whisper

I was so amazed to hear Kevin whispering today. My husband whispered something to him and he whispered his answer back!!! I don't exactly know why I am so surprised that Kevin can whisper, but it just fascinates me that he can detect and mimic the volume level in someone's voice. He seems to be adding words daily to his expressive language and his clarity is getting better and better.

On another note, we are experiencing some frustrating issues with his processors. It seems that the processors are faulty and they have all (4 of them) decided to break in the same week. The processor is locking when you turn it on so that you can't adjust the volume, program, or even turn it off without taking the battery out. Luckily, the processor is locked on the correct program. The bigger issue is, however. when I called Cochlear for replacement processors, they told me they don't have any. The processors are backordered. How absurd is that????? A cochlear implant company doesn't have any processors? Well, it turns out it is true. The processors are refurbished and too many people haven't turned the broken ones back in. Luckily, our implant center is giving us loaner processors to get us through until we can get our new ones. There was about 2 hours that I didn't know his still worked and I thought we wouldn't have them for a few weeks. Needless to say, I was crushed that his first hearing Christmas would be in silence, but all is well again, and he will hear Santa's reindeer land on our roof! :) Just one more gray hair for me from this experience!

Successful mapping

Kevin had his 9 month post-op mapping on Monday and it couldn't have gone better! I was soooo proud of him! He sat through the entire 2.5 hours, which is a feat alone! His map didn't change much, but they increased the levels in the mid range a bit. When he tested in the booth, he reliably performed the behavior-based testing which is where Kevin would through an object in a bucket every time he heard a sound. He tested at 15-20 db across the board!!! I can't believe it!!! The sounds were so soft a and he would look up and toss the block in the bucket. They said he was very young to be performing this task, but he did it so well. We have been working with him a lot during therapy to get him to do this. I guess it worked!!!

It is hard to believe that last year at this time we were having his ASSR testing done. With the ABR test, I would cry harder and harder every time they turned up the volume to test his hearing. On Monday, I had tears streaming down my eyes every time they lowered the volume and Kevin responded to the sound. It is amazing how much can change in just one year!!!

The audi was very impressed with Kevin's vocabulary both receptively and expressively. He is talking up a storm these days. He even said 'hotdog' today! I am so proud of Kevin and his progress. What a great Christmas present for us this year!!!

Another first for Kevin (and me)

Tonight I encountered another first with Kevin and his hearing. His bedtime routine usually consists of reading stories, brushing teeth, saying prayers while rocking him, then I remove his ears, rock for another minute and lay him down. He loves this routine and has been doing this for months. Well, tonight, I did everything the same, but when I went to remove his ears, he starting fighting to keep them on. He REALLY wanted to read 'Brown Bear, Brown Bear' one more time. Mind you, we read this book about 20 times today!!! He wasn't trying to procrastinate, he just really wanted to hear it one more time before bedtime. I was saddened by the fact that he knew his sound would end and he wanted to hear the story one more time before silence, but also elated that he WANTED to HEAR the story one more time. I did end up reading the story one more time and he loved it just as much as the other 20 times today. I really hope his auditory memory is good enough to replay the story in his head as he went to sleep tonight. It warms my heart to think that he was replaying the sound of my voice with each animal in the book as he drifted off to sleep.

twinkling lights aren't for show

Ever since Halloween, people have been commenting on the blinking lights on Kevin's ears. He gets at least 2 comments a week these days. Most people think that I put 'twinkling' lights on his ears to be cute. It is somewhat amusing to see the reactions of people when they say something, come over to see them, and then realize that the lights aren't for show. They never know what to say and are afraid they offended me. I quickly smile and say something so that they don't feel embarrassed, but they usually run off quickly. I just find it interesting that everyone thinks my son has the 'coolest' accessory around! Maybe I can market some twinkling lights for kids without CIs. Now wouldn't that be a twist on this journey!!! :)

Becoming a big boy

Kevin seems to be turning the corner from baby-toddler to toddler-kid right before my eyes! The other day at his oral-deaf school, he really impressed me and made me realize that he isn't a baby anymore. They always start the day with a music session and since he only goes on the day when all the 'babies' attend, they sing baby songs. One of the songs they sing is Patty-cake and they end the song with hand movements of 'marking it with a B-B-B-B-B'. Kevin took part in this and sang right along moving his hands and saying 'B-B-B-B-B' somewhat with the right timing of the song. He also did the same thing when they sang the vowels and ended with the short sound of the 'U'. He moved his hands and sang 'uh-uh-uh'. He loved it!!!! He also ran around with the older kids and seemed to fit right in. This is a major turning point because up until then, he wanted me to hold him during song time because he felt uncomfortable with all the chaos of that time.

We started gymnastics on Monday and the coils stayed on surprisingly well. While ont the trampoline, they sometimes fell off, but not too bad. I was pretty pleased. The next thing I need to do is try to figure out a way to put a helmet on his head without the coils falling off. His big brother is getting a bike for Christmas and so Kevin will inherit the trike and I want him to wear a helmet when riding. I think I might try a skullcap, but so far, Kevin has not 'allowed' me put anything on his head yet. Reasoning with him is still pretty difficult, after all, he is only 19 months. We'll see how this goes.....!

And the scores are in....

Kevin had his first language assessment since he got his CIs last week and today I got the results. Kevin is measuring cognitively at 24 months, receptive language at 20 months, and expressive at 18-20 months. Kevin is only 19 months!!! Wooo hoooooo! Now, this isn't a speech evaluation, which would assess articulation, but his understanding and use of language is way beyond my wildest expectations at such a young hearing age. I am so proud of him. I guess this hard work from everyone, especially Kevin, is paying off.

I have a name!

Mama!!!

Yes, Kevin finally has said Mama! He has said Daddy with complete clarity for the past couple of months, but my name has always been 'bity'. Today, I finally have a real name.... Mama!!! What a wonderful day this has been! :)

Back in Stereo

Well, Kevin is back with two processors again!!! Yea! He fussed (screamed) for about 15 minutes, but once he realized what it was he was hearing, he seemed to really enjoy it again. We have him at %50 volume and will slowly turn him up over the course of the week. He was in a really good mood tonight and even ate his dinner. I wonder if hearing with one ear was just draining on him and making him fussy? He seems to be back to his good-natured self, which is a nice change to see! Hopefully he continues to like his implant again and we can move forward!

He was talking up a storm today too! He said bye-bye (instead of bye) and yo-yo. He also has the cutest growl for a lion! I can't wait to get that on tape!!!

It was a long day and I am exhausted, but at least today's outcome was much better than the visit to the Dr. last week!

LTH Conference

John and I attened the Let Them Hear Foundation conference last Friday and Saturday. It was really a great conference!  The focus was on children with cochlear implants, so much of the information pertained to us. It was also great meeting people who are in our situation. We met some really great friends whose son was just bilaterally implanted. I am looking forward to getting our kids together. I think it will be a great friendship for Kevin to have.

We go back on Tuesday to put Kevin's processor back on. I am pretty nervous about this, but I do believe that we are experiencing difficulties due to the fluid in Kevin's ear. Hopefully we won't have to use too much 'tough love' to get him to like it again. I hope he cooperates with us! Keep your fingers crossed!

His hearing is continuing to improve. I was sitting behind him tonight and asking him to point to many objects, and he did it flawlessly! His expressive language is growing, but he still doesn't have too many perfectly clear words. I know what he is saying, but others might not. Hopefully he will develop that skill set soon and start talking more and more!

Hopefully the next time I write this, Kevin will be back to being bilateral!

Happy Halloween!

Kevin had a wonderful time trick-or-treating tonight. He really got into it and ran up to ring the doorbells and held out his bag. He even said Trick-or-treat! ("tr-t-tr"). I was very impressed!

I realized my last note sounded so depressing, so I wanted to give a more positive outlook tonight. Things are still going welll here!
Happy Halloween!

Another hurdle

We have another set-back with Kevin's implant. I am so frustrated because before his fall, everything with both sides were just 'perfect'! So, when we put the implant on last week, he liked it for about an hour and then started fussing. After trying for another day to have him wear it, we noticed that his implant site was swollen. The Dr. said it might not be fully healed, so we had to wait another 2 days before putting it on. 2 days later (last Sunday) we tried it and it worked just fine for 2 days. We had the volume back up to full volume and he didn't mind it at all. Then, yesterday, when I put it back on, he screamed out in pain. I took him back to the Dr. (another 3 hour drive one way) and he said that Kevin has fluid in his ears. He has a TERRIBLE cold right now and with all the fluid in his ears compounded with his incision being a bit sore still and him still getting used to having his right side hearing back, it just was a recipe for disaster. The Dr. wants me to wait another week, go back and see him to make sure his ear is dry and then try it back on again. I am really nervous that there is more to it than just a bad cold, but all signs lead to this simple solution. After all, it DID work for 2 days! So, we are in a wait and see mode. I am sure I will have a hard time getting him used to wearing it again. He is going through a difficult phase right now where he doesn't want to do anything you ask of him, and getting the implant to stay on will be tough. I'm really not looking forward to it.

I'm ready for something to come easy for him. Let's just have the implant heal, have him like the sound and move forward again! I know this note sounds discouraging, but I too have a cold, am extremely tired from driving back and forth many times, and just want things to be back to 'normal'.

For all the anti-CI people who read this, please don't take this as an opportunity to bash CIs and say what a terrible thing it is to put your child through this. Until you see the difference in your child when they can hear compared to when they can't, you will never know what a blessing these devices are, despite some challenging times. Kevin just lights up when he puts his CIs on in the morning. Sure, he could go through life without one and be very happy and content, but he truely comes to life with the CIs on! Even after having to deal with this, I have never doubted my decision to implant Kevin!

October 26 came and went

Well, October 26 has come and went. Last Friday, October 26, marked the day that we knew Kevin couldn't hear. It wasn't 'offficially diagnosed' until Nov. 2, but on October 26, 2006, we took Kevin in for his follow-up behavior hearing test and he didn't respond at all. The test was marked as being inconclusive, however, we both knew. We both knew Kevin couldn't hear. Every emotion in the book ran through us. We knew our perfect little boy was going to have to go through life with a disability. We knew our lives would forever change. We knew our first son wouldn't have the relationship with his brother that we always dreamed of. We were completely devastated. It took every ounce of our being to just walk from the audiologist's office and drive the 30 minute drive home. Luckily, my Mom was there watching our older son, and we were able to just drop Kevin off in her arms and go straight to our room to cry and hide in bed. I remember not wanting to come out of bed and deal with things. I wanted to just keep my head buried forever. We both cried for days. I remember wondering when the day would come that I would wake up and not feel like I was living a bad nightmare.

Well, eventually that day came. We forced ourselves to deal with it. After all, everything we read was that with hearing loss, early intervention was SO important. We started to tell a select few friends and family that Kevin might be deaf. (We told the rest of our friends and family after the official diagnosis on Nov. 2) We told our older son that Kevin couldn't hear him. We started interviewing surgeons. I felt like I was simply going through the motions of life, doing what I was supposed to be doing, but not feeling anything.

How life has changed from one year ago! Kevin is a very happy, well adjusted boy who hears and interacts just like his hearing peers. Ethan and Kevin have the relationship that I always dreamed they would have. We do everything any other family with young children do. Basically, our life is pretty normal. Yes, we do go to therapy and I am constantly talking to my son to help him catch up in hearing. I point to my ear to show him that yes, I do hear that too. But, all in all, our life is about as normal as it can get. We are all in a really good place right now. I didn't know the raw emotions I had one year ago could heal so quickly. I admit, there are still times that I get angry that it is MY son who is deaf, MY son who has to endure everything he goes through, MY family that was affected, but those times are getting fewer and farther between.

I can honestly say that I am thankful for everything this past year. Thankful for the technology that allows him to hear so well. Thankful for all the people that I have met to help me cope with everything. Thankful for the surgeon and audiologist for being so incredibly talented in their field. Thankful for my son who has the personality to not let anything get in his way of accomplishing what he sets his mind to do. While it wasn't my dream for my son to be deaf, I can't imagine life any other way. His hearing loss has taught my whole family a lot about what is important in life.

I heard the following saying too many times to count, "God doesn't give you more than you can handle". I used to get soooooo infuriated when someone said that. I wanted to be the weak person who wouldn't have to handle this because they couldn't. I thought I couldn't handle it myself. What I have learned is that the saying is true. You might not know you can handle a situation, but you gather all the strength you have and rise to the occasion to do what you have to do. I am stronger than I thought I was. My marriage is stronger than I knew. There was nothing weak about myself or my marriage before Kevin was born, but both are stronger for having had to go through this.

So, October 26 has come and went. I meant to write a post on that day, but we had company in town and I was busy. The anniversary wasn't as hard as I imagined. I think it is because Kevin is right on track for being the well-adjusted child that we always imagined we would have. I look forward to all the future 'milestones' that Kevin will reach!

Post-op report and a great day!

We had the post-op appointment today and the Dr. was absolutely thrilled with how well Kevin has recovered. In fact, he can start wearing his procecssor about 50% during the next week until his incision is completely healed. The Audi did some testing on the mapping to make sure everything stayed the same and everything looked good. The impedence levels were a little different due to the fact that his ear hasn't been stimulated in almost 2 weeks, but she said it would quickly go back to normal. He seemed totally fine when we turned it back on. yea!!! I'm glad to have his bilateral hearing back!!!

I am so thankful for many things regarding this accident. I feel very fortunate that Kevin's Dr. was not traveling, as he sometimes does, and was able to get Kevin in for surgery so quickly. I am also thankful that Kevin was well. He has been battling colds and even had the stomach flu the week prior to this, but last week he was 100% healthy! If he is going to fall, at least he has good timing!!! :)

Kevin reached another milestone today. He walked up to a complete stranger and initiated conversation! He walked up to a little girl and said 'hi' very clearly! My deaf son started a conversation! I almost cried right then and there! He is definitely not my shy one!!!

Another interesting thing happened today. While we were waiting for Kevin's appointment, I was entertaining my 3.5 year old hearing son. We ran into another little boy (15 months) with bilateral implants. After Ethan saw the boy, he said, 'Mommy, Look' and pointed at the boy. I told him, 'yes, he has the same ears as your brother has. Isn't that neat!'. Ethan then said, 'no, mommy, he is wearing a Lightening McQueen shirt!'. I was completely taken back. I thought he was looking at the implants, but he was just looking at the shirt. This was a big lesson to me. We, as adults, often think that outside appearances matter so much and are so self-conscience of what other people think. Children, bless their hearts, just look beyond appearances. It doesn't matter what someone looks like to them. They just enjoy the person for who they are. I wish everyone could have the innocence of children with respect to this. It was really a beautiful moment for me to witness.

I haven't really mentioned Kevin's love for music much on this blog. It is quite remarkable, but he just loves music and dances to it all the time. He even tries to sing the songs. When we are church, he just belts out the songs! So far, cochlear implants hasn't had a negative impact on his love and appreciation of music. I wonder if he will be playing musical instruments in the future???...

So, all in all, this is a good day. I'm really glad because this Friday marks the 1 year anniversary of the beginning of the diagnosis of being deaf. It is amazing how much life can really change in just 1 year!!!

Get Ball

I forgot to mention that 2 days ago, Kevin said his first phrase. It was 'get ball'. It was pronounced more like 'gt ball', but he pointed to the ball and then looked at me. Yea.... he reached another milestone! I'm so proud of him!!!

It was option #1!

What a relief! Kevin went in for surgery today and it ended up being option #1. Only the magnet popped out! The implant is working fine and Kevin will be able to wear the processor next week. He recovered like a trooper. By this evening, you would never know he had surgery today he was bouncing all over the place. Considering how rare this is to happen, he is definitely a very special boy. Note in the picture that his bunny was also bandaged up during surgery. We thought it was so cute, but when Kevin woke up, he didn't seem to think so!

Unfortunately, he couldn't wear his other processor today because his head is all bandaged up, so he was back to being deaf. I haven't spent a day with him completely deaf in over 7 months. I was quickly reminded that he is indeed deaf, and how much work it is to play with him when he can't hear you. There is so much more gesturing and touching and eye contact. Cochlear implants are truely miracles for these little ones.

So, while this accident cost Kevin to have another surgery, a week of our life, 10 years of aging due to stress, and our insurance company 10s of thousands of dollars, hopefully it will just be a blip in the road of his hearing life. He should be back on track by next week. This journey is definitely unpredictable!

I also wanted to comment on how much I miss his bilateral implant! In just the 4 days of not having bilaterals, Kevin was not able to locate as well and definitely didn't hear as well as he does with 2. We had to either repeat words or say them louder to get him to really understand us. After seeing how much better Kevin does with 2 implants rather than 1, it is a crying shame more insurance companies don't cover 2 implants.

Ok, I am exhausted right now. It has been a long day. We were up at 5am and then drove home today as well (2.5 hours). Thank you for all the prayers! They were answered today!!!

Kevin broke his implant

Well, things instantly went bad on Sunday. It is one of those situations where you wish you could just go back in time. I was making dinner and my MIL and friend were watching Kevin in the backyard. He fell out of a wagon and on his head and hit it just wrong. During the impact, the internal magnet popped out somehow. There are only 10-12 reported cases of this, so this is extremely rare! Leave it to Kevin to find another way to become a rarity!!! Anyway, he is going in for surgery on Thursday to fix the problem. The only question that remains is is hte internal implant broken too. Here are the 3 different scenarios we are looking at:

1. Best case: Only the magnet popped out. The Dr. can just pop the magnet in and only has to do a small incision. Kevin will be back up and hearing with his old map in about 2 weeks.

2. Medium case: Only the magnet popped out, but it is because the internal casing holding the magnet broke. The Dr. will suture the casing shut or add a silicon piece over the manget to hold it in place. Kevin will be back up and hearing with his old map in about 2 weeks. Hopefully the casing will last and there aren't any complications from it.

3. Worse case: The internal implant is damaged. The Dr. will need to explant/reimplant a device. This is risky because you don't want to damage anything during the extraction process. Also, maybe the new one won't be implanted as well as the old one. Then we have to start mapping from square one. Kevin might not like the new sound. It won't sound like his old implant, so he will have to adjust to the new sound and hopefully like it without ripping it off of his head. We have to do therapy to get his new ear up to speed with his old ear. This list could go on and on....

Please pray for option #1. Kevin was doing soooo well and I don't want anything to get in the way of him reaching his full potential. I just hate having to put him through another surgery. This one is harder for me and I think it is because he is older and more aware. I am just sick to my stomach about this accident. The fall wasn't even a hard one, just in the wrong spot.

Please pray for Kevin this week and especially on Thursday!

Gymnastics party

Yesterday, Kevin attended his brother's friend's birthday party at a gymnastics place. There were trampolines, bounce house, swings, foam pits, and much more there. I was curious how Kevin would do there because I am planning on enrolling him in classes there next month, and I am please to announce that he did fantastic! He loved every minute of it!!! He followed the directions of the teacher very well, was just as into everything as his brother's 3 year old friends, and the best of all..... his ears never came off once!!! Not with the jumping, foam pitting, or bounce house!!! Can you believe it! The wig tape really holds them on well. I am just so pleased!

On the way out, he and his brother were going ahead of me and I said, 'wait, stop and hold my hand in the parking lot'. Kevin stopped, turned, and held out his hand. I didn't even know he knew that phrase. I never 'taught' that one. It continues to amaze he how much incidental language he is picking up! He is doing soooo well!!!

I also came to the realization that Kevin has the personality that he will NEVER be left out of anything. He was right there with the big kids and wasn't phased by anything. He is fiercly independent and will not let anything get in his way. While this might pose a challenge for me in raising him, I think it is a great characteristic to have giving his hearing loss. I just couldn't be happier with how he managed the party yesterday. These little 'triumphs' just keeps me beaming!!! Yea!

This pictures are of Ethan and Kevin at a pumpkin patch earlier in the day. I just thought they were too cute!!!

Disneyland

We just got back from our Disneyland vacation! Kevin did really well with all of the excitement and sount stimulation. He didn't get scared of any of the sounds, which I thought was really great considering so many of them are loud. He did seem to have a harder time hearing us because of all of the loud background noise, but at least he wasn't aggitated by all of the noise.

We stayed with my brother and his family and Kevin actually started calling my nephew Max, 'Ma'. I couldn't believe he could say his name! He also called their dog Tinker, 'tnker'. It was very high pitch and quiet, but he was definitely trying to say it.

The whole vacation went really well up until he got the stomach flu on Saturday night. He is still recovering from it, but his spririts seem to be fine.

Just knowing he could hear 'It's a Small World' brought joy to my face because last year we went right before he was diagnosed and there was so much uncertainty. I love Cochlear Implants!!!

Baptism anniversary

Today marks the 1 year anniversary of Kevin's baptism. This is going to be a hard month because it is the month that Kevin was diagnosed as being profoundly deaf last year. While I can't believe the progress that he has made with the cochlear implants, it is hard to think back to the time when he was first diagnosed. Those seem like such dark days in my life. I never thought life would natural and happy again, but here we are today and things are just about as normal as normal could be. And.... we are all happy! :) For some reason, though, I find myself emotional when I think about everything that has happend this last year. I haven't cried over Kevin's deafness in a long time, but the last week, there have been many occasions where tears have been shed. I guess while I am soooooo elated at the progress that he has made and couldn't be happier for Kevin with how he is doing, I still mourn the loss of his hearing. The sadness isn't nearly as great as it was a year ago, but I guess it will always be there, to some extent.

The significance of the anniversary of Kevin's baptism is great because for me, it marked the day that I realized and actually believed he could be deaf. At this point in time, the official diagnosis was still that he had normal hearing, but John and I were having serious doubts about it and were preparing ourselves for the 6-month follow-up behavior test on October 26. During the baptism, there was a guest pastor and the woman who spoke told of her life story as a disbled woman. She was born with birth defects and had to overcome adversity and is now living a normal and happy life as a pastor. She is married, has a family, and despite her challenges in life, she has succeeded in what she has set out to do. Her Mom then spoke and told her story that she had a 2 year old and was expecting their second child and everything was supposed to be 'normal'. When her child was born with birth defects, it took them by such complete surprise and they didn't think their life would ever be the same again. While it wasn't the same, it was still a wonderful life and they were a very happy famiily.

The story had such similarities as ours. Our older son was 2 when Kevin was born and when Kevin failed his newborn screening, it took us by complete surprise. When we thought of our child as being deaf, I just couldn't even bear the thought of it. Because of the mis-diagnosis when Kevin was 1 month, there was this uncertainty about his hearing and we were constantly testing him at home. I just kept praying for 'a sign from God' to put us as ease about it. If this ever was one....! I came home from the baptism with complete certainty that Kevin was deaf, but also at peace that everything would be ok. And, here we are today, he is deaf and it IS ok!

I ran into the Mom of the guest pastor yesterday, Lois Scott, by coincidence, and finally was able to thank her for sharing her story and told her how much it meant to me to have her daughter speak at Kevin's baptism. God definitely hand-picked that sermon for Kevin that day.

boat

Kevin said a word today that I didn't even know he knew! I gave him a sippy cup and there was a picure of a boat on it. He turned it around and pointed at it and said 'bt'. This is just the beginning of him starting to say things that he is learning immplicitly (not being taught by me). Let the fun times begin....!!! :)

I realized after I reread my last post that I forgot to mention other words he has 'mastered' (meaning he says with the same clarity as my 3.5 year old):
Ow
Owl
ball
Bye
Daddy
Doggy
juice
no

Pretty fun! Not bad considering his IFSP listed a goal as being able to say 3 words by November. Note, he has many other words, just not with complete clarity.

ADRO working great!

It has been a few weeks since we turned on ADRO and Kevin seems to be liking it. I think I notice a difference in his talking. Maybe I am just looking too hard, but he does seem to be talking more and better. He still doesn't say too many real words yet (bun for bunny, mnnn for moon, etc), but his intonation is great and he has 'baby talk' for a lot of words. He receptive language is great!!! The other day, I was talking to a neighbor about us going to see firetrucks for a field trip and all of a sudden Kevin started doing a siren sound. He heard the word firetruck and picked it out of the conversation I was having. It is truly remarkable!

Kevin contines to love his music class. I can't believe how well he does in it! He is so vocal and loves to dance to the music. I am excited for when his articulate language comes, but at least he is communicating really well right now!!! I have to remember, he is only 17 months old! :)

His two favorite words continue to be Daddy and Doggy. He has perfected both of those! 'Mommy' has been all over the map. Anything from 'bobby' to 'pr-ty'. I'll be celebrating the day he actually says 'mommy'!!! :) The audi says it is normal for his language to develop like this, but you would think he would have perfected mommy before daddy!!! :) hahahaha! Just my competitive side coming out....

ADRO

I turned on ADRO today for Kevin. He didn't seem to mind having it on, which is a relief considering he was so upset with the last map change. He only wore ADRO for about 5 hours today because I changed it after his nap, but his talking did seem to change a bit. Maybe I am just looking for something, but he did seem to speak the words less breathy. We'll see how it goes...

He loves his music class! We went to the 2nd one today. It is ironic, but he is one of the most vocal kids in the class! He 'sings' the entire time. It almost makes me cry to witness it because I am just so happy that he can experience the music and seems to really enjoy it. I definitely want to keep up the class for while. I think it is helping with his babble and lets him explore more tones when he talks.

full comprehension

Today I was amazed at what Kevin comprehended. I was leaving a store and told him that we were going home to see Daddy. He got excited about that. When we got home, the garage door was closed and Daddy wasn't outside like he was when we left. Kevin held up his hands like he does when he doesn't know something. I said, 'Maybe Daddy is inside.'. Kevin got all excited and wanted out immediately and then ran to the door to go inside. Once inside I said 'where is Daddy' and Kevin said 'Daaaaddddyyyy!'. He understood the whole sequence of the conversation from leaving the store until Daddy was found. Amazing....!

It was a cold...

Kevin has a cold today. He caught it from Ethan, his brother, so I am not surprised by this, but I think he was so cranky yesterday not JUST from the mapping, but also from coming down with a cold. I don't know if he would have reacted to adversly to the program if he felt great, but I do think it is right to stop using that old program. He seems to be hearing so much better with his old one. He is back to hearing the quietest of sounds like my husband's cell phone notifying him of an email and house fans.

He can now also say 'bun' for bunny, which is his special stuft animal. Being able to communite with words makes my life sooo much easier. We are still in the guessing game phase, but I think in another 6 months, he will be talking quite a bit!!!

1st bad mapping

We went in last Wednesday (5 days ago) to get re-mapped. Annie (the audi) tried to bring up some of the lower frequencies based on what I was telling her Kevin was doing. She thought he might be getting too much high frequency, so she went against his neural test results a bit. She said it would either be very positive or very negative for him. The last few days have he has been fussy and this evening he refused to wear his processors for the first time EVER! Needless to say, I was very worried about this, but as soon as I put on the old map, he was very happy and wanted to wear them again. What a relief! I was so worried that he wouldn't want to wear them at all!!! It was quite a stressful night for me. I just want things to go smoothly and never want him to be in pain, which I guess he was in. Events like this make me sad that he just can't hear like the rest of us, but I am sooooo grateful for the technology that we have been given to allow him to hear as good as he does.
This is a big reminder that there will be ups and downs with this process. Not that this was a big 'down', but there will be challenges along the way. The whole process is very trial and error, especially until they can tell you if it sounds better or worse. I just have to have faith that they are working at their top potential and that he will continue to do great. So far, so good! In a few weeks, I will turn on ADRO, a special program designed to make speech clearer. Let's see if he likes that program!

Kevin 6 month hearing update

We just finished creating a video of Kevin's hearing progress at the 6 month mark. I can't believe it has been 6 months already!!! Time sure does fly when you are having fun and things are going well. I can't believe the progress that he has made over the last few months. He has a lot of words in his vocabulary and understands soooo much! His newest word is 'ball' very clearly! He got a new map today which will raise the lower frequencies, so that should help with speaking clearer. We will also begin using ADRO in a few weeks.

The mapping today was soooo difficult. Kevin is at an age where it is extremely difficult to have him sit still. We didn't get a clear reading in the sound booth. Thank goodness for neural response testing!!! He was such a wiggle worm the entire day, but all in all a very good boy. It was a lot for him to go through.

Here is the link to the video:
http://www.youtube.com/watch?v=2W1CFeTy5BE

Hope you enjoy the video!

Exciting progress

I am quickly finding out that the development of language with a cochlear implant child is similar to the development of everything else of a child. There are times when it seems like nothing is changing and then all of a sudden, boom, so many new skills are acquired! After being in a few weeks of non-changing, this last week (and specifically weekend) have been so much fun to witness. I'll write about this after I tell you about our weekend:

We flew down to Legoland last weekend and unfortunately, Kevin started to get a runny nose the morning of the flight. After landing and taking a nap in the car, he woke up looking very pale. He seemed to have lost his sense of balance. He couldn't stand or walk! It was very scary and I took him to the doctor and they said he had a slight ear infection, but most likely it was due to fluid in his middle ear. Hopefully this isn't a recurring theme with him....!

We had a great time at legoland and took advantage of the disability program they have there. It is kind of like a fastpass at Disneyland and lets you cut in front of the line. I thought I would feel more guilty about using this, but it is the little perks in life that keep you happy.

Anyway, on to Kevin's progress. He now says 'doggy' and I think he said 'grand-pa' today in the bathtub. I'll have to keep my ear out for that one again. He also clicks his tounge on command. I am really happy about that one because it means he is doing something different with his tongue and that will help with his expressive language. We were at a loud restaurant yesterday and Kevin was acting up, so I put my finger to my mouth and said 'shhhh'. He repeated it back to me! He said 'shhhh'. I can't believe he heard that with all the background noise! He also fake sneezes by putting his head back and then pushing it forward and saying 'sh' at the end like the end of a sneeze! :) I love that one! He also pants like a dog when he sees one and says 'ha' for hot when something is hot.

The most impressive thing happened today! I was having breakfast with Kevin and Ethan and doing the typical morning conversation and the toaster oven dinged. Kevin put his finger to his ear and looked at the toaster oven as if to say, I heard that! He then wanted me to go over and get the waffle out. He also got up and went to his changing table today when I said 'you have a poopy diaper, let's change it'. He is understanding soooo much! I love it!

As you can tell, this is a very happy day for me. I love to see the progress in his hearing!

Bye-Bye

Kevin finally said bye-bye today! He always waves when someone says 'bye-bye', but today in therapy we were really working on getting him to say it and he finally did! It was a very breathy 'bu-bu', but at least he knew what he was saying. We are on our way to the verbal world!!! Yea! One thing a having a deaf child teaches you is to stop and enjoy EVERY bit of the language learing process.

How well can he hear?

Most people ask how well can Kevin hear with the cochlear implant? Today, I think I have a great example of just how well he can hear and it is only 4.5 months post activation! We were swinging on a swing today at the park and another girl was swinging sitting the opposite way from him. There was the typical park noise and I was saying my typical 'swing high' and 'wheeee' sounds. The man pushing the girl (behind Kevin) ask his little girl for a 'high five'. As soon as he said that, Kevin turned around and held up a hand to give him a high five!!!! I was sooooo excited!

Also, last weekend at a 4th of July family event, there was a lot of comotion with all the kids running around and we asked Kevin where his belly button was. Kevin was standing about 10 feet from us and he pointed to it. Then we asked him where was Matthew's belly button (cousin) and he walked over and pointed at Matthew's belly button.

These are just some of many examples I am coming across that show just how great Kevin can hear!!!

On the expressive language update, today Kevin saw a cotton puff that we play with and he started saying in a very breathy tone 'pu, pu, pu'. He was really trying to say puff!!! He also tried to say 'that'. When I hand him something I make him say 'I want that' and then he has to repeat it to get it. This enforces the use of his voice and teaches him that his voice is powerful. Anyway, when he said it, there were distinct words and it almost sounded like he said 'that'. Pretty cool!!!

His receptive language has really skyrocketed, so I am assuming his expressive will not be that far behind!

Mapping

Kevin just had his 3 month post activation mapping session today. He did fantastic!!! He heard down to 20 db and was consistent between 20 and 30 db across all frequencies. Some of hte soudns were so soft, I had a hard time hearing them! I can't believe how well he is hearing. What an incredible baby!!!

Everyone is so proud of how well he is doing. He was a very antsy little guy, but my Mom and a friend were there to distract him. At least he was in a good mood and not fussy. They didn't change the maps much, so that is a good sign that he was hearing pretty close to normal before this session.

Long day... I'm beat!

Realizing he is different

Kevin is starting to realize that he hears differently from other people. I knew this day would come, but I didn't realize he would start to understand at 14 months! Yesterday, he walked over to Ethan and touched his ear and pulled it back to check. Then he walked over to my ear, pulled it back and checked mine. Then he felt his and touched his processor. Seeing things like this is when it hits me with a ton of bricks that yes, he is deaf. I have a tendency to forget at times and then I see or hear something that brings me back to reality and it makes me sad. We had a big waterslide up this weekend and I put Kevin on it, but he doesn't like to be without his 'ears', so he didn't want to be on it. Then, I see other kids his age just crawl around on it having fun, and I think this isn't fair. But, that is life and we have to take what we have.

On a positive note, the technology still continues to amaze me and Kevin's progress does as well. He now points to his ear when he hears something and then points to the sound. That amazes me! I can't believe that he can do that already! As sad as I get at times, I am constantly encouraged at how well Kevin is doing and how close he is to his hearing peers in speech and language development.

The other day Ethan was walking around banging pot lids together. Kevin grabbed 2 and started joining him. There was so much racket in the house, but I loved it!!! You know why? It was great to see that Kevin wanted to join in because he could hear how much fun Ethan was having. Yea!!!

more words

I just had to update the list of words that Kevin now can say. In addition to the last post, he also says Ehtan, open and when he saw a banana, he said 'b'. It is so much fun seeing him learn language! I completely took for granted that Ethan would learn to talk and never really took time to watch him develop his language skills. Now that I know what a miracle it is for Kevin to even be able to talk, I am enjoying every minute of it!
We went to the Audi yesterday to get a re-map, but the computer system went down from a recent move, so we had to reschedule for next week. But, they did manage to get a booth test in and Kevin was hearing at 30db. We think he can hear better, but he had a terrible cold when they tested and he wasn't the most cooperative.

Kevin got a new replacement controller because there was a crack in the other one. I originally liked it better than the old one because the design made it a little easier to use, but now I think it might be too easy to push the buttons and Kevin might have turned it off during a diaper change by laying on the button. I'll have to keep my eye on that and see if it happens again.

3 Month Progress

It is amazing that only 3.5 months has passed since Kevin was activated! He is making such incredible progress. I am soooo proud of him! To date, he listens and understands much of what I say. He can follow simple tasks such as: stop and turn around, on your bottom, go get that, etc. He also says 5 words!!! He can say more, moon, up, ball, and bird. While they are not perfectly clear, he is defiinitely saying them! How can this be possible after only hearing for such a short time? Cochlear implants are truly miracle technology! Life is somewhat normal now with the exception of twice weekly therapy and constant talking on my part. Kevin is starting to let us know if one of the coils fall off, so that means he really likes sound more than quiet.

So far so good with everything. Keivn is a hard worker and he is proving to everyone that this disability will not be a set-back for him!
I'll try to update more frequently...

Story describing our journey

I recently came across a story on the Internet that described our journey from Kevin's diagnosis to implantation to a tee! This story could be about us if only we replaced our names with theirs. It gave me the chills to read because it was so accurate with the emotions we encountered while dealing with the diagnosis of Kevin. I wanted to copy this to my blog so that I will always have it, but please note, I did not write this.

From www.kidshealth.org
March 26, 2007

The audiologist rechecked the connections and made sure the earpieces were still firmly positioned in Sam's ears. Even as the noise being pumped directly into his head became audible to the rest of us, our infant son slept.

Limp lines crossed the computer screen for half an hour, and I got the sinking feeling the audiologist only continued to stare at them to avoid making eye contact with my wife and me. She was girding herself to share bad news.

Only 3 months earlier, our second child, Sam, was born and we enjoyed one of the happiest days of our lives. This day was one of the saddest. The fear that we both carried but largely avoided discussing was confirmed: Sam was deaf.

Now, Sam is almost a year old and we're quickly approaching the day he will receive a cochlear implant. It's an exciting time for our family. The pain we felt on the January morning when his hearing loss was confirmed faded as we learned about hearing loss and how the implant could help Sam navigate a hearing world. Information has been our lifeblood, and we hope sharing our story benefits others who face similar situations.

A New Reality
With no family history of hearing loss, my wife, Teresa, and I never considered the possibility that we might have a child who was deaf. And when Sam failed his newborn screening the day after he was born, the woman who performed the test told us inaccurate results were common. A month later, Sam failed another screening at our pediatrician's office. The audiologist explained that the parts of Sam's inner ear worked, but the equipment wasn't showing a response from the tiny hair cells inside his cochlea. Leftover fluid from birth was the likely culprit, he said.

Any explanation seemed reasonable because the idea that our son could have a significant hearing loss seemed so unreasonable. Still, we were coming to grips with that reality. Medical professionals, family, and friends all asked the same question: Does he respond to loud noises at home? Each time we answered that question we were forced to be a little more honest with ourselves.

Whether Teresa yelled his name from across the room or I clapped my hands just behind his head, Sam never budged. We debated his blinks and gestures, but we were just being wishful. That became clear at the third hearing screening, when the audiologist was noticeably somber. There were no new possible explanations to consider this time, just a recommendation that we make an appointment with a children’s hospital for a more involved test.

On January 9, we arrived at the hospital for an ABR (auditory brainstem response) test. The audiologist escorted us from the waiting area to a dimly lit room filled with computer equipment and wires. In a soft voice, she explained the test and told us it would take about an hour. It didn't.

Her demeanor was a comfort as we settled in for the test, but as the test wore on we could read the growing disappointment in her face. Teresa was sobbing and I was choking back tears as the audiologist turned to us to explain the outcome.

The test measured Sam's brain waves in response to sound at various volumes and pitches. He showed no response. That means he never heard his mother's lullabies or his 2-year-old brother's laugh. In fact, based on the results, Sam wouldn't hear a freight train if he were close enough to feel the wind on his face as it rushed past. The audiologist said it differently, but those were the harsh facts as I saw them.

Teresa and I asked about everything from the finer points of the word "profound" to the reliability of the testing equipment, even though we knew better. After a few minutes, the audiologist excused herself to give my wife and me time alone. We held a tight embrace and cried.

Sorrow, Guilt, and Fear
We had been through the common ups and downs of being new parents, but this was our first experience with full-fledged parental anguish. We were wounded and helpless, afraid to leave the room. Sorrow, guilt, and fear filled my mind as I thought about how ill-equipped we were to help Sam.

"It’s not fair," my wife said between bouts of tears. She searched for answers where there were none: Was it the glass of champagne she drank before knowing she was pregnant? Could it have been the cream the dermatologist prescribed for a rash? Or was it the delivery itself? To me, determining the cause seemed less important than figuring out what to do.

What would we do? Sam seemed like a different baby. We loved him just as much as before, but we weren't sure how to help him. We hugged him, kissed him, put him back in his car seat and, with business cards, reading material, and videos in hand, began to make our way out of the hospital.

We shed a lot of tears over the next few days as we told and retold the news. We began meeting with various medical professionals almost immediately. Family and friends called and visited, helping us get back into a normal rhythm.

One visitor, my brother-in-law, got me to laugh for the first time by reflecting on when his daughter got a liver transplant. "Do people tell you God doesn't give you any more than you can handle?" he asked, hitting on a line of encouragement Teresa and I had heard more than once. "I used to say, 'If that's true, He must have me confused with someone else.' "

It was the perfect way to describe how my wife and I felt as our journey with Sam began.

Try to remember leaving the maternity ward with your first child. There's no owner's manual or toll-free help line, just the weighty realization that you are on your own with the fragile little person whose car seat you can barely master. Now multiply that feeling by 100.

That's the way Teresa and I felt after learning that Sam was deaf. We didn't know a thing about deafness or cochlear implants, but in the 9 months between Sam's diagnosis and surgery we committed ourselves to learn. In the process, we empowered ourselves to make decisions with confidence as we navigated the maze of medical, bureaucratic, and practical issues that parents in our position must confront.

We also sought to answer more personal questions. For Teresa, there was a spiritual component. While dedicating herself to reading books and identifying resources in our area, she also held out for a miracle. Meanwhile, I wanted to understand why some people in the deaf community, including one of my coworkers, were so against cochlear implants.

Teresa is a stay-at-home mom who used our children's daily naptime as an opportunity to employ skills she developed as a former bank auditor. If someone at the county level couldn't answer a question about resources available to the deaf, she sought help at the state level. If the state was slow, she contacted a politician. My wife's tenacity is the major reason we became so informed, and I will always be grateful to Teresa for charting our path.

With a full-time job, I did less of the legwork. Still, I made sure my actions supported all of my wife's hard work and lessened the day-to-day stress related to it. We participated in online seminars and watched videos together, and neither of us attended any of the roughly two dozen formal and informal appointments we made without the other. Teamwork made us stronger and more effective.

Lessons Learned
One of the first lessons we learned was to be cautious about jumping on the Internet for quick answers before you know what you're dealing with. We found ourselves worrying about rare, heartbreaking maladies that we ultimately learned Sam did not have. The hospital proved to be a better place for answers. We met with a surgeon the same week that we learned Sam was deaf. From there, the hospital loaned us hearing aids and set appointments for an eye exam, a CAT scan, an MRI, genetic screening, and other testing associated with the implant process.

Teresa laid all the groundwork necessary for a teacher of the deaf from the state's Early Intervention program to start coming out to work with Sam on a weekly basis. She also began what turned out to be a lengthy process to get Sam his own hearing aids through the state.

The hearing aid trial period is a necessary step in the implant process. Given the severity of Sam's hearing loss, the aids didn't provide much benefit. To Sam, they were little more than something handy to grab and chomp on. But we persisted on the advice of a parent that we met. Sam needs to grow accustomed to this sort of equipment, and thankfully his desire to remove and eat his hearing aids eventually subsided.

The hospital gave us contact information for other families whose kids had gotten cochlear implants. Also, soon after Teresa contacted a state agency, we began receiving calls from people in New Jersey's Parent to Parent Program, a statewide network of parents supporting families of children with developmental delays, disabilities, and special health needs. Having changed the batteries, gone to the therapy sessions, and watched their children blossom, families with real-life experience proved to be our greatest resource. Just as there is a deaf community, there is a community comprised of parents whose children have implants.

Reaching Out
People shared their stories and even welcomed us into their homes, filling us with hope. Through them, my wife and I realized that prayer, the blessed oil she applied to Sam's ears, and the trips to Saint Katharine Drexel's shrine would not result in Sam miraculously waking up one day as a hearing child. The cochlear implant would be Sam's miracle, and the kindness of other parents helped us see it that way.

About 5 months into the process, we decided to pursue a second opinion at another, larger children's hospital. I was reluctant to look elsewhere given the level of attention Sam received at the smaller hospital, where we ultimately stayed. While the second opinion didn't provide anything new from a medical perspective, I'm glad we went for it.

The hospital staff invited us to a picnic for families of children with implants. We mingled with parents, surgeons, audiologists and, most important, kids. We got to see and speak with children whose abilities astonished us. We also received firsthand reviews of a nearby school that specializes in kids with implants.

We spoke to parents about sign language. Teresa and I hesitated to pursue signing for fear that it could impede the verbal strides that we hope Sam will make after he receives the implant. The parents calmed those concerns, inspiring us to use basic signs that, at 11 months, Sam is starting to try himself. It's incredibly gratifying to see Sam give his best effort on the sign for milk or smile and kick his legs with excitement when Teresa makes a sign for cookie.

We're not the kind of people who are comfortable striking up conversations with strangers, but we've learned that being more outgoing can benefit Sam. Teresa befriended a young woman with an implant working in Walgreen's and learned that she's thriving in a local high school. After a call to a state senator's office went unreturned, I seized an opportunity to speak with him as he was waiting for his car at Jiffy-Lube, opening a relationship with someone who could someday serve as an important advocate for Sam's schooling.

A Learning Experience
We tried to take any opportunity to learn that arose. I didn't know what to think on my first day back at work when my deaf coworker wrote me a note that said: "I'm jealous. You and your wife are so lucky to have a deaf son." I couldn't begin to comprehend how someone could feel that way, so I accepted his subsequent invitation to learn more about the deaf world.

He emailed me a list of upcoming events, including an all-deaf poker tournament about an hour's drive from my home. On the Friday before the game, I told him I might attend, but failed to be definitive. The next day I felt compelled to go.

My coworker, not expecting me to show up, wasn't there. I was alone with perhaps 60 deaf people in a room filled with gestures punctuated with sounds of slapping and laughter, but no words. I felt very awkward as I struggled to communicate. After about 40 minutes, I found someone's hearing spouse, who volunteered to help me.

Person after person at the poker tournament told me the implant was a bad idea, but their reasoning did not move me. Their opposition seemed to be founded in dedication to the deaf community and in a strong belief that hearing loss is not an impediment. I understood and sincerely appreciated those positions, but the conversations didn't produce the most meaningful lesson of that day.

I was welcomed into this corner of the deaf world with open arms, yet it was clear that I wasn't part of it. I imagined the isolation that I felt as I milled around the room as an outsider would be something Sam could face on a daily basis in the hearing world if we didn't give him the chance to gain the ability to listen and speak. Being uncomfortable there made me very comfortable with our decision to pursue the cochlear implant.

In the 9 months leading up to surgery, we found comfort in the answers to virtually every question we posed. Now we were about to hand Sam over for his procedure, so any unexpected bit of information would give us pause — even what the surgeon had for breakfast.

"Coffee and a danish?" Teresa asked, obviously thinking a heartier breakfast was in order. The surgeon, recognizing our somewhat irrational state, quickly added that he drank some orange juice, too.

The Big Day
People who do this kind of thing for a living say cochlear implant surgery is fairly straightforward. While we have no reason to doubt them, it's difficult to casually digest words like "mastoidectomy" in a description of what is in store for your child. From the moment we woke on the day of surgery, our excitement about Sam's life after surgery was tempered by anxiety about the risks, no matter how small.

Sam's day started at 4:00 a.m., when the window was closing on his last opportunity to drink clear liquids before surgery. He rubbed his eyes with the backs of his hands and gave his mom a big smile, but showed no interest in an early-morning gulp of Pedialyte. Teresa put him back in his crib until we were ready to leave for the hospital a little more than an hour later.

Sam was awake for the entire ride and, despite limited sleep, no food, and no liquids, was in a good mood. Once we arrived at 6:30 a.m., we bounced from admissions to a waiting area to a room just outside the operating room, answering questions and signing papers at each stop along the way.

Sam watched a "Barney" video as nurses hustled in and out to change him into a gown, put an ID tag on his ankle, and check his vital signs. He was unfazed, but Teresa and I grew more emotional as the level of activity let us know Sam would be going into surgery soon.

That's when Sam's surgeon stopped in. We took advantage of our last opportunity to ask him questions, covering topics ranging from what he ate for breakfast to precautions they would take to prevent complications during surgery. The surgeon answered each question with calming confidence. The surgery is the easy part, he told us, no doubt noticing our concern.

Teresa said, "Please take care of Sam like he's one of your own." The doctor promised he would, encouraged us not to worry, and left the room.

Before long the anesthesia team came in. They gave Sam a mild sedative to prevent separation anxiety and let us say our goodbyes. Sam traded smiles with the anesthesiologist and reached for her surgical mask as she carried him away. Teresa and I leaned out the door to watch every step until the two of them crossed through a set of swinging doors.

From there we went out to sit among other anxious parents in a waiting area for what we were told could be a 4-hour stay. A nurse gave us our first update after an hour, then came back an hour later with unexpected news: Things went so well that the doctor was already closing Sam's incision. After meeting with the surgeons about 20 minutes later, we joined Sam in the post-anesthesia care unit.

A Quick Recovery
Sam was lying on a gurney with a nurse by his side, his little head wrapped in a turban-like bandage. His face was a little puffy, but overall he looked better than we thought he would. Sam remained unconscious for a good 4 hours before he began to rub his eyes and cry out occasionally as the doctors transitioned his pain medication coming through the IV — from morphine to Tylenol with codeine.

As time passed, the crowd of children recovering from surgery grew and cries sporadically rang out from different directions. Parents entered the room with an air of purpose that peaked upon identifying their children and then turned gentle as they approached the bedside of their little ones. You couldn't help but count your blessings in that room.

Construction was going on at the hospital, limiting the number of available rooms. In the late afternoon we were moved to a second holding area, where we stayed until about 8:00 p.m. when Sam was admitted for the evening. Sam shared a room with another child who received an implant shortly after him, giving our families a common bond to discuss.

Sam took his first drink at midnight and drank even more at 4:00 a.m. By morning he was ready for breakfast and seemed to be acting like himself. It was a huge relief to see his smile again. A doctor on duty removed Sam's bandage, and the surgery site looked great. A small strip of surgical tape covered a thin C-shaped line that ran behind Sam's right ear. It appeared clean and tightly sutured, relieving concerns we had about the need for us to perform wound-care duties at home. We took turns feeling the quarter-sized bump made by the implant's internal component, located nearby but more toward the back of his head.

Our only nervous moment came when Sam woke from his morning nap with a significant dent in his head from the crib rail. The doctor assured us that it would go away as his swelling subsided, and he was right.

Surgery day was long and emotionally taxing at times, but in the end Sam's doctor delivered on his prediction of a smooth outcome — despite being fueled by little more than caffeine and pastry. We entrusted our child to skilled, compassionate professionals, and they treated him like he was one of their own.

First big CI Moment

It is hard to believe that it has been 4 weeks since Kevin was activated. We have seen him respond to everything from knocks, to speech, to musical toys and stuft animals. Every time he responds, I get so excited and feel like calling people on the phone telling them 'Kevin can hear'!!!

Today, I feel like Kevin had his first big CI Moment. I was rocking him on his rocking chair while feeding him his bottle before bedtime. We have 3 hanging pictures above the chair. One is a giraffe, an elephant, and a monkey. Everyday, after I read his book, I tell him what each animal is and tell him the sound they make. This afternoon, I thought it was coincidence, but he pointed up at the wall when I asked him where the elephant was. Well, this evening, I asked him where the monkey was, and he pointed up at the wall!!! I think he understood me! I can't believe it! He is only 4 weeks hearing and he is already understanding me. I am so proud of my baby boy. I know this is just the beginning, but I can't believe we have already reached this milestone. This whole CI trip has been soooo worth it.

I just had to share! :)

Also, I just read a great story about one parent's journey of finding out their child is deaf to the implant surgery. It is so close to ours that it was erie to read. I honestly could have written this story. Check it out to find out what we went though!
http://www.kidshealth.org/parent/medical/ears/chapter_1.html

Activation Day today!!!

Well, we finally made it to the activation day. This is the day that we have been waiting for since we first found out he was deaf. Kevin did amazingly well today. He smiled the first time he heard sound!!! He was so curious everytime there was sound and looked around. When they did the neural testing, he started to sing at each interval. I can't wait to see him really take off with his language. We started with the left side and got more responses from that side, but I think that is because he was getting used to the sound and was also very tired by the time we reached the right side.

He was soooo wiggly the whole time and it was very hard to hold him still for the mapping, but managed somehow. I think he is going to do great with the implants! He seemed to really like the sound he heard!

Annie (our audiologist) set the setting very conservatively. I will increase the sound over the next few days and then we go back and get it re-mapped. Hopefully we will see him respond to sound more after that.

I am pretty overwhelmed with the new role I play now. The CI falls off very frequently and I feel like it is up to me to get him to talk by providing therapy at all times, but I can't say anything bad about the technology that is allowing Kevin to hear. It is just a little scary today because the realization has set in that this is really happening.

Kevin continues to be a happy little boy and the sound doesn't scare him at all. That is the great news!!! Thank you for the miracle technology that is allowing our little boy hear!!!

Activation Day tomorrow!

Tomorrow Kevin gets activated. I can't believe this day is already here!!! We have thought about this day for so long and now it is really here!!! I have no idea what to expect from his reaction. I just hope he does something to let us know that he is hearing. It would be great if he just looked at us and smiled and understood, but I know that won't happen. Soon enough....!

The real work starts tomorrow. It will start with keeping the processors on his head. I know that will be a big challenge, but hopefully he will cooperate. I am hoping things will just get easier for us from here on out.

I can't wait to report what will happen tomorrow! Until next time...

5 days to go

I am so excited for next week! I know that the reaction from Kevin can range from crying to smiling to nothing at all. I really hope he has some reaction, but I am preparing myself for any of those. As long as they work, I really don't care what he does!!! My Mom is sewing pockets in my onesies for his BWP (body worn processor). It is great having a crafty Mom! Kevin will be set for his clothes. I am kind of enjoying my quiet time right now because I know as soon as the processors go on, I am supposed to narrate everything! Kevin will be so sick of hearing my voice, but hopefully it will be worth it and he will be able to talk normally. Until then, I am 'resting' my voice!

Till next post...

6 days until activation!

I am very behind on posting! Kevin was bilaterally implanted with Cochlear Implants on January 29. We chose the Freedom processor. Dr. Roberson did an outstanding job with the surgery and we just couldn't be happier with how everything is turning out so far. Kevin will be activated in 6 days, which means that will be the first time he will able to hear. I just can't believe it!!!

When I stop to think how much has happened the last 3 months, since he was offiicially diagonsed, it just makes my head spin. I am relieved to finally be on this side of things and feel like we are moving forward. I look forward to the day when we can just lead a normal life.

I am so excited for Kevin to be able to hear and I know he will do great! Hopefully I will be better about blogging.... I know getting the word out about cochlear implants is very important and I want to do my part to educate everyone on this miracle technology!!!