if mom or dad is sitting on the floor playing with him. UGH! Gotta break this habit and fast! So anyway ... here's a quick recap of what's been going on:

Aiden's left implant looks GREAT! After surgery, he had a bout with fluid build up and had to rewrap this ear. We finally got the left CI back on this past Monday (10 days after surgery) and our baby's bilateral again! Whew! He did great with reactivation and has barely tried to pull it off since! We're back to P1 (program 1) with this ear, but have two additional programs to move up to over the next two weeks. Then after these two weeks we'll go back to the sound booth to check both ears, and readjust, if needed, from there.

Aiden was also tested in the sound booth Monday. My baby is hearing at 15-20 db across all frequencies with his right CI!!! To me, this is unfreakinbelievable! 15 to 20 db!!! This is the same boy who just a year ago couldn't hear anything at all at 110db and now he's hearing at 15-20db! Are there truly any words to describe this?!?

Some very fun, amazing, just out of this world, I thought I'd never experience with him things he's doing include:

• Whenever I do the /ah/ sound - he signs airplane (well, with his pointer finger flying around) - without anything from me except the sound /ah/! No joke.



• He is turning more and more to his name! I called his name all day today and almost each time I said it, he turned, looked at me, and smiled!



• When he's in his booster seat in the kitchen and someone comes in the very squeaky front door (which he cannot see), he turns to look who's coming in!



• When he went to dump the cat water bowl today, as always I said, "Aiden, no-no", which he typically never hears and continues to dump the water all over, but today he stopped! STOPPED, looked at me, went to do it again, I repeated myself, signed no, said it again, and he crawled away! I tried it again later as he tried to rip apart an arrangement ... and he STOPPED again, looked at me and smiled, very slowly put his hand up towards it again, I repeated myself (without sign this time), and he crawled away! I almost wanted to put him in situations so I could say "no" to him just to watch him respond! I've never been so happy telling a child no before!



• He's starting to babble ... a little bit. This is my biggest concern, but like his audiologist said - he's only six weeks hearing with one CI. True. And we are finally getting some "ah's, da's, and ma's" and today I even heard a couple times of him just gibber-gabbing like a hearing baby does, but still not like he did with his aids. We'll get there though.



• Sometimes, when we say "bird" or "tweet-tweet" he will look out the window at the bird feeder and then sign bird (which he does backwards and with his full hand). And sometimes when I say "cat" he will look around for one of the cats.

I need to get some of these things on video, but again, it's been so nonstop with all three kids. I can't be more pleased with how far my little man has come this past six weeks. I hate all that he's endured, but we know the end result is worth it. He's a tough little thing with an amazing disposition. He looked at me tonight, with those big blue eyes, and as I looked back at him, he just smiled at me. Smiled a big ol' smile. And he melted his mommy's heart just one more time today.

Repositioning Surgery

Aiden's repositioning surgery went great yesterday. We were up at Hopkins by 5:30am and home by 12 pm. We played in the waiting room for about an hour before they finally called us back to preop.




Dr. Niparko came back, discussed how he planned to reposition the implant, and before I knew it, it was time to walk Aiden back to the OR. This was the hardest part. I knew this surgery was not near as invasive as the first, but there's something about having to hand your baby over. I knew I was handing him over into great hands though. I have nothing but admiration for Dr. Niparko and the miracles he provides. We feel very blessed to have him for Aiden's surgeon and feel so secure with him. Everytime I see him, I still can't believe that we're here and that he is Aiden's surgeon.


After two hours, he came out and said everything went great. It took a bit longer than expected, but said he worked extra slow as to hopefully get that lifelong fit and not just a five year fix. He didn't have to mess with the electrodes at all, which was one risk of the surgery, having to insert a whole new implant in case a cord was accidentally nicked.


When I went back to post op, Aiden was drinking a bottle, smiled at me, and within fifteen minutes was blowing his raspberries and flirting with the nurses. Definitely a lot better this time coming out of anesthetic than last. By 5pm last night he had torn the bandage off and was back to Aiden - all over into everything.


Now that the bandage is off we can see how Dr. Niparko did a wonderful job repositioning the implant. It barely protrudes and is set higher, more up and away from the ear. He told me we could put the coil back on by early next week and start him over on program one. Aiden's wearing the whole processor on his shoulder right now anyway, so it won't bother the incision at all. Once he heals a bit more, I'll post before and after pictures showing the difference.

Bad Day, but Counting My Blessings

So we started off our morning with lots of smiles, a good breakfast, and what I thought was going to be a pretty damn good day. Wrong. And not that it was a rough, woe-is-me Aiden was a hellion day, but more so a hard physical day for my baby ... and a teary one for mom.

After breakfast this morning, I took Aiden's tray off his chair to wash it and before I knew it, he was on the floor ... face first. WHACK. I picked him up and a big ol' goose egg started to take form on his head. I ALWAYS buckle him in ... ALWAYS! I guess not this time ... I can't imagine that he could've unbuckled himself, although he does a lot of things I'd never imagine. All I could do was hold him and cry with him. I felt SO, SO, SO BAD. How could I let this happen! Then I got SCARED. So I called Aiden's daddy, packed Aiden up in the car, picked up dad on the way, and headed to the hospital, just in case. He seemed fine, but I wasn't about to chance it! All the way there I beat myself up and Aiden's daddy reminded me "shit happens." I have such a wonderful husband!

On the way to the emergency room, I got a phone call. It was, out of all people, Aiden's surgeon, Dr. Niparko. The first thing he always does is ask about Aiden. So I told him exactly what had just happened. He asked me some questions about the situation, and told me what he figured the ER would do ... send us home and monitor him for 24 hours. Aiden was fine and we turned around to head back home.

So our conversation went on. Aiden's left coil has been consistently falling off since activation. In fact, right before activation, his audiologist noticed the left internal implant piece had fallen in his head. At that time, we talked about doing surgery to move it back up, but decided to do a trial run first. Well, after a week of constantly chasing Aiden around to replace the left coil I called our audiologist first thing Monday morning to order a coil with a longer cord. Which we did, and is working. But Aiden's surgeon thinks it's best to move it now, before the internal part moves even more and before it gets entrapped in scar tissue etc. I just got off the phone with him, for a second time today, and discussed how it's best to do this now, rather than later. And even though the longer coil may work for a bit, we're all looking for more of a lifetime fit and a fix that won't have to mess with the great electrode insertion in Aiden's cochlea. As much as I hate to see Aiden go through surgery again, we trust his surgeon and know we need to do this now.

SO ... this Friday, yes in two days, Aiden has to go back for surgery. It won't be near as invasive as the complete implant, but it's still surgery. I hate that he has to be put under anesthetic again, but I would hate to have a constant fight of keeping the coil on. We see how the implant has moved, but were hoping we could get around having to surgically move it. The good thing is, is that the surgery should only take about 30 minutes, with a small incision, and back wearing his CI and hearing with his left ear again within a week or two. If there's anytime for this to happen, the time is now.

Then to top the day off he had his 12 month well baby visit (we were behind with everything going on) so he had to go and get three shots today! But, he did weigh in at a good ol' 23 lbs. 10 oz., and measured 29 inches long! His ear infection is all cleared up and he's on track with everything ... well everything except listening and language.

"No, he's not babbling ... but he will."

"No, he's not saying mama or dada ... but he will and I'll tell the world about it the first time he does!"

"No, he's not turning to our voices ... but he's starting to!"

"All he says is 'mmmmm' in a moaning, truly annoying way, but he'll move on to new sounds soon ... I really, really hope."

"Although he's deaf, he has been given the miracle of CIs (his pediatrician was teary eyed at this point). And next time, I hope I can answer more of these type of questions with yes."

So, here we go with another mountain to climb in our journey. I thought I was going to lose it more than once today. We're given many challenges in life ... and honestly, I'd rather be given this challenge than many others. My child is healthy. What more could I ask for.

Surgery Day

We're home and everything went great! Aiden's sleeping right now so I thought I better update before he gets up, because who knows what tonight and tomorrow will be like. Here's how our day went.

The day started close to 4:30am. We had to be to Johns Hopkins by 5:30am for check-in, surgery at 7:30am. Luckily for us, we don't live too far away, and even had time to stop and get coffee on the way. I was a nervous wreck, Aiden was all smiles. He had no clue what was about to come.

We were called back to pre-op around 6:30 and then it was just person after person coming in and asking questions, nurses, two anesthesiologists, two different doctors (plus residents) who were going to assist Dr. Niparko. All I wanted was to see our surgeon, Dr. Niparko, to know we were all set. Something about him calms me ... it's the same something that nine months ago made me feel he needed to be the one to implant Aiden. And then he came and I got all teary eyed. He reassured me that everything was going to go just fine. He told us that surgery would be right around 3 hours and no matter what, they'd come out at 10:30 to give us an update.

They allowed one of us to go back with Aiden and I chose Aiden's daddy. I tried during his MRI but couldn't watch Aiden struggle as they put the mask on. Within minutes Aiden's daddy was back and Aiden was out. It was just a bit after 7:30am.


We went and ate a bagel and I got more coffee. Then we just went and sat in the waiting area. Aiden's daddy slept (he says he sleeps when he's nervous ... I say men can sleep through anything), and I tried to read, plan the next couple weeks dinners, etc. Before I knew it, it was 9:30. This is when my nervous belly came back and time went sluggishly by. I got even more nervous as I watched 10:30 pass us by, but just before 11am, the surgeon came out and we jumped up to hear.


Dr. Niparko said the whole surgery went absolutely wonderful. He said that Aiden did have quite a bit of inflammation, but no infection. He got a full insertion on both ears and said that both ears have a near identical insertion ... which means that both ears will hear pretty much the same and that mapping will be that much easier. I will post later about the whole insertion process and show pictures of what the implant looks like, right now I'm just too tired.


Then we got to go see our baby. He was just coming to from anesthetic and of course very fussy. He was sucking down pedialyte like crazy. I got him in my arms and fed him a bottle as I rocked and calmed him. It felt so great to hold my baby, knowing the hardest part (emotionally and physically anyway) was done. He made it through. My baby is ready to hear. Next stop ... healing then activation.


We left the hospital by 2pm and were home soon after. I can't believe how short the day actually was, especially with bilateral implants! But even more so, I can't believe we're one step closer to our baby hearing! A lot of people ask, "can he hear now?" and no he can't. His implants are inserted, but now they need to be "turned on" and then lots and lots and lots of therapy. Again, another whole post for later. Today was a very important day. We are so very thankful for Dr. Niparko and his team at Johns Hopkins. We couldn't have been in any better hands! They all did such a wonderful job with our baby and we can't thank them enough.

I'm sure I'm missing things, but I'm worn out. Aiden's been sleeping a lot, but should be back to himself tomorrow. We will try to leave the bandage on until Friday, but I have a feeling it will be off before the end of tomorrow. All I know is that now that it's all said and done, I feel this huge sense of relief ... I can breathe again. Even more important, I know that today Aiden was given the gift of the ability to hear by an amazing surgeon. Now it's up to us to make it happen. Hearing world ... "hear" he comes!

The Day We've Been Waiting For ... Is It Really Here?

It is finally here. Tomorrow Aiden's ears will be blessed with the miracle of cochlear implants. Tomorrow Aiden's surgeon will provide him with the opportunity to hear. Tomorrow is another step, a HUGE footprint, in our long journey to help Aiden hear and speak.

I will never forget the day almost ten months ago when they told me my son was deaf. All I could do was cry. and cry. and cry. Ten months ago I heard this term "cochlear implants" for the very first time. "WOW!", I thought. They'll simply surgically implant this "thing" in my baby's head and he'll hear! We went home and googled cochlear implants and saw the head gear Aiden will have to wear the rest of his life, a small price to pay for the gift of hearing, yet, we still cried. and cried. and cried. I gave myself time to grieve. I had to get it out. Then I jumped into learning all I could, got Aiden into therapies, got him his hearing aids, created a household that is rich in language acquisition, created an auditory-verbal environment that has become part of our everyday life ... and we've been going full force ever since.

My crying spells came fewer and fewer in between. Aiden blossomed into this child that you would never know was deaf, unless you screamed at the top of your lungs behind him and saw he had no reaction - none what-so-ever. Aiden has provided me this unbelievable strength, it is him and his WANT to hear, his DESIRE to explore, his DETERMINATION to do what he wants to do, that has kept me going. This kid is amazing. This kid is going to do amazing things.

So tomorrow's our day ... his day. I have emotions running wild inside of me. This is a day of no return. It scares me to death thinking of handing my baby over for a four to five hour surgery. I totally trust our surgeon ... which I still can't believe is the one I found 9 months ago, looked at my husband and said, "This is the man that needs to implant our baby." And he is. And he's one of the best. But even more so, I trust God. I thank Him everyday for Aiden and for making Aiden healthy in everyway. It was Him that put us here in Maryland and I have the utmost faith in Him.

We have also been so blessed this whole journey with love and support from family and friends and we thank ALL OF YOU! Some examples of the outpouring of love and support we get include:

• My mom, she has been overly supportive throughout. She answers that phone everyday, even though she's working, to listen to me tell a funny Aiden story, or to let me vent, or to cheer me on through my tears. She has cried with me. She is one of my biggest supporters, sending learning toys, videos, books to Aiden to help in his therapy. She is my hero.
• My mother-in-law, a very devout Catholic, is always letting us know all the prayers she has sent out for us and Aiden. She called the other day to let us know that tomorrow, Aiden's surgery day, is Our Lady of the Lords (Blessed Virgin Feast Day), which is the day of miracles. She is an amazing woman and I'm lucky to have her in my life!
• Aiden's daddy's aunt, Sister Ann, is a retired nun. One of her teachers, Sister Julie Maria McDonald, is still alive, and has been praying for Aiden throughout his journey. We found out the other day, that Sister Julie Maria has spiritually adapted Aiden. We've never even met her, but Sister Ann has shared pictures with her. She took one of Aiden's pictures and sketched him in Jesus' arms. I can't wait to see it.
• ALL of our family & friends have been in the cheering stands all along! Always asking how things are, sending prayers and good thoughts, giving hugs and sending love. WE ARE SO LUCKY TO HAVE EACH AND EVERYONE OF YOU IN OUR LIFE!
• All of my blog buddies. I have created some wonderful friendships through my blog mommies. I've learned from all of you. We've never met, yet there's such a connection. Your children have provided me so much hope! I cry as I watch videos of your babies hearing for the first time, speaking in complete sentences (at 2!), singing, dancing to music, doing things I thought my deaf child never would. YOU ALL ARE AMAZING! I can only hope to help others as you have helped me and that one day, another mommy will cry as she watches Aiden speak, and sing, and dance, providing her hope that her deaf baby will do the same one day.

Tomorrow is going to be a GREAT day, tomorrow we take another big step. Day by day, step by step. I've learned that this journey is not a sprint ... it is definitely a marathon ... and we have quite a ways to still go ... but we've had a great start ... with an amazing group of people cheering us on!

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By the way ... on another note, the Nat. Geo. shoot went very well! Aiden was a true trooper, loving every bit of it! He even kept on his hearing aids for quite some time. The photographer came last night and spent a couple hours with us, then again today and spent the whole day here. He was great with Aiden and Aiden gave him a good show of his world. He signed light and eat, clapped his hands when I said "Yay" (with no visual cues), imitated me saying "mmmm" and "ahhhh", and of course, gave a ton of raspberries! They were very impressed with my little man, his nonverbal communication, and of course, his smile.

I don't know what I can say about the article yet, but I'll check on that tomorrow.

Also, just to let you know, Aiden's surgery is outpatient. We have to be there by 5:30am and they're supposed to start at 7:30am. The surgeon said it should be around 4 hours and that we should be home by dinner! I'll post as soon as I get a chance!

Going for the Bilaterals

Aiden had his last behavioral soundbooth January 12th. Well, obviously not his LAST, but his last one before his big day (which is just three short weeks away!). They tested each ear separately and the results were very similar to his last test -- he showed responses, with his hearing aids in, at 45db to 50 db across all frequencies. What is weird is he always seems to dip a little in the middle frequencies, his audiogram looks like the speech banana to a sort.

We took the past month or two and really looked at all the pros and cons of bimodal (one CI and one hearing aid) and bilateral (two CIs). We researched and read all we could on each. We know families whose child(ren) have been successful with bimodal and bilateral CIs. We questioned and questioned, but what we always came back to was that bilateral would be best for Aiden. We decided to wait and make the FINAL decision the day of this past soundbooth, but with no improvements, our decision had been made.

Here are just a few things we looked at when making our decision.

What we liked about bilateral CIs:

• Better localization and better understanding of speech in noise-- Kids learn so much from other kids and we believe that bilateral CIs will be a huge help in the classroom - for the noise and to help determine whom is speaking and from which direction.
• Better sound quality and more sound balance
• Less fatigue at the end of the day - I know at the end of any seminar I attend, I am worn out. Who would ever think listening would be such a hard task, but for a deaf/hoh child, even with cochlear implants, it can be very tiring!
• If one side breaks, there's the second one for back up.
• I also read many personal stories from parents or kids themselves saying that their child became more social with peers and participated more in class once they were bilaterally implanted. I believe this has to do with confidence. I can relate this to one of my fourth graders. I knew his hearing could fluctuate due to fluid/tubes. Whenever he was very quiet in class, stopped participating, and was very apprehensive if called upon, it alerted me to contact mom. Once the problem was corrected medically, he was a whole new student.

Some of the places we found helpful information on bilateral CIs are here, here, here, and here.

In this write-up, Is Bilateral Really Better?, this wonderful mom (and mentor to all us newbies out here), did an excellent job comparing unilateral vs. bilateral CIs. And, as she states in her article, bilateral CI's are not for everyone. There may be significant usable hearing in one ear, there may be insurance issues, or maybe medical issues that do not allow for two implants among other things. We are lucky that we have the choice between bimodal or bilateral, and bilateral is what we've determined is best for our baby.

What we liked about bimodal:

When we started seeing Aiden doing well with his hearing aids and learned his deafness was due to EVAS, we started thinking about just implanting one side. Here are factors we considered when making this decision.

• Use of residual hearing -- Through the great use of his aids and his learning to listen, Aiden has shown us that he does have some residual hearing, and therefore the sound of music and sound quality in general could be better for him. With CI's you hear electronically, with hearing aids you still hear acoustically (the difference was described to me by the analogy of a song played on an acoustic guitar vs. the same song played on an electric guitar). In a bimodal situation, it allows for all sounds of speech through the CI (hearing aids provide more lower frequency sounds than the higher ones), yet still allows for natural acoustic hearing through the hearing aid. One thing we had to consider though, was with his EVAS, his residual hearing can be lost progressively, or one day, completely gone.
• Future technological advances - This has always been a thought in the back of our minds, should we "save" an ear for future technologies? We are sure that one day there will be better technologies, but we decided we needed to stay in the now and the known. NOW is the time that Aiden is in his prime learning stages and what we know is that cochlear implants will provide him optimal learning capabilities.

When researching bimodal, this is one article I found interesting.

All in all, we decided that bilateral implants are a better choice for Aiden and our family. Therefore, on February 11th (with certification from our insurance, which we're still waiting on, please cross your fingers all goes through!), Aiden will get his cochlear implants. Our surgeon agreed to perform simultaneous implant surgery, which will save Aiden from having to go through a second surgery months from now. Recovery may be a little rougher (hard to sleep on either side), but again, we feel this is the best for Aiden and we can't be more excited (or nervous)!

Six Weeks Away and It's Starting to Hit Me

Now that Christmas is over, now that we've all gone through some sort of puking and/or respiratory episode, our days are finally beginning to slow down and I can't help but think about our next big event ... Aiden's surgery. I can't believe Aiden's implant time is so close and all of a sudden, out of nowhere, I have all of these emotions going crazy inside of me. I can't believe that in less then 2 months, my baby will begin his hearing journey.

What seemed like would never, ever get here, is right around the corner. We have worked so hard this past year in learning, teaching, practicing, researching, doing all we can to teach Aiden to learn to listen. Since finding out about Aiden's deafness, I have done so much to educate family and friends about Aiden's world. I have prepared them for what is to come, by sharing all I have learned, stories from other families with a deaf/hoh child(ren), what the surgery will entail, activation, having to teach Aiden to listen etc. etc. etc. But somewhere in between all this, I don't know if I've prepared myself; because now that it's almost here, I go from completely ecstatic to terrified all in one breath.

It seems so surreal. It feels like just yesterday they told me, "It's probably just fluid." It seems like just yesterday that everytime I looked at my baby, I'd cry, thinking how he couldn't hear his mommy's voice. I don't think too much about Aiden "being deaf" anymore. I talk to him all day like he can hear me. I work with him all day teaching him to listen. I try very hard not to let his deafness define him. We work very hard with his learning to listen and I commend my little guy for how far he's come. With his hearing aids, he turns to noises, he turns his head to 5 out of the 6 Ling Sounds (ahh, mmm, ooo, eee, shhh), he turns to his name (sometimes), he responds to some words (in combination with some sign) such as dada, eat, up, milk, light, bye-bye, peek-a-boo. He's getting it ... some of it ... but he doesn't have the whole package. And even after all these months, I still hate it for him.

I have been catching up on all of my blogs tonight, and as always am amazed at what our deaf/hoh children accomplish! We were very fortunate to find out about Aiden's loss as soon as we did and to get him into therapy right away. Because of this though, our path to cochlear implants has seemed like an eternity. Through it all, it has been great therapy for me to watch Drew sing, and Toes have conversations with her friends, and Christian tell his mommy he loves her! Please click on these links and watch the videos and read the stories. Each of these parents were at a point I am today. Each of them wondered if their baby would hear and speak. These stories have been so inspirational for me, since at one time I totally wondered if my child would ever HEAR, would ever TALK. Stories like these are the reason I do not think about Aiden's deafness day in and day out. Stories like these have provided me the wisdom, faith, and hope that one day I will hear Aiden sing, Aiden tell me he loves me, and Aiden have an all out conversation with whomever. It won't be easy, but it will happen.

It has also been a blessing to walk hand in hand with Lucas' mom, Ben's mom, and Danny's mom. To think two of these precious babies have had their surgery and soon it will be OUR turn. I am so excited and so ecstatic and so anxious and SO SCARED! I have been having a lot of dreams. In one, I couldn't tell if the implant was working, because Aiden was too young to tell me whether or not he could truly hear. In the other, I was getting the implants, and I was terrified, yet in the end, I walked out of the hospital just fine.

We still have about 1 month, 2 weeks, and 1 day until Aiden's surgery ... but who's counting! What keeps me going is the thought of my baby actually hearing us sing Happy Birthday to him when he turns one on Saint Patty's Day. How amazing is that!?!

Seriously?

Aiden has been sick with a cold the past week and has had an outbreak of eczema since we've been in Maryland. In fact, I took him to the doctor's one week ago today, because as a mother of a baby about to get cochlear implants, I am scared to death of ear infections, or truly any infection that could delay our surgery date. Plus, I needed them to give me something for the eczema. The doctor told me Aiden just had a cold and it needed to run its course and recommended an over the counter lotion.

Let me preface this post with the fact too, that the reason I chose this clinic was because of its association with the hospital we bring Aiden to for his ears. It is a clinic though with a lot of family doctors, pediatricians etc., and when you call in, you can ask for your doctor, or take who is available. I'm new here, know no one, and I'm still trying to find the pediatrician I like best for my kids. This particular instance was with doctor number 2, a family doctor.

At this appointment last week, I asked if there was any fluid in Aiden's ears, and the doctor told me "not really".

"Not really? Does that mean you see a little or none at all?" I asked and proceeded to tell him about Aiden's situation.

"Nope, not really any fluid. Let the cold run its course and use the lotion for his eczema. You can get it over the counter."

Decision made. Period. Moving on to try doctor number 3. I was already planning how next time I would specify I wanted just a pediatrician, not a family doctor.

Well, today we had that chance ... doctor number 3. I had to take Aiden back this afternoon as he started wheezing and having very raspy breathing. On top of this, his eczema has spread, and from this morning to this afternoon made it to his face. The over the counter "lotion" wasn't working by itself. He needed more.

So we headed back in. As the nurse weighed him she commented how bad his breathing sounded and checked his oxygen levels. They weren't where they needed to be. Doctor #3 came in, looked at his eczema, and said we definitely needed a prescription to get it under control. Then she listened to Aiden's chest ... for like 5 minutes ... and tells me after all is said and done, that "Aiden is just a heavy breather. Bring him back in if it gets worse."

"SERIOUSLY?!?!"

I think I was in such shock that she truly said that, I didn't know what else to say. I took a deep breath, wondered why I was even back to this place for a third try, and said very calmly, "although my baby IS a nasal breather, THIS breathing NOW, is wheezing. He needs a breathing treatment. Did you see his oxygen level?"

At which time, (get this), she checked his, thought the machine wasn't working, so checked her own, saw that hers was fine, and then ordered him a treatment. Then after the treatment, she listened to his chest and said, "Oh this is weird, now I hear him wheezing. We need to get him some medicine and continuous breathing treatments!"

No *&#@!

If it wasn't after 5pm and I would've known another office to bring Aiden to, I would have picked up my things and walked out. But he needed medicine now, and we got it. We came home with a nebulizer machine, Albuterol to use in the nebulizer, steroid creme for his eczema (to put under the "lotion"), and Prednisolone which will help both the eczema and his breathing (which by the way, can both be onset from a virus and go hand in hand ... hmmm, imagine that).

Oh, and on top of this all, Aiden has "some fluid" in his ears (at least she didn't say "not really" when I asked), but nothing red or pussy, no infection. I told her, "some fluid" is not allowed in a cochlear implant candidate, especially one so close to surgery. She asked me when the surgery was and then commented, "Oh, how nice, ear surgery right in the middle of winter!" AHHHHH!

Hmmmm .... three doctors ... three strikes .... and this clinic is outta here! Oh, I need a good pediatrician for my baby!

A mom from the parent-infant program we attend, gave me the name of this pediatrician out of Georgetown University Hospital, who provides pediatric services for families with deafness. How wonderful is that! A pediatrician who truly understands! Problem is though, it's over an hour away on a good day of traffic! Of course I'd love for Aiden to be one of her patients, but reality is, when your child is running fever and feels like crap, the last thing a mom wants to do is put them in the car and drive for over an hour!

I'm calling Aiden's surgeon tomorrow to give him an update on all of this. He is also in the process of getting us an appointment with a top ENT there at Hopkins, because of Aiden's EVAS/LVAS and his branchial cleft sinus on his neck. Maybe I can get in and see this ENT sooner than later. I'm interested to see what the surgeon says about all of this. Will they need to put in tubes to get rid of this fluid if it doesn't go away? Even though his ears aren't infected? My last ENT put him on antibiotics immediately (when our pedi. refused to) when Aiden had just "some fluid" back in Texas. I pray none of this affects his surgery in any way. We only have a little over six weeks to get our boy healthy for his big day!

and HERE WE GO ...

Aiden's surgery date is set! I was completely caught off guard when his audiologist emailed asking if we were still interested in a January implant date.

Ummmm ... Hello? ... YES!

I emailed back expressing my confusion about actually scheduling surgery prior to Aiden's next behavioral soundbooth. She replied that the schedule is filling up fast and that they want to get Aiden on the books ASAP for at least one implant (which we all agreed to at his last appt). Then, soon after his next soundbooth test, Aiden's daddy and I need to decide whether to implant both of Aiden's ears or just one. If we choose to have him bilaterally implanted, Aiden's surgeon also agreed to simultaneous implants, which means just one surgery to implant both sides! VERY, very exciting, if this is the route we choose (and A HUGE THANK YOU to this mom and her precious boy for paving the way)!

We're still researching bilateral CI's (both ears implanted) vs. bimodal (one CI and one hearing aid or electric hearing from the CI and acoustic hearing from the HA). We're trying to decide what would be best for Aiden. Do we really know at this point? I've seen great success stories with both. This is a very hard decision for us now after just recently finding out that Aiden has enlarged vestibular aqueduct syndrome (EVAS/LVAS), in which his hearing loss can flucuate tremendously over time, or, just one day all hearing be completely gone. Before this, we knew we wanted bilaterals, but at that time, Aiden wasn't hearing aided at 45db either! I'd love to hear from any of you and whether you chose bilaterals or bimodal and why!

So February 11th ... with insurance approval (and lots of prayers), is my baby's big day. He's on his way to hearing, and all before his first birthday! When they told me, I cried as I wrote it down. It screamed out to me ... MY SON IS DEAF. Why him? Why does he have to go through all this? He's way too young for surgery! I absolutely hate this for him, but truly know it's the right thing to do. I felt so many emotions rush through me all within 5 minutes ... panic, sadness, joy, selfishness, excitement, anger, worry ... and I just let myself cry.

As I cried, I took a look over at Aiden in his highchair, he smiled his big ol' toothless grin at me, shoved about a half dozen "puffs" into his mouth, and blurted out a big ol' raspberry and puffs sprayed everywhere! I laughed out loud and gave him a huge smooch!

Yeah ... he's going to be okay ... He's going to do great!

So we Hear, He is "The Man"

When I was a child my dad would chase us kids around, as we laughed hysterically, doing all we could for him not to catch us, for when he did, he'd tickle us until we answered his question, "Who's the Man? Who's the Man?" and inevetibly, we'd scream out in pure laughter, "YOU ARE DAD! YOU ARE!"

He continued this with his grandkids, who absolutely L-O-V-E-D this game. In fact, my oldest son Ryan, wrote on the card for the flowers at his grandpa's funeral ... "Dear Grandpa, You will always be "The Man". I Love you." Your Partner, Ryan.

Move over dad ... because after the last couple of weeks in Maryland ... I keep hearing about "The Man" who just so happens to be the doctor & surgeon on Aiden's new CI team.

Every appointment we go to, people comment about how we are in such great hands at Johns Hopkins. How great of a team we will have and how we've come to the right place. They comment how the whole cochlear implant team is just phenomenal. Then they ask, "Who is your surgeon?" When we tell whom ever it may be asking, every response is very similar ... "Well not only are you in good hands, but you have "THE MAN!"

We met with "THE MAN" this past Monday. I'm lucky to say he is part of our team. He told me what every mom of a deaf/hoh baby constantly wonders, constantly questions, day in and day out,

"What caused my baby's hearing loss? Why is MY baby deaf?"

He told me, after looking at my baby's MRI, why our binky boy has a hearing loss. He told me the answer I've been searching for, all within 10 minutes of meeting him. He is "The Man". And although now I have more questions and even more to look into, at least I am now aware of why my baby boy cannot hear.

Aiden has Enlarged Vestibular Aqueduct Syndrome OR EVAS/LVAS. Go here to read more about it.

We're still looking into what all this means and I will blog more about it later. We still have a lot of questions. What we do know though is that our goals for Aiden are still the same. He will still greatly benefit from a cochlear implant and we will continue to work our butts off to make sure he is successful, before and after implantation.

And although we are SO excited to have "The Man" as Aiden's surgeon, we know and will never forget, who is truely "THE MAN" ... my daddy a.k.a. Grandpa Bob.