Kevin's Journey into the Hearing World

daily quote

2011-05-18T23:36:00.001-07:00

Setting: Kevin is in his therapist's office finishing up the session.
Kevin: 'Lisa, what are you drinking?'
Lisa: 'It is sparkling water'
Kevin: 'Oh, sparkling water. That is soooo rare!'

:)

Kevin's quotes of the day

2011-05-16T09:49:00.000-07:00

Kevin seems to be having the greatest quotes these days, so I am going to make a concerted effort to post the quote of the day from him. I hope this will help me remember them a long time from now!

Setting: We are watching a movie and I want to make sure he can hear and understand the movie (still testing the new N5s for sound).
Me: Kevin, can you understand the words?
Kevin: Yes, mom! It's not like it is in Spanish!

A brief update on where he is right now:
Kevin turned 5 last month and received his new N5 upgrades. He loves them and I love the size of them! I can only imagine how small the processors will be in another 5 years!!! Kevin continues to do well and blow people away at his auditory and language skills. He will mainstream Kindergarten in the Fall and I have no doubt that he will do great. He is already starting to read and is very ready for Kindergarten. He is playing t-ball right now and is loving finally being able to play a sport of his own.

Happy 3rd birthday, Kevin's ears!

2010-02-21T22:26:00.000-08:00

Today is Kevin's 3rd hearing birthday. It is crazy to think that 3 years has passed already since he first heard our voices. Never in my wildest dreams would I think that he would be where he is right now. I mean, he talks non-stop, completely articulate, and has an incredible vocabulary. Our life, to any outsider, would be very normal. In most ways, it is. Kevin is almost 4, loves all things 'boy': bike riding, swimming, playing in mud, pirates, guns, star wars, monster trucks, etc. We do have our daily challenges, but what I have learned over the past 3 years is that every family has challenges. In some ways, ours might be more difficult, but this is our life as we know it, and therefore it is normal to us. Today, for instance, we all went skiing. I still find bike and ski helmets EXTREMELY frustrating to put on over a CI and not constantly knock it off! So, today, I had to keep putting the coil back on and testing if Kevin could hear me, so it was definitely more challenging than our older son who can just slide his own helmet on and hear me all the time. BUT, I could talk to Kevin all the way up the lift and down the mountain and tell him to turn, do 'pizza', and 'stop'. Even though we had more of a challenge today, our life was normal too and it never amazes me that I can communicate with Kevin on this level.

Kevin recently had a hearing in noise test done and with a signal/noise ratio of 55/60 he scored a 96%. What an amazing little boy!!!

So, if I could just invent helmets that work great for CIs, we would be all set. :)

Happy Hearing Birthday, Kevin!!!

Our lucky boy

2009-12-30T22:33:00.000-08:00

Kevin says so much on a daily basis that I would love to 'blog' about, but I just don't seem to find the time. My New Year's resolution is to capture more of his comments on this blog. I know I will love reading them in the future.
Anyway, he did say something yesterday that I thought was very blog worthy! We were in the snow and his Grandpa pulled his hat on forgetting that it would knock his CI's off. So, as he was getting him put back together, Grandpa was having a hard time finding the magnet spot to put the coil back on. He asked Kevin to just do it, and Kevin replied, 'It goes right on the magnet, Grandpa. (click) I'm so lucky I have a magnet so that it sticks to my head!'. I just thought that was priceless because he doesn't really know what is in his head or what was involved with getting the implant. He just knows he has a magnet in his head that sticks the CI on. What a lucky boy to have a magnet in his head!!!

Other fun news to keep this up to date is that Kevin performed in 3 Christmas concerts this month. He sang many songs from his mainstream preschool, We wish you a Merry Christmas from his oral-deaf school, and 2 church songs from our church. It truly is a miracle of a gift to hear your deaf child sing in a microphone his Christmas songs! He loves to sing... does it all the time. Did I mention that Santa brought him a microphone for Christmas???? :)

Halloween and Dreams

2009-11-04T06:42:00.000-08:00

I just had to share how cute Kevin was during Halloween. A few years ago I was hoping he would be able to say 'Trick or Treat' and it was more like 'tri-o-tre'. This year, Kevin literally talked to each neighbor for about 5 minutes and I had to finally say, 'Ok Kevin, say good-bye'. He was having full conversations about costumes or decorations or whatever he decided to talk about. Plus, he didn't need me to translate for him. Everyone understood what he was saying. It was so special! Our friends who went out with us asked if he was always this talkative. I had to reply.... 'Yes, ALWAYS!'!!! Hooray!

Last night, Kevin woke up and came to our room in the middle of the night. He said (without his CIs) 'The helicopter above my head in my room is too loud' and he crawled in our bed. He was dreaming in sound!!! This might not seem out of the ordinary for a hearing child, but I always wondered if he would dream in sound. He let me know 'loud and clear' last night that, yes, he does!!! I just think that is soooo cool!

Super Agent Oso

2009-10-11T22:45:00.001-07:00

Daddy is brushing his teeth this morning.
Enter Kevin bouncing in.
Kevin: (talking rapid fire fast) Daddy, I am Special Agent Oso and you have to turn off the water when you are brushing your teeth. You are wasting water and it is all going down the drain and we are going to run out. I learned this on Special Agent Oso.
Daddy: (turning off water) Thank you Special Agent Oso. I'm glad you taught me this.
Mommy: (turning head so that Kevin doesn't see her laugh hysterically as tears stream down).

Moments like this are priceless to us. This is from our child who wasn't supposed to ever utter a word, let alone hear cartoon characters teach lessons!

Who says CI kids can't appreciate music!

2009-09-29T20:55:00.001-07:00

While Kevin amazes me everyday with things he says, it has been a little while since I have been brought to tears by a 'CI Moment'. Today, it happened again. What a wonderful feeling!

We were driving on the way home from swim practice and there was a lull in our conversation. I had the Vacation Bible School cd on in the car and while it was going in one ear and out the other for me, I guess Kevin was actually listening to it. I remember thinking that I didn't get what the line was in the song and all of a sudden, Kevin sang 'You pray with your heart' in a little melody voice. I stopped and asked what he just said, and he said it again. He said that they learned that at Sunday School and he heard it on the song. Amazing....! Yes, this is truly God at work! Thank you!!! He heard the phrase in the song and actually sang it back. Truly amazing...!

Kevin got mapped a few weeks ago and I forgot to post his fabulous results from that trip. He continues to hear well in both ears, but the exciting news came from the tests that they performed. Last mapping, in March, they did the HINT-c test using voice and he scored in the mid-90s for both ears. They were floored by that. So, this time they decided to do the HINT-c test using a recorded CD and he scored 96% in each ear. Yes, you heard that correctly! He is only 3.5 years old!!! Cochlear Implants and Kevin never cease to amaze me!

I'm a happy Mom!

Good-bye Annie

2009-09-15T22:06:00.000-07:00

We just found out that Kevin's beloved audiologist is leaving for another job. Tomorrow will be Kevin's last mapping appt. with her. I am soooo sad about this! I have felt this enormous safety net under Kevin for the past 2.5 years because of his awesome team of surgeon, audi, and speech teacher. I am just a little shaken about how this will affect Kevin and how long it will take to regain the trust of a new audiologist. I guess I will have to start the interviewing process of a new audi now. At least we have 6 months until his next mapping. Good-bye Annie... you will be missed deeply! Good luck with your new endeavor!

Kevin continues to do awesome with both his hearing and talking. He is in a mixed age class (3 -5 year olds) in both his mainstream and auditory-oral preschools. It is crazy how well he is doing! My little jokester has also settled down and pays attention really well. He talks about everything he is learning and sings new songs all of the time. It is really fun to see how much he is blossoming!

Have I mentioned that Kevin is a fish? He swims so well that is blows my mind! He is only 3.5 years old and he is already taking side-breath strokes. Wouldn't it be ironic if my deaf child chooses a sport where he isn't supposed to wear his CI? Of course, I used the Aloksak bag and it works great, but still it would be ironic. I can't wait for the new Cochlear processor to test exactly how waterproof it is! :)

I also want to mention something that happened to us the other night. This was a first for me and it made me kind of sad. We were at a fun pizza place having dinner and happened to sit at a table next to 4 deaf adults. As soon as Kevin walked in, they made awful faces and started signing really fast to each other showing their disapproval of his CIs. Now, I don't know sign, so I don't know exactly what they were saying, but I can read facial and body language and they were not pleased in the slightest and not afraid to show it. They went on about his CI for about a 1/2 hour. I thought how sad that we totally ruined their dinner. I also realized that one day Kevin wouldn't be oblivious to this kind of hatred and I wonder how he will handle it. This was really the first time that I have encountered this first-hand. I wish I could have had a conversation with this about this, but I don't know sign language... I guess that is their point. Interesting dilemma...

Mainstream Preschool

2009-08-20T21:15:00.000-07:00

Well, Kevin has adjusted well to his mainstream preschool this week. He loves it and is doing so great! This is the same school as his brother went to, so I expected him to like it, but he really LOVES it! He is so proud that he gets to go to his own school now. I guess he doesn't consider his auditory-oral school a big boy school. I think he understands that this is different because he is the only CI kid here. There are only 12 kids there and so far, he is hearing and understanding what is being said. He came home singing a new song that they learned today. I was very impressed because that tells me that he is really hearing and understanding what is being said.

I gave a little presentation today to the class about cochlear implants and gave out some coloring books to the kids on CIs. They enjoyed holding a CI and trying to put it on their head. Kevin all of a sudden said, 'See, when I pull my ears off (and took his coils off) I can't hear you. (then he put them back on again) And now I can!'. It was really cute!

I am just so proud of him and how much he has accomplished. My other son started Kindergarten this week and I am already taking notes about things that will be difficult for Kevin in a large school. At least we have 2 more years to work even more on his hearing!

2009-08-11T22:56:00.000-07:00

I think I decided to take the Summer off of blogging since Kevin took the Summer off of his therapy schedule. So much to report since it has been 3 months...

IEP update: Well, the IEP process ended up being a very positive experience once we got the right people involved. Kevin will be attending the local auditory-oral school for preschool and speech twice a week and will also go to mainstream preschool twice a week. While I don't like the idea of him going to school 4 days a week at 3 years old, I am thrilled that this is what his schedule will be. My son will be mainstreaming next week! I always knew he would have the opportunity to do it, I just didn't know when it would be. 3 years old and he is already talking better than most 3 year olds. I think he will do fine in his class. We'll see next week!

He attended an art class this Summer for 1.5 hours a week and did great. I always asked the teacher if he seemed to hear him or just follow along with what the other kids were doing. The room is noisy and there are a bunch of kids in there all working on art. He told me that Kevin definitely does hear him, but doesn't always listen to him. Yes... that is the Kevin I know. He is very 3 and only 'listens' when he wants to, but he definitely hears me! I'm glad his teacher thought so as well!!!

Kevin talks in full paragraphs and processes information very well. An example of his understanding is I read him Green Eggs and Ham about 2 months ago. A couple of weeks ago, he didn't want to try some food, but I was trying to get him to try it. He finally did and said, 'Hey, I like it!' And then he said, 'Sam I am'. I almost split my seam!!! Yes, Kevin gets it just fine.

He and his brother are best friends right now. I wish I could freeze frame this point in our life. The two boys get along great, play all the time and talk to each other all the time. Sometimes I stop and think about how different our life would be if Kevin didn't wear cochlear implants. These devices have allowed our family to continue living in the hearing world and allow the boys to play together like all the other siblings I know. I would do everything again in a heartbeat!

I hope I can update more regularly!!!

Kevin talking

2009-05-03T23:21:00.000-07:00

I just thought I would share a video of Kevin talking. This is actually taken this evening of both boys just playing around the yard. One point to mention is that Kevin is just running and playing throughout the video and doesn't ever look at us. He has grown up relying on his implants as his ears and not using his eyes to lip read.
http://www.youtube.com/watch?v=2-hzwIdbj70

So much to post

2009-05-01T20:13:00.000-07:00

Wow, life has been pretty busy this past month. I have so much to post! Every time I thought about posting, it seemed like a daunting task, but alas I have some time tonight, so here it goes.

Cochlear Celebration: We went to the Cochlear Celebration at Disneyland in March. Wow! What an experience!!! I was on such a high from that trip for weeks! It was wonderful for all of us to see so many CI users, both kids and adults. Kevin and Ethan really enjoyed it too. It was the first time that I really saw that both boys realized wearing a CI was something special. The staff at Cochlear Corp are amazing. I can't say enough wonderful things about everyone we met. We had the opportunity to talk to both the CEOs of Cochear Worldwide and Cochlear Americas. A very special experience was meeting Jim Patrick, Cochlear's chief scientist. He was the first employee Graham Clark hired and he built the first CI. It brought tears to my eyes to meet him. To make it more emotional, he was very teary eyed at seeing everyone wearing a CI, especially all of the children. To see the difference he has made in so many people's life really was special to him. The parties at the hotel and Disneyland were a blast for the kids. They felt like they were treated like royalty throughout the entire experience. I am so glad we attended the event!

Kevin's 3rd birthday: Kevin turned 3 in early April. Yes, my little baby is now 3. Where did the last 3 years go? In some ways, it flew by, but in others, wow... what a journey it was. Not that it was long, but he has been through so much in 3 short years. We had a great Bolt celebration for the day with 20 of his 'closest' friends. Yes, he is a social kid!!! Ok, some of them were Ethan's friends (siblings), but it was a lot of fun!

Ethan's 5th birthday: Ethan turned 5 in mid-April. Yes, April was busy because Easter fell right between their birthdays! Ethan had a Star Wars birthday. He is a wonderful son and an incredible Big Brother for Kevin! Not only does he play with him all the time, but he is an incredible language model for Kevin. He is a very special boy.

IEP: Well, the downside to turning 3 is that it is time for an IEP. We were sad to say good-bye to our early intervention person who we have seen weekly for 2. 5 years. We miss you, Miss Amanda! For Kevin's IEP, we think the most appropriate placement for Kevin is to continue him at his Auditory-Oral school twice a week and then start mainstream preschool twice a week. We thought it wouldn't be a problem with the district. The district thought otherwise and wants to put Kevin in a County TC school, so now we have another meeting next Wed. to discuss this. I won't talk much about this now until all is signed. I will post the results from the meeting on Wednesday.

Kevin's speech: Wow!!! I can't even begin to tell you how much Kevin's speech and language has exploded!!! He now doesn't have any problems with his 's', 'f', 'h', 'k', 'g', ... really any sound! Seriously, he says it all! He talks just as good (and for many hearing kids, better) than any other hearing child. I know I might sound like I am bragging, but he is just amazing us and I am sooooo proud of my little boy. His articulation is so good too. He has great tongue control now, which really helps. What is so surprising is his language skill set. He processes information so well and carries on full conversations all the time. He comes up with his own discussion points. He says complex words like ridiculous, disaster, and actually. ('Actually, Mommy, I don't want to wear this today'). I can't help but crack up at hearing my deaf 3 year old say a sentence like that. Suffice it to say, I am blown away at the CI technology and what early implantation can do for children.

They brings me up to date for the most part. I have a lot to say on the IEP front, but that post will have to wait until next week.

Beyond any expectations!

2009-03-04T22:53:00.000-08:00

Kevin had his latest mappings yesterday and today. We still split the mappings in 2 day, one for each ear. It is so much less stressful on everyone and we seem to get better sound booth results when Kevin isn't at his wits end from sitting and testing for 3+ hours. This was his first mapping in which was 6 months from his last one. Before that, they were every 3 months. I'm very excited that neither of his maps changed very much. That means that his hearing is stabilizing and he shouldn't have very many fluctuations in the future. His audiogram was fantastic! He is hearing bascially 10-20db across the board with one frequency at 25db. Our audi warned us that they usually don't like CI kids to hear at 10db with his low frequency because it means that all sounds might be too loud for him. For instance, the hum of a computer might sound the same as someone talking. Kevin has never seemed to have a problem with this, but she turned his map 'down' to account for this. After changing his map, he still tested at 10db. I guess he just is really in tune with these sounds! The funny thing is that he tested to 10db on both sides!

Now for the really exciting news! Because Kevin is a pretty mature child and has great language skills, she decided to test his listening skills in the booth where she gives him random sentences and he needs to repeat them. She said that they usually don't think about giving this test until a child is at least 4. Kevin isn't even 3 yet. Kevin is very helpful with all testing, so she thought she would give it a try. I forget the name of this test, but the audi reads a random sentence while covering her mouth so Kevin can't lip read and Kevin needs to repeat the sentence back. With his right ear, he did this with 92% accuracy and his left ear had 98% accuracy!!! Wow!!!! What this signifies is that Kevin's auditory memory skills are incredible and that he is really listening, hearing, and confidently accepting what he thinks he hears. These sentences were completely out of context and used a pretty high vocabulary. The test used words that we don't use everyday like 'dishcloth', 'soaking', etc. Needless to say, I am pretty ecstatic right now at how well Kevin is doing. How can 2 years make such a difference in our lives? If anyone is reading this that is just starting their CI journey, please keep your faith. Your child will be fine and in a few years, I bet you won't be able to keep your kid quiet either!!!

Changing the rules?

2009-03-01T21:02:00.000-08:00

I think we are doomed... Kevin is already starting to manipulate things to go his way through conversation at the tender age of 2 years and 10 months. This is how our conversation at dinner went tonight...
Kevin: Trying to get down from the chair without eating anything... after about 40 minutes at the table. A normal night for us.
Mom: 'Kevin, you know how it goes. You can't get down until you eat a bite of chicken. That's the rule.
Kevin: 'No, I get down now. That's my rule.
Mom and Dad: trying hard not to laugh and admiring that our deaf son is telling us his own rules.
He continued to banter back and forth with Dad... ultimately we won. It was really a funny conversation, though! Maybe he'll be a lawyer...

Long update

2009-02-25T19:58:00.000-08:00

I am finding that I am taking longer to write between blogs because life is so normal these days. Yes, Kevin has a cochlear implant, but that doesn't seem first and foremost in our minds these days. Life with him is just normal. I never thought I would get to this point, but we are really enjoying it!

I do, however, have some fun updates on Kevin. Last Saturday, Feb. 21, was Kevin's 2 year hearing birthday. We marked this milestone with taking cupcakes to his oral-deaf school and having a family party on Saturday. This was such a significant day in our lives that I always want to remember it and celebrate it somehow. Where did the last 2 years go? I seems like yesterday that we were sitting in the audi's office and listening to the beeps hoping that Kevin would turn his head... and he did... and he smiled. He hasn't looked back since! Kevin is a completely auditory child!!! Happy 2nd Birthday, Kevin! I really need to upload some audio samples of him. The problem is that he gets goofy when the camera is on him and doesn't talk the way he normally does. Hopefully I will get some good footage of him soon and let you all see for yourself how great of a talker he is! :)

The one area of focus we have had is articulation. His artic is getting much better and I think that is due to 2 reasons. One, he is almost 3 and so his age and development is helping with that. The other is that his tongue strength and movement is soooooooo much better. I can't even begin to tell you how much better it is! We have been working a ton on this is therapy and I also have let him chew gum. Between those 2 thing, his movement has really increased. This seems to be helping how he is articulating.

We are also working on his IEP. That is coming up in less than a month, so we are getting all of our ducks in a row for that. I'm not anticipating many challenges with this, but you never know. All districts are cash strapped now and Kevin is the first deaf child in his district. So, he is paving the way for others... assuming there will be others. We are hoping for a 2 day a week in his oral-deaf school and 2 days in mainstream. I also would like to have him start using an FM system when he turns 3. I'll keep you updated on how this process goes. So far, it has just been a lot of paperwork and testing/observation. I'm not one to enjoy having to 'go through the process'.

2 cute stories that happened tonight that I have to share are this:
1. I was in the kitchen cooking with the fan on the stove and Kevin and his brother were in the family room about 20 ft away. My cell phone was about 10 ft. from me, so 30 ft. from Kevin. They were playing trains and making moving sounds and the fan was loud and my phone isn't that loud, but it started ringing. I didn't hear it that well. Kevin says, 'Mommy, your phone is ringing'. Why thanks, Kevin... my deaf child alerted me to my ringing phone! How cool is that!!!
2. Before we put the kids to bed, I made a fort with the couch cushions and we got underneath and turned on flashlights to tell 'spooky' stories. I went first and then my other son told a long and detailed story. I assumed that was it, but Kevin wanted to tell and story and I swear he talked for about 4-5 minutes non-stop with this detailed story. He was making up names for characters (monsters) like 'bullet-train' and 'curious george'. He told what they did and where they were going. I was so impressed that he could tell a made-up story all on his own! He never ceases to amaze me!

On another note, something did come up today. I have started taking them to the childcare at the gym. For the 2nd week in a row, Kevin has been bonked in the head by a 'friend' with a toy. Now, the child today was 2.5, so I am sure it was just a 2.5 year old thing, but on the way home I posed the question, 'Kevin, why are you getting hit in the head?' My other son said, 'maybe they are making fun of his implants'. Gulp... what did you say???? He told me that he doesn't think they are funny and no one has said anything to him, but maybe that is why they are doing that. My other son is almost 5. We have never had the conversation about Kevin's implants being 'different' or 'weird' or 'funny'. Just how great they are. Somehow, he has learned that people might poke fun at him for it. We talked about how he needed to be there for Kevin is someone did poke fun at him for them. While I am sure today's incident was simply a 2 year old asserting his power, it did make me aware that the time will come when some uneducated child will say something or do something to hurt Kevin's feelings about his implants. Hopefully Kevin will be at an age to have the confidence to soar through this, but I am dreading that day. I also never realized it might come at such a young age...

All in all, we couldn't be happier with Kevin's progress. He gets mapped next week! It will be interesting to see how much his map has changed in the past 6 months... this is the longest we have had between mappings!

cute stories

2009-01-25T20:07:00.001-08:00

I have some cute stories to share today.
I was reading the 'Voices' magazine the other day and left it on my bed. Yesterday, Kevin came running down the hallway all excited and pointed to the picture on the front and said, 'Look, Mom! She has a cochlear implant just like me!'. He was so excited to see that in a magazine and he wanted to see everyone with an implant throughout the magazine. It really made me realize that it is so important for us to have pictures of other people with an implant throughout the house. Whether it be books, magazines, or other CI friends, Kevin needs to see that there are other people having fun who wear an implant. I guess I never realized that he would take notice of something like that so young.

Also, on the drive home tonight from my parents, it was dark and we were just having a typical conversation. We must have been talking about how dark it was and how late it was and Kevin told me that, 'I wear cochlear implants and I have lights on my ears. Maybe I can help you see the road, Mommy'. He wanted to use the red blinking lights on his processors to help me see the road! He and his brother proceeded to have a conversation about why this would work and why not. My 4.5 year old, of course, was right with his argument, but I have to say that Kevin, at 2.5, gave pretty good arguments for his case. Most importantly, though, was the completely normal conversation they had as two brothers riding home in the car. This is something that at one point in my life, would never happen. It is hard to believe that in such a short time, things are basically where they would be if Kevin was born hearing...

I just had to share these stories because they put a smile on my face!

2009-01-22T07:08:00.001-08:00

It has been a while since I posted, so I thought I would give a status update on Kevin's progress.

The other night I was awaken by Kevin stirring and talking. I went to his room thinking he needed me, only to find him sound asleep. I stayed in his room to make sure he wasn't going to wake up and sure enough, he started talking again! I realized that my deaf son talks in his sleep! It isn't all gibberish, it is actually English that he is saying. I found that to be completely amazing! To me, that signifies that while he is deaf, he is functioning as a hearing child and he has assimilated to this new world we created for him beautifully. I told you he is NEVER quiet... now it is really true! He even talks in his sleep!!!

His progress is coming along really well. He has always had trouble with 's' and 'f', but he says those on the end of words almost all the time. That means that he says plurals really well. His middle 's' and 'f' is coming along nicely too. The initial ones are still really hard for him, but if I stop him and correct him, he can do it. Actually, I have started acting like I don't know what he is talking about and he self corrects himself. For instance, he'll say 'do you ee that'? I'll respond with 'hmmm, what is ee? I don't know how to ee.' He'll then smile and say, 'do you s-ee that'? So, it is coming. His blend words are easier for him, like star, stop, etc.

The exciting news is his tongue movement! He can now move his tongue all the way to the left, right, and down. He still can't raise it up, but I am assuming that will come next. We have been working a lot on oral motor therapy hoping that will correct his articulation and it seems to be working.

Artic aside, his language is amazing! He seems to have full grasp of the English language (for a 2.5 year old) and says very complex sentences. I still think that he focuses so much on what to say because he has soooo much to say and so he gets lazy with some sounds. He is making huge progress all the time, though, so I'm sure it will all fall into place soon. He took another artic test yesterday, so I am anxious to see the results. I know he made a lot of progress since his last one 6 months ago...

K sound is here!!!

2008-12-22T20:44:00.000-08:00

Yea, just in time for a great Christmas present for us, Kevin can say 'k'! He actually can say his name if he really concentrates and thinks about, otherwise it still sounds like 'Devin'. The ending 'k' sound is coming pretty easily now. He says things like 'lock', 'book', etc with complete ease. It is strange how all of a sudden, just one day he can now say 'k'. Has he been holding out on me just so I would get a nice Christmas present? :) I have noticed that his tongue is moving a lot more now. He has some oral-motor issues and we have been working on his tongue movement a lot in therapy, and I guess it is starting to pay off.

What fun that my boy can now officially say his name!!! Now for our last name.... well that will be a while! Talk about a HARD name for a deaf child!!!

new sounds and Happy Holidays!

2008-12-15T21:15:00.000-08:00

Wow, what a difference a year or two makes in someone's life! 2 years ago, we had recently found out about Kevin's deafness and were going through the CI evaluation process. I remember Dec. 23 clearly... that is when Dr. Roberson walked in the room and said Kevin had 'a date with hardware'. He meant that all checked out well with Kevin's anatomy and that his surgery would be scheduled for a few weeks later! That Christmas was filled with sorrow, anticipation, and worry about Kevin and the whole unknown.

Last year, Kevin was well on his road with his CI and was a little over 18 months old and talking like an 18 month old. We did have that bump in the road when Kevin fell in October and knocked the internal magnet out and he had to have another surgery to fix that. That was a month of unexpected drama, but a blip in the road in the long run. He was doing great, but 18 month olds still don't really 'talk' like a person yet. I felt no more sorrow, but still had anticipation about him really talking, and, of course, worry about Kevin and the whole unknown.

Ahhh, this year! This year has been pure bliss with respect to Kevin's CIs. He is now talking like a regular natural hearing 2.5 year old and won't ever be quiet! He is processing information and returning thoughtful answers to questions, not just regurgitating words. In other words, he is REALLY talking!!! It has been so much fun watching him learn new sounds and new vocabulary. So, now I don't have any sorrow, no anticipation about him talking, but of course, I still have worry because I am a Mother and I think I always will. Part of the job description of being a Mom is being able to worry for your children because they shouldn't be burdened with that.

On to the new sound... Kevin can finally say 'G'. He says it very good at the end of words (pig, dog, hug) but just today started a word with a G sound. He said 'goat'. Up until now it was 'doat', but now he has 'goat'! Yea!!!! Now, the only sound that he hasn't really mastered is 'k'. Ironically, his name starts with that, but it will make it that much sweeter when he finally gets it! He can say it in isolation, just not in words yet.

I know that many more fun times await us in the next year!
Happy Holidays!!!

My real name

2008-11-19T15:34:00.001-08:00

Kevin has called me Mommy for about a year now. I would expect him to call me this (or at least, Mom) for the rest of my life. Yesterday, he was taking a shower with his Dad and wanted to get my attention and said, "Kristen, please get me my boat". I thought I was going to split a seam! I didn't even know he knew my real name, and he said it without even being able to hear (in the shower)! He has said it various times today, and I know it is a phase and he is testing out the sound of my real name, but I think it is one of the funniest things I have heard him say.

Kevin has quite the personality! He already is starting to crack his own jokes. His favorite is when we are all sitting around the dinner table and he says something that he knows is a joke (for a 2 year old) and gets this big grin on his face. Watch out teachers.... he will keep you on your toes!!!

Happy Birthday Mommy

2008-11-11T21:45:00.000-08:00

My birthday was last weekend and I captured the boys singing Happy Birthday to me. I love how Kevin is just a few seconds delayed in singing, but it also shows what a great language model his older brother is! Enjoy...

You're not listening!

2008-11-03T21:45:00.001-08:00

Today I realized that Kevin has been listening to me all along, even when I don't think he is. I think all of his training, both formal speech therapy and informal family training, has paid off with Kevin's ability to really listen. Remember, listening is very different than hearing. We all know that we can hear something, but not really listen it, and therefore not process it. When we are in noisy situations, I often tell Kevin to 'listen to me' or 'you're not listening' if that is what is going on. I guess I have said that enough to Kevin. Today, we were playing play-doh and I was zoning and staring off in space thinking of all the things I had to get done that day, and Kevin said something to me about looking at his sculpture. The next thing I heard was, 'Mom, you're not listening'. I had to try hard not to laugh because the way he said it was just like I say it! I guess we all just hear sometimes, deaf or hearing, but don't listen!

On a side note, one of Kevin's new words that he picked up incidentally is weird. I was telling him that his old therapist was going to be a party and he said, 'that's weird'. He had the right context and everything! It's so nice to hear him really start to use incidental language like that!

auditory memory

2008-10-15T20:53:00.000-07:00

I feel that Kevin has had a huge bump in his language the past few weeks! I am sure it directly correlates to his last mapping, but it is so much fun to hear him talk up a storm using proper grammer, syntax, and clear(er) articulation! Something very exciting happened today, though, that brought tears to my eyes! This was one of those true 'CI moments' for me, as a Mom.

Kevin was in music class this morning and, as usual, was walking around the room rather than sitting in my lap. The teacher was talking about auditory memory and she wanted to show us this through the use of singing 'Itsy Bitsy Spider'. She would have us sing a phrase and then hold her hands to her mouth during the next phrase instead of singing it so that the kids would hear the song in the head rather than hear us singing it. I wasn't sure how much Kevin was paying attention because at that time he was more focused on things in the room rather than the teacher, but when she put her hands to her mouth, Kevin waited for the next phrase and then filled in the blank for her! For instance, we would sing, 'The Itsy Bitsy Spider' and Kevin would conclude with 'Ran up the water spout' once he realized no one was singing it. His auditory memory seems to be great! Also, I was impressed with how much he was paying attention without seeming like he was. It was great, my little boy who is deaf was helping fill in the blanks to the song!

He also did a very good rendition of 'Wheels on the bus' tonight. At his school, they were singing the verse about the baby crying and saying 'wah, wah, wah' to work on 'w' sound. He perfected it in his song tonight and actually said the entire verse perfectly clear.

I know that their language comes in peaks and then levels off and then peaks and levels off.... and we are really enjoying this climbing to a peak. I feel like Kevin is on his way to a completely different level right now!

Swtiching to BTEs? Maybe not now...

2008-10-03T21:07:00.000-07:00

So, the skelaton earmolds arrived in the mail and I was anxious to try them out with the BTE setup. I just used the earmolds (not the wigtape) with his BTEs and they stayed on 'OK'. I feel like they flop off easier then when I use the babyworn setup and a huggie. It was a little discouraging because I don't seem to have any problems with the babyworn set-up. Maybe I'll go back to having my Mom sew pockets on his undershirts for the Fall and Winter and revisit the BTE in the Spring. It is so easy to just have a small earpiece on his head, so maybe I'll keep to that for a while. I just thought it would be nice to have him hear while being naked and not have to rely on special shirts. He is potty trained now, so I don't want him in a onesie... maybe a regular undershirt will work ok.
Kevin, however, LOVED the new earmolds! He wanted to take them to bed because he felt like he got a new toy. He was so sad when we told him he couldn't sleep with them. I wasn't expecting that reaction!!!

His speech is getting better and better each day! His language is just amazing, and the clarity is getting improving. He hit his head and said 'ouch' just as I would. I looked at my husband with eyes of disbelief and he smiled (thinking I was amazed he hit his head) and then it dawned on him how well he said 'ouch'. Yes... we will never take speech for granted with him!

latest mapping

2008-09-29T20:56:00.000-07:00

Kevin had his latest mapping appointments last Wednesday and Thursday. We split the appointment up into 2 days (one day for each ear) just to make it easier on Kevin. Sitting still for 3 hours and concentrating the entire time just doesn't do it for him! It works out so much nicer to only map one ear each day. He did awesome! He was consistently hearing across the board between 15-20db on each ear. The higher frequencies jumped to 25db, but with the new mapping, hopefully those will go down too. We didn't do a hearing test with both ears due to my wiggly boy, but we can assume it would be better than the individual ear tests. The great news is that Kevin's ears have stabilized enough to have the next mapping session 6 months out. We have been going every 3 months, but now we can start going every 6 months. I feel like Kevin is getting to be one of those 'older kids' that I always looked to when we went to the implant center. I used to be the parent with confusion on my face, fear in my eyes, and a little baby struggling to keep his implants on. Now, Kevin walks in the office like he owns it, talks non-stop to the audi and the staff there, and I feel so much more at peace with everything. I love being on this side of things! If anyone is reading this blog who is just starting their journey.... you will be at this place before you know it! Trust me!!!

Anyway, Kevin continues to do great! He said a 10 word sentence tonight. 'Teacher stop reading her book, so we go in class now?' He was referring to his gymnastics teacher who was reading a paper before his class started. He said this immediately after she put the paper down. Nothing gets by this kid anymore!!!

Baseball

2008-09-12T22:20:00.000-07:00

Tonight, Kevin said baseball! He has been omitting his initial and mid-word 's' sound for a while, and we have been working with him on saying them. He can get them if he really works at it. For some reason, the ending 's' sound comes much more naturally to him. He is even saying some plurals.

Well, tonight he was looking at a baseball and he kept calling it a bay-ball. I worked with him to get him to say bay-s-ball and finally he was able to say baseball so perfectly well! It flows off of his tongue very naturally now! Hooray! Maybe this will be a start of the 's' sounds...! Let's hope every 's' word doesn't take as much work... but at least he is starting to say them!

It is very fun conversing with him now. I understand him most of the time and he is a little chatterbox! He has a lot to say and he uses full sentences to speak. He is turning into a big boy right in front of me!

banana

2008-09-08T21:20:00.001-07:00

I haven't posted in a while, but things are going well these days. Each day, Kevin's clarity seems to be improving. He has started some patterns of omitting initial or final sounds, but even that is getting better. Today, we were looking at a book and he saw a picture of a banana and said the word as clear as day! He didn't say 'nana' or 'bana' or anything else he was previously saying, he said 'BANANA'. I made him repeat it about 10 times! To me, this means that his tongue is really starting to work in his mouth. I am very encouraged by this.

Now, if we can only get those 's' sounds when he talks in sentences!!! That will be our next breakthrough..... :)

Talking in bed

2008-08-19T21:13:00.000-07:00

I used to comment that my older son (hearing) learned to talk in his crib. He would stay up for a long time just talking and 'reading' to himself after we put him to bed. That is where he would try out different expressions and words. Kevin never did that. I figured that he just thought bedtime was silent time.

Today, however, he figured out that bedtime is a time for talking too! Remember, Kevin can't hear while in his bed, but he has decided to take up talking himself to sleep too. We always leave a few books in his crib and today, while trying to take a nap, I heard him 'reading' Go Dogs Go. He would say, 'Big Dog, Little dog, Go Dog Go, etc'. It was really cute!

I don't know if his auditory memory is getting better or he has just decided to talk to himself in his crib, but either way it is fun to hear. I figure, the more he talks, the more practice he gets, and the better his language skills will be. (not that he needs to talk any more than he already does.....! He is NEVER quiet!)

Anyway, I just had to share how fun it is to hear your deaf child read to himself in bed!

Kevin can hear while swimming!

2008-08-06T20:58:00.001-07:00

Kevin swam with his ears on for the first time today! We 'waterproofed' them using the Aloksak bag and a lycra swim cap. Kevin hasn't been interested in using this technique for a while, but I just bought a lycra swim cap today and thought I would give it another try. He initially didn't want it on, but his brother tried on the whole get-up first. Kevin decided that it wasn't so bad and he liked it! He actually heard while swimming!!! I was sooooo excited!

I sang 'motorboat, motorboat' and 'Sally the camel' and played 'marco polo' with him. I never thought I would be able to communicate with him like this while he was swimming. This has now opened up so many doors for Kevin in regards to water activity. It will make our trips to water parks more enjoyable, going to the beach (lake, ocean, etc) easier, and of course, swimming much more fun! Not to mention how much easier his swim lessons will be!!!

I guess I should really enjoy this because I know there will be a time when he doesn't want to look different from everyone else. Being that he is only 2, he doesn't really care right now. Hopefully, by the time he does care, hearing in the water will outweigh his self consciousness about his look.

I don't think I have been this happy about anything related to his cochlear implant since he was activated. This was a breakthrough day!!!

'K' is for Kevin

2008-08-05T21:42:00.000-07:00

Well, as luck would have it, we ended up naming our son a hard name for a deaf child. Kevin can't say the sound 'k'. He can't get that back of the throat hard consonant. We should have named him 'Bobby' or something like that which he can say perfectly! Anyway, today, he said the sound 'k' makes. We wasn't able to use it with a word yet, but he could say 'kuh' 'Dedin' for Kevin. (He doesn't put the 'v' in there either, but can say that in isolation too...). Anyway, I was jumping off my chair when he actually said the hard consonant 'k'. Hopefully it will be a matter of time before he can say his name!!!

The oral-motor therapy seems to be working well. His tongue movement is much stronger than it was a few months ago. I am also noticing a big leap in his articulation. This may be just due to his developmental age, but I think the oral-motor therapy is helping.

Hooray for the letter K!

cute expressions

2008-07-30T20:47:00.001-07:00

Kevin has started saying some cute expressions, which just puts smiles on my face all day long! He really sounds like an ordinary little kid these days! One of his favorite new words is 'maybe'. I ask a question and he answers, 'Maybe....'. For instance, I ask 'where is Grandma and Grandpa'. He answers, 'maybe they went on an airplane'. or 'maybe they at home'. or 'Maybe they come here'. You get the idea. He says it with this cute little inflection and I just it so sweet!

Another one it 'Oh my goodness'. He sees something out of the ordinary and starts running around saying 'Oh my goodness, oh my goodness'. He almost shouts this one because he is so excited!

The last one is 'all right'. When he doesn't want to do something and he finally 'agrees', he says 'All right' with a little sigh. I know he gets all of these from either his brother or me, and maybe that is why I find them so funny, but I just love hearing him start to say normal everyday expressions. These weren't 'taught' expressions, but rather just ones that he picked up in ordinary conversation. I don't think I will ever NOT be amazed by the way he talks!!!

WALL-E

2008-07-20T19:31:00.000-07:00

Kevin saw his first movie today! We took him and his older brother to see WALL-E. He actually managed to sit through the entire movie (while wiggling on my husband's lap) and seemed to enjoy it. He tried to repeat the sounds of all the robots, which I found quite amusing. It was a good thing the theater was pretty empty, because otherwise the people might have been annoyed with him. I, of course, found it amazing that he could make the robotic squiggle voice (I have no idea how to describe it, but if you have seen the movie, then you know what I am talking about.)

Other than that, things are just progressing along here. Kevin has really enjoyed school these past few weeks, which is a huge relief! I am still in his classroom, but he does so well when I am in there that I have no desire to leave and make him all upset again. He is such a good listener and follows the teacher's directions really well. I am quite amazed at how much he does at just 2 years old. I hope this is setting the stage for a good academic career!

7 word sentence

2008-07-11T21:00:00.000-07:00

Things have really seemed to 'click' with Kevin this week. His pronounciation is improving and he is creating more sentences without prompting. Yesterday, he told me a 7 word sentence! 'I get Ethan a blue M&M too.' I feel his speech is really starting to improve and just in the last few days too!

He also decided to do some potty training this week all on his own.... hence the m&m's!!! My little boy is growing up!

A Good Day

2008-07-08T15:21:00.001-07:00

Ahhh, the power of prayer! At least, I'll think that is what saved me today.

Kevin has been quite a stinker about putting his processors on after they are off (when he wakes up in the am, after nap, after swimming, etc) If they are on and it falls off, he replaces it right away, but if they are taken off, then he won't put them on. It is a real struggle for me! I have ignored him, bribed him, punished him, but nothing works. When HE finally decides it is time, they go on without any struggle and all is fine. Unfortunately, his time schedule isn't always the same as mine and that is where the issues come in. I am confident this is a 2 year old issue and he is just trying to exert his control, but it drives me bonkers!

So, this morning, we had to head out to his first day of summer school at his deaf school. The last few days of his school, he decided he hated it and cried the whole time. I was hoping a month off would change things. So, after really struggling with his processors, they were finally on and he was happy. Then I told him we had to go to school, and he lost it. He cried frantically! My husband and I straight-jacketed him in the carseat with him still wailing. After about 15 minutes of crying and me trying to reason with him, I just lost it! While driving, I looked up and just prayed to God that I needed a break and please give me the strength to deal with this. WHY, why, why????? I didn't know what else I could do!

So, he calmed down, clung to me for the first 5 minutes, and then realized that this school was FUN! He joined in, played with other kids, participated in everything, behaved during therapy, everything I could have hoped for. (or prayed for). Something just clicked! Maybe God heard my prayers. We'll see what tomorrow brings, but for now, I feel like we are headed uphill again instead of spiraling down at a fast rate!

Ahhh, the fun we have with toddlers!

Wisconsin study

2008-07-01T21:05:00.001-07:00

We came back last week from the Wisconsin study for bilateral CI toddlers. It was really interesting to have Kevin participate in the study. They are comparing bilateral children to single CI children in 2 areas. The first test was to see how well the child can detect directional hearing. Kevin sat in a soundbooth with multiple speakers arched in front of him. He was supposed to look at the speaker that the sound came from. Only 2 words were ever spoken, so after time, Kevin 'habituated' and became bored with the test. They repeated this test numerous times throughout the 2 days... needless to say, Kevin became very tired of this test!
The second test was to see how well a bilateral child can understand sound with background noise. Kevin watched a movie and eventually they started to add background sound while having Kevin point to the object they said. This test interested Kevin much more than the other one!

I was very pleased with how well Kevin did with these tests. It was also nice to see Madison, WI. The weather was great and we got to explore the city. Overall, it was a very good experience for all of us!

Off to Wisconsin

2008-06-23T20:49:00.000-07:00

Well, we are off to Wisconsin tomorrow to take part in a study for children who received bilateral implants at a young age. I am excited that Kevin is going to be a part of this study. I will help out in any way I can to show the benefits of receiving bilateral implants at a young age. I'm really excited about this trip... I just hope that Kevin cooperates during it. It is a long trip for a short amount of time, but it will be exciting, none-the-less.

I'll update when I get back and will tell you all about the study. I don't know too much about it right now.

Go Dog Go and O'Tootles

2008-06-19T19:28:00.001-07:00

Kevin continues to talk and talk and talk! He just loves the fact that he can say so much! The other day, my husband and I were talking about the books that we read Kevin versus the ones that we read our other (hearing) son at the same age. Our other son was very advanced verbally for his age, so the books he enjoyed were more advanced. Kevin still reads mainly simple 'board' books, but the length of the books are increasing. He loves 'Mr. Brown can Moo', 'There's a wocket in my pocket', and 'ABC book'. (He is almost 27 months) So, I decided to read him one of my other son's favorites when he was 2 years old, 'Go Dogs Go'. This is somewhat simple book, but lengthy. Kevin loved it wanted to read it again! I was so excited because up until recently, he could hardly sit still for a book and how he wants to read long ones! He seemed to understand the book too! I was very encouraged by this!

Today, my kids were watching Mickey Mouse Clubhouse on tv. I was in the other room and I heard Mickey tell the kids to say 'O'Tootles' and then I heard Kevin yell 'O'Tootles'! I got such a kick out of him getting so into the tv. This is one show that really seems to capture his attention. It is nice to know that he hears and understands what the tv says! Yes, life is pretty normal for us right now!!! I couldn't be happier! :)

2008-06-13T20:17:00.000-07:00

Kevin had his mapping appts last Wednesday and Thursday. We split his mapping into 2 days now because he just has a hard time sitting still for all the tests for 3 hours. I love having the appointments on 2 days. It was soooo much less stressful on everyone. It also allowed Kevin to perform like a star because he wasn't so exhausted. You know how some days your kids just make you soooo proud? Well, these were 2 of those days. Kevin performed beautifully during the sound booth tests and dropped the ball in the basket when he heard the 'birdy'. He also said 'birdy' when he heard the sound. He was so reliable! This was the first time we got accurate individual ear tests. I was amazed at the results! He is hearing about 15-20db across the board for the left and 20-25db across the board on the right. With both ears he hears better than that! So, we are able now to start really fine tuning each ear to give him his optimal hearing. This is such an exciting time for him. He is just really starting to blossom and talks constantly! Actually, that was one of the hardest parts of the test. He can't stop talking for a minute and he needs to be silent during the test. It was quite amusing trying to keep him quiet so we could test his hearing. He was born to talk!!!

4 word sentences are now becoming the norm for him. The night of his mapping, I was laying in bed across from his crib trying to get him to sleep (we were staying out of town for the mapping, so I was in the same room as him). He knew I was there and looked up and said 'more juice please, Mommy'. He didn't even have his ears on at the time. As adorable and amazing as that was, I had to still say no. :)

As I was sitting with him in the sound booth trying to keep his attention so that he would do the test I was thinking how hard these kids really do have to work. I mean, how many 2 year olds are expected to sit still, be quiet, and drop a ball when they hear a sound. I know he has been doing these tests all of his life, but it still amazes me that he cooperates so much. I can see why many hearing impaired kids do so well in school. They have been 'trained' to sit still when you need them to!

Kevin's first song

2008-06-04T20:48:00.000-07:00

Kevin learned how to sing 'Happy Birthday' yesterday at his deaf school. He had a bad day there and I didn't think he was getting anything out of the day, but I guess I was wrong! Today, he brought out the microphone and started belting out 'Happy Birthday'. I couldn't get enough of it!!! It wasn't anyone's birthday in our house, but it is still fun for him to sing! This is his first song that he has ever really sung!!! Enjoy!

Some things to take notice of are: 1. his clarity is getting much better, 2. He actually gets some intonation in his singing 3. when Dad prompts him in the background, Kevin is doing something else, but still hears it and responds.

For some reason, I can't seem to upload a video to my blog, so you will have to click to youtube to view it. Sorry...

http://www.youtube.com/watch?v=xIbjTmzkXzc

Hawaii

2008-06-02T15:01:00.001-07:00

We were in Hawaii last week and the boys had a great time! This was the first time that Kevin really liked swimming and going on the beach. Maybe some of his sensory issues are lessening? He never liked different textures on his feet before, but this time he didn't seem to care about the sand. I was really happy that he liked swimming so much because we spend a lot of time in the pool during the Summer. I didn't try the Food Saver idea for water proofing the ears because I didn't want to lug it all the way there, but will definitely try that this Summer.

Kevin's language seems to be increasing daily. His clarity is getting better and better too. Yesterday he came up with a 4 word sentence that we all understood. 'Get my shoes off'. He wanted them off in the car and so he said that.

As a funny story, he learned a new word in Hawaii. We have been trying for a long time to get his 'p' sound to not sound like 'b'. He has been getting better at it, but he mastered it in Hawaii. I guess I have been teaching him the wrong words! Somehow he learned the word 'nipple'. He came running out of a room and pointed to his nipples and said 'nipple' clear as day! (I think his brother taught him that). Anyway, I guess he can say the 'p' sound. He then pointed to everyone's nipples and said it. He was very proud!!! :)

He also says 'open' very clear now. That was a word we have been working on FOREVER! He used to say 'oden', then it went to 'opesh', and now finally we have 'open'!!! It is amazing how mastering a single word can seem like such a victory!!!

Sprinkler fun

2008-05-18T22:05:00.000-07:00

It has been sooo incredibly hot here this week that we have been having quite a bit of water fun. Last year, the CIs were still new to me and I was paranoid about getting any amount of water on them. This year, I have learned to mellow out a bit. I just don't have the capacity to be nervous over every little thing! So, I am letting Kevin play with squirt bottles, hoses, and yes, even run through the sprinklers. He has enjoyed it and I love the fact that he can hear while getting in a water fight with his brother. The ears never get drenched, but they do get misted. I faithfully put them in the dry-and-store at night, but I just not stressing about it. According to the marketing material from Cochlear, the kids can 'run through the sprinklers', so that is exactly what I am letting Kevin do! So far, so good, and most important... Kevin is having a blast!

'ing'

2008-05-13T21:18:00.000-07:00

Kevin started to say 'ing' at the end of words today. I was really excited because it means that he is really hearing the ending of words. For example, we were working on saying 'sliding' and 'swinging' and he actually said the 'ing'.

Our therapy sessions are getting increasingly more difficult as he is getting more and more '2', but we still seem to be making progress, so I can't be too concerned about it. Everyone assures me that he is very typical, but his strong-will personality doesn't make doing 'therapy' for 45 minutes easy. Just when I think he isn't getting anything out of a session, he goes and says 'ing'. Go figure!!!

Happy Mother's Day!

2008-05-11T20:10:00.000-07:00

Happy Mother's Day to everyone! This video should say it all as to what type of Mother's Day I had. What a wonderful day!!! By the way, you will notice that Kevin says 'Happy Mommy's Day' instead of Happy Mother's Day. We didn't tell him to say that, he just created that on his own.

ooop....wrong ear!

2008-05-09T14:25:00.000-07:00

Well, this really fascinates me! Kevin is now putting his ear on by himself 100% of the time. (Just the coil, not the ear piece). Because Kevin received his implant in Feb 2007, they did not yet have the id chip installed that will lock the processor if it is put on the wrong ear. I was always afraid of what would happen if he put the coil on the wrong ear. Would he be in pain, would he cry, what would happen? Well, this morning, he took one of his 'ears' and put it on his head. He looked at me, smiled and said, 'other ear', and put it on the correct ear. Wow! First off, I am so thankful that he didn't cry! Second, I guess it didn't cause him any pain. And finally, how in the world did he even know that the coil belonged on the other ear????? That just amazes me! There must be some kind of natural intuition that made him realize he needed to switch ears. I wish I could ask him what it sounds like. I can't wait for that explanation!!!

Boys will be boys

2008-05-08T21:35:00.000-07:00

I just have to share how cute Kevin was in music class today. He really LOVES his music class and he was dancing around and singing with his new friend. There was a song that everyone was in a circle singing and the next thing I saw was Kevin, his friend, and 2 other boys sitting in their own circle just playing and singing to the music. It was so cute to see Kevin join in this music group and be so happy there. He is just a happy little boy enjoying all the things that a little boy should!

a normal life

2008-05-06T15:31:00.001-07:00

Kevin is at a point where little accomplishments happen daily it seems. It is so fun to see him becoming a little kid. Things are somewhat normal for us now. After living with a deaf baby for 2 years, I don't remember well what my old 'normal' was, but with the whirlwind and chaotic life of the past two years, I think I can safely say that things are normal again. Yesterday, Kevin ran out of his room and said, 'Ethan, where are you?" (more like ee-an, where-r-ooooo?), but he said it and all 3 of us understood him! Ethan, told him where he was and Kevin ran there. They then proceeded to have a little conversation (mainly Ethan talking and Kevin saying 'yes' a lot) but it was happening. It seemed like such a normal sibling interaction. Can this possibly be happening???

This morning, the boys were watching tv while I was getting ready and Kevin was singing very loudly near Ethan's ear. Ethan said, 'not so loud Kevin' and the next thing I knew, Kevin was singing softly. The communication is really there!!!

Another 'normal' experience happened today on the way to his preschool. We listen obsessively to the Music Together CD in the car because both boys like it so much. I knew Ethan loved it and knew all the songs by heart, but I didn't exactly know how much Kevin got it. Well, I was driving and the last song came on that says 'good-bye everyone'. Kevin immediately said, 'uh-oh, bye-bye'. When I asked him if he wanted me to play it again, he said, 'hello', meaning he wanted the hello song which is the first one.

All of these experiences are normal interactions with a toddler! I can't believe it! I really hoped we would get to this point, but to finally get here is amazing. Now, I am not kidding myself. We still have a long way to go with full comprehension and speaking, but hey, this is a first step!

The crazy thing is that while I seem to try to do 'therapy' all day with Kevin and his progress is going well, I still find myself questioning if I am doing enough. I think that is something that all parents of CI kids feel. Can I be doing more? I don't ever want to regret that because I was lazy or tired, he didn't progress as quickly as he could have. I know that parents are only human and have to take a breath once in a while too, but until he has truly mastered the language, I think I will feel this way.

Oh well, for now I will enjoy this bit of encouragement that the boys seems to have quite a normal relationship!

A natural therapist

2008-04-25T15:13:00.000-07:00

I think I have crossed the line into the world of forever being a speech therapist! Yesterday, I was watching my friend's kids for a while and Kevin was still sleeping and my older son was out. So, it was just me and a 4 and 2 year old who aren't my own. We were playing with toys and the 4 year old was pushing a car up a ramp and I instinctively said, 'up, up, up' with the correct intonation. They just kind of looked at me like I was a very bizarre person. I realized that I was doing this with everything they did. The 2 year old picked up an animal and I instinctively said the name, asked what sound it made, and talked obsessively about it. I think it is so ingrained in me that I will forever be like this. It is kind of crazy how easy it is now to just talk about everything and I can't just say 'up', I have to say, 'up, up, up' raising my voice each time. CIs haven't just changed Kevin's world, they have changed mine as well!!! It was a pretty amusing realization yesterday!

Preschool and Wisconsin

2008-04-22T15:17:00.000-07:00

Kevin is growing up! Today he moved from his 'baby and me' class at his oral-deaf school into the preschool classroom. He probably should have done this a while ago, but I have been hesitant to have him be with the 'big' kids. Well, he is now one of those big kids. He fit right in and did great! I stayed in the room today and will slowly leave him over the next few weeks. He doesn't like being too far from me and so I think this might be a gradual process. We only go to the school once a week, so he isn't there all the time to really get comfortable with it. I was so proud of Kevin of how well he did today! I think he is really going to excel in this class!

We also got confirmation that Kevin is going to Madison, Wisconsin for a CI study. I know a lot of kids from the CICircle have attended this research project and I am happy that Kevin is going to be able to participate. I want him to help with CI research as much as possible to help further the technology and help other children benefit from CIs. I am so thankful that he has the opportunity to do this. We don't leave until June, but I think it will be a fun trip.

amazing words!

2008-04-16T20:46:00.000-07:00

Kevin brought tears of joy to my eyes twice today! Maybe I am just emotional because it is my other son's 4th birthday tomorrow (and I feel like he is getting to be such a big boy!), but Kevin's articulation just amazed me today. We were at the haircut place getting my son's haircut and they give lollypops to the kids. Kevin picked his out of the lollypop tree, walked up to me and said 'lollypah'. I asked him to repeat it and he said it exactly the same 'lollypah'. I have never heard an 'L' sound from him before, but he concentrated on it and you could tell he was trying so hard to make it. His tongue was sticking out between his teeth as he said it. My eyes welled up right then and there. I had no idea he knew how to make that sound!!!

Then, to top it off, later today, we were going for a walk with the boys in the wagon. We pretended it was a train and I said 'all aboard' just like a conductor says it. My older son mimicked me and then Kevin said it completely clearly, 'All Aboard'. I asked him to repeat it many times because it was sooooo clear, and those sounds and syllables just rolled off of his tongue. What a fun day!

Now I have to go get ready for the big birthday boys day tomorrow!!!

I've been tagged

2008-04-16T14:32:00.000-07:00

I got tagged! Here's the rules:

1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.

What was I doing 10 years ago?
Working as a consultant at Accenture (was Andersen Consulting at the time)

Five snacks I enjoy:
1. yogurt
2. granola bars
3. ice cream
4. cookies
5. fruit salad

Things I would do if I were a billionaire:
1. Buy a couple of vacation homes and have someone be able to maintain them
2. Start a foundation to help people receive cochlear implants

Five jobs that I have had:
1. Stay-at-home mom (my favorite!!!)
2. Director of Center for Internet research at Purdue University
3. Sales Engineer, Aligo (small start-up)
4. Director of Western States Sales Engineers at Net Perceptions
5. Consultant, Andersen Consulting

Three of my habits:
1. Dancing around the house
2. Singing out of tune
3. Being outside for any activity I can find (I would rather be outside anyday...)

Five place I have lived:
I actually was born and raised in the same house. All of my moving took place after college. Yes, I HATE moving!
1. Rocklin, CA
2. San Francisco, CA
3. West Lafayette, IN
4. Minneapolis, MN
5. Boston, MA

Add one new part (I am copying the question from Landon's Mom who copied it from Leah who copied it from Tina who copied it from Abbie):What do you want others to get from your blog?:
I want others to see the true progress of a child born with a profound hearing loss who received cochlear implants at a young age. This includes the ups and downs. I also want Kevin to be able to read this when he is older to understand everything he has accomplished with his language development! The last thing I want this blog to do is to give newly diagnosed children's parents hope. Being deaf doesn't mean their child can't live a very happy and 'normal' life and be a productive member of society in the hearing world.

I think just about everyone in 'my' CI circle has been tagged. If you haven't been, then consider yourself tagged by me! :)

plurals

2008-04-13T14:47:00.000-07:00

Kevin is starting to add 's' to the end of words. I can't believe I can actually hear and understand it, but he is starting to do it! Today, before naptime he wanted to read the book 'Doggies'. He usually just calls it 'doggie', but he actually said 'doggies'. Wow! I was blown away. He also said the 's' on another word, but I forget which one it was. What is more exciting is that I can understand the entire word, not just the first part of it. This tells me that his clarity is getting better and better!

Also, he is now putting his coil on his head about 80% of the time by himself. He is especially good at it when he has toupe tape on the processor, because that holds the processor to his ear. If there isn't tape on that part, then it usually comes off of his ear and he can't put the processor on by himself yet. But, if it stays on his ear, then he can slap that coil on and resume his activities! It is so cute to see him stop, put the ear on, and then go on playing like nothing happened. It is just the way of life with him and he doesn't seem bothered by it at all!

I am really enjoying these small milestones. I took the fact that my other son would talk for granted and never paused for a minute when he had these milestones (like adding an 's' to make a plural), but I will NEVER take for granted what Kevin can do. I also am trying to not take for granted anything with my other son anymore. I realize that hearing or not, it is God's miracle that any of us can talk and communicate like we do!

All playing together

2008-04-11T20:16:00.000-07:00

My sister-in-law and Nephew are visiting this week and they haven't seen Kevin since New Years. I know that Kevin has progressed a lot in his language since then, but it has been fun seeing the reaction of them to his language. They are blown away! My Nephew is the same age as my other son, 4 years old. They have played together the entire visit and talked to each other. If Kevin says something incorrectly, my nephew gently corrects him and Kevin tries the correct way of pronouncing a word. It is really cute to witness. But, I think the best part is that despite Kevin being 2 years younger and deaf, he is not left out at all! He is right in the middle of all the action and many times takes charge and commands people to follow him. His favorite phrase is 'Kevin Do'. I think this take-charge and can-do attitude will help him overcome any obstacles that he faces. So far, his hearing loss isn't affecting him at all!

Another breakthrough

2008-04-09T00:00:00.000-07:00

I forgot to mention another breakthrough that happened today. We were driving to Kevin's oral-deaf school and for some reason the batteries didn't charge correctly the night before. I already replaced one of them and consequently, was running late. On the way to school, Kevin said 'ear off'. I turned around and noticed that the light was blinking, but the coil was still on his head. I told him that I would fix it when we get to school and just to hang tight. He put his ear up to the coil, realized that it was still on his head and said, 'battery' (more like 'batt-y'). He knew he needed a new battery. Very exciting! He has been replacing the coil more and more when it falls off now, so I think since he realized it was still on his head, there had to be a broken battery in it. Also, since I just replaced one of them, he knew that was what was wrong. I was excited about the language he used and the correlation of events he put together. He is growing up more and more everyday!!!

Push and Mommy

2008-04-08T14:52:00.000-07:00

2 new exciting words recently! First of all, I now have a new name. I am no longer 'mama' and am now officially 'Mommy'. I LOVE it!!! Of course, I was thrilled when Kevin started calling me 'mama'. I couldn't have been happier! But, I never really thought of me as a mama type. I always wanted to be 'Mommy'. But, I let Kevin decide and he seemed content to call me 'mama'. Well, as of a couple of days ago, I am offically 'Mommy'. I love the way he says it!!! He can finally say my 'official' name! :)

Another breakthrough was today at therapy. We have started doing more oral-motor therapy because he has the tendency to not move his mouth much when he talks. His 'b' and 'p' sounds at the beginning of words (big, pull, etc) sound like 'd' because he doesn't close his lips when he says them. Therefore, he has a lot of 'di, da, dah' words that all mean something different. He can say the sound in isolation and in the middle of a word (purple, apple), but gets lazy about the beginning of the word. Well, today we worked on 'p' and he finally said 'push'! Push!!! Wow! I was so thrilled!!! We are supposed to pick a letter of the week and work on that, so this week is all about 'p'. I think I will serve pears, peas, pizza, and other fun 'p' letters for dinner this week!

We're on a roll!!!

A child's perspective

2008-04-07T21:25:00.001-07:00

I had an interesting conversation with my older (hearing) son tonight. He is almost 4 and very mature for his age both developmentally and linguistically. (I mention that because I think it adds emphasis to his comments). We were talking about something he heard that was loud and I said that he has sensitive ears. (He really does and I swear he makes up for Kevin's lack of hearing by how good his ears are.) He hears me say that he has sensitive ears often. He told me that is why he didn't need to wear implants. I told him that Kevin needed to wear them because his ears 'were born broken'. He then told me that he used to wear them and now he doesn't need to. I'm not sure if he really thought he used to wear them or was just testing or what, but I proceeded to tell him that he never wore them because his ears were born just fine. He then asked me when Kevin could take them off and his ears would be fine. I realized that by telling him his ears were broken, he thought this was like a cast and would 'fix' them. I explained to him that he would always need his implants to hear. We haven't talked at length with our son about deafness, partially because I thought it was too much of an abstract idea for a little kid to comprehend and partially because he had such a hard time dealing with everything when we were all going to the process of diagnosis, surgery, activation, etc. I think it is time to be more open with him and talk more freely about it. It was just a very interesting to me that he thought these were temporary. Wouldn't that be wonderful!?!?!??!

On another note, Kevin is really comprehending well these days. We took our son up skiing last weekend and Kevin hates the snow, so he stayed behind. When I got back, I asked him about the snow and where we find it and he told me 'at Lake Tahoe' in a very clear response. He stunned all of us!

2 years old!

2008-04-06T22:23:00.000-07:00

My little baby is 2 years old today. It is hard to believe that he is already 2. He seems like such a little boy now. 2 years ago today, my husband and I were ignorant of the deaf world. We had no idea how much our life would change when Kevin was born. Everyone said things would be different with 2 children, but no one had any idea how much different. This birthday marks a big milestone for us. This is a very happy occasion. Not that his first birthday wasn't happy, but Kevin was activated 2 months prior that and we were still getting used to the equipment. We were still experimenting with saying his name to him. This birthday, Kevin essentially will say anything you ask of him and we carry on conversations with him as we do with any hearing 2 year old. Basically, he is a normal 2 year old boy. He had a train party, lots of friends, loved his cake, and got very messy from the paint at his party. He is a normal 2 year old boy! He will even tell you he is 'two years old' while holding up 2 fingers. We couldn't be prouder of him.

So much has happened since my last post. We went to Hawaii for a week and everyone had a great time. It wasn't really an issue with Kevin's CIs. That is probably due to the fact that he really didn't want to get in the water, but still, it wasn't an issue. Everything just seems to be getting easier these days.... He also seemed to have a language explosion in Hawaii. His clarity is getting better and his vocabulary is increasing daily! He learned how to say 'yes' instead of 'yeah' over there. He will tell you that he saw '2 whales' very clearly and a whole host of other words that are Hawaii specific (sting ray, shark, big boat, etc). It is just getting so much easier to talk to him.

We are finding that while things are getting easier, we still put in a lot of extra work with him for speech, equipment maintenance, and other things that go along with CIs. This will never end for us. But, to our friends and distant family, they don't see the extra work we do, they just see Kevin doing really well and seeming to be hearing and talking like a hearing child. They don't treat us any different anymore. It is strange because in a way, I liked to have people feel bad that we had to go through all this extra work and ask us about it and now that it isn't as noticable, I miss it. There are times that I still get frustrated with everything related to CIs and people have seemed to forgotten that this is an ongoing condition and we still do need to be 'checked in' on to see how everything is going. It is just strange to have gotten to this point. I guess that is why it is so important to have friends with kids with CIs because they are the only ones who can really relate with everything we are going through. I don't know if this last paragraph was worded as I was thinking it, but hopefully the gist will come across.

Anyway, our little angel is 2 and is doing incredible. What a great year this will be.

Latest testing scores

2008-03-13T14:54:00.000-07:00

We just got back from Kevin's Dr. appts yesterday. He had a 1 hour language eval, his bilateral mapping session, and an appt. with the surgeon for a routine follow-up. Whew! We were all exhausted last night, especially after the 2.5 hour drive home!!! Well, drum roll please, the results are in for his language tests!

The test was taken from a normal hearing child language test (as opposed to a DHOH test that is usually used). That means that this is the same test that is given to hearing peers, not just DHOH peers. He scored between 3.5 and 3.11 years for receptive language!!! He scored between 2 and 2.5 years for expressive language. Kevin is currently 23 months!!! Wooo hoooo! Can you even believe it! It is utterly amazing that he caught up so quickly and is doing so well after just 1 year of hearing. I always knew he was a smart cookie!!! :) He was even amazing me during the testing. What a fun way to start the day! Hopefully he will close the gap between expressive and receptive language sooner rather than later, because I think that is causing him some frustration as he knows what is going on, but can't express it fully yet.

His mapping was the most difficult yet, as expected. He is very much a 2 year old and didn't like being without his hearing during the neural testing. He didn't want to cooperate during the behavior testing (listening game), but was finally able to give us some results. The map didn't change much, as expected. He pretty much gave us nothing during the sound booth test, but mind you that was after 3 hours of solid tests (including the language test). I think he hears pretty well though, because he mimicked the sound of air coming out of a rubber ducky after he squeezed it. Even the audi was impressed with that!

So, our little angel is doing great and seems to be on track for mainstream into preschool. We do need to start some more emphasis on articulation now that his vocab and understanding is doing well. The work never ends!!! :)

A new sound

2008-03-09T22:09:00.000-07:00

Kevin started making a new sound today. It seems like the past week or so, he has really started to have clearer speech and tries to copy everything we say, but his sounds are the same. A lot of 'dee, dah, da, doh' etc. Today, he started saying the hard 'g' sound (like gut). He was saying it almost all day! It is fun to hear him say a new sound!!! His 'c' sounds were also clearer today.

I also took him to the zoo and he was saying all the animal names after I said them. He even said 'coyote'. That sounded like 'di-oh-tay', but he did it! It is funny how a new sound just brightens your day and really gives you a lift. I know Kevin is doing well and will be talking before we know it, but things like this are helpful confirmations!

Happy Birthday!!!

2008-02-21T20:09:00.000-08:00

Happy Birthday to Kevin. Happy Birthday to Kevin. Happy Birthday to Keeevvvvviiiinnnn, Happy birthday to Kevin!

Yea.... he made it! We all made it! We survived the first year with bilateral cochlear implants in an infant. There were many days when I thought I would go nuts, but we did make it and to see Kevin communicate so well, it is all worth it.

I remember reading posts from people who were at least a year further down the road than us when were getting ready for the implantation and I thought they were so informed and knew all the answers. Now I know, they aren't any more informed than us, just a little more experienced, but it is still pretty much trial and error with most situations.

This is our past year post-activation in a summary: 1 unexpected surgery, 4 defective processors, 1 cracked controller, 3-4 (I forget) cables, my son who can say 'I love you'. All the headache is completely worth it for him to hear! Everyday I am in awe of this amazing technology that can allow my deaf baby to hear me. Thank you!

Here is the video update of Kevin's 1st year progress: http://www.youtube.com/watch?v=_-oToiei6e8
Enjoy!

Almost a year...

2008-02-14T14:54:00.001-08:00

I can't believe that it has almost been a year since Kevin's activation! One week from today will be one year exactly! This Valentine's Day, Kevin can actually say 'I love you' (comes out like I uh you and I have to prompt him with each word, but he DOES it!) I find myself reflecting a lot these days about how all of our lives have changed since Kevin was activated. Obviously, Kevin went from a completely silent world to a hearing world and I can only imagine all of the changes he experienced last year. But, I also know that my world changed. When Kevin was first diagnosed, after the initial devastation I had complete fear. I had given birth to a child that I had NO means to communicate effectively with. If I wanted to hold meaningful conversations, I had to learn a new language. This is like someone giving you a baby and saying that the baby will ONLY speak Chinese and you better learn Chinese if you want to communicate with him. Of course, I was willing to learn a new language, but knowing that I HAD to was completely terrifying to me! Allowing Kevin to be implanted has given us the ability to effectively communicate at a much deeper level much earlier than if he didn't get an implant. He and his brother have a completely normal relationship and they communicate very well for an almost 2 and almost 4 year old. The day Kevin was activated last year was the first day I wasn't terrified of everything. I knew Kevin would be able to hear in this world and he would be able to hear me whisper all the sweet nothings in his ear. The last year year and just gotten sweeter and sweeter as Kevin has acquired his basic language skills and I know year #2 will be even better! I can't believe it has been almost a year!

incidental language acquisition

2008-02-11T20:47:00.001-08:00

Today we were sitting in the family room and playing with a talking cookie jar where you put a cookie in the jar and it says something back. We were working on the listening game, which is how we perform sound tests in the sound booth. Basically, Kevin holds a cookie to his ear, I say 'oo' or another ling sound covering my mouth, and when he hears it, he repeats it and puts the cookie in the jar. He is very good at this game and we were just dusting off his skills since he is going in for another mapping in a month. The cookie jar talks in a cartoon voice and says things such as, 'do you want to play with me?', 'Let's count cookies', etc. Well, Kevin got bored of the game and moved over and started playing with an etch-a-sketch. All of a sudden, the cookie jar said, 'Can I have another?' in the funny cartoon voice, and Kevin said 'yes' and immediately put a cookie in the jar! I was amazed that he tuned in to the jar, understood the words, and then performed the action! Sometimes I wonder how much language he is getting from other sources, and this confirms that he clearly hears and understands from a lot of different sources.

He is putting more and more 2 word sentences together too. Today he said 'off shoe' for 'take my shoe off'. It is fun to see him explore more sentences. His comprehension is also getting better and better. In therapy last week, the therapist was hiding objects in a box and Kevin would have to say what the object was. At one point, she just said 'I have something that you can roll and throw' and Kevin immediately said 'ball'. We just looked at each other in amazement.

more vocab and a great compliment

2008-02-03T20:12:00.000-08:00

Kevin really seems to be having a language explosion these days and he tries to say just about everything we ask of him. It is really fun to witness! He pointed at a goose in a book and for months he has called it 'duck' and I correct him and say 'goose'. Well today he said 'goose' very clearly! Yea!!! He is also putting many 2 word sentences together. His new favorite is 'doggy pillow' for his pillow, but it sounds more like 'dogee pilbow'. It is really cute! We were at a superbowl party today and the family had an alphabet chart up and I couldn't believe how many of the pictures on the chart he knew! I would say about 60% he knew and could tell me. I am so proud of him!

I also got a great compliment about him tonight. The person didn't know it was a compliment, but it brought tears to my eyes to hear her say it. She is a mom in Kevin's playgroup and I have only known her for about 3 months. She has a little girl Kevin's age and she was telling me her daughter said a 4 word sentence today and she couldn't believe the length of it! I was saying that Kevin was just getting to 2 words and joking that he was behind. She, very seriously, said that because her daughter is a girl, she is an early talker and Kevin isn't behind. I looked at her and said, 'yea, and he is deaf too'. She just paused and said that she completely forgot about that and never even remembers it because it is so 'normal' with him. I know that I feel the same way, but to have an outsider say that to me and mean it just made me stop and think about how grateful I am for the technology that has allowed Kevin to function like a hearing person. It is truly remarkable!

A Step Toward Independence

2008-01-29T23:00:00.000-08:00

Kevin made huge progress today! While driving in the car, he knocked his coil off of his head and he managed to put it back on his head! Yea!!! This is the first time he has put the coil back on his head. He did this numerous times today, so it wasn't just a fluke. He can't get the ear-piece yet, but the fact that he can put the coil on by himself means he is one step closer to not having to have me be right by him in case it falls off. I am so proud of him!

He also did something really cute in the car today. We have been working on legs apart and legs together in gymnastics, so we were driving and all of a sudden I hear 'open... close, open... close' and I look back and he is moving his legs apart and saying 'open' and then closing them and saying 'close'. Now, it sounded more like 'oden...dooze', but I understood him and he was so proud of himself. He is really making huge strides these days. He even said 'help me' today too. I feel like he is making a lot of progress on expressive language right now.

made my day

2008-01-26T20:11:00.001-08:00

Kevin sure does know how to put a smile on my face. He also knows how to get me frustrated, and that is how this story starts...
He is getting over a cold and is getting his last molars in, so this past week he has been particularly fussy. I also think he is starting to get frustrated with not being able to communicate as well as he wants to, but hopefully that will just continue to get better. Anyway, I was getting pretty tired of his whining and crying this morning and trying to get the kids ready to go out and all of a sudden, clear as a bell, he said 'more ice'. We all stopped and looked and he was looking at us holding up his mesh thing that I put ice in to help with his teething. I was so excited and completely forgot about the fussing. I gladly gave him more ice! His speech seems to be coming along really well right now. He also said 'doll' really well tonight too. I even got him to say 'I love you' having him repeat each word after I said it. Now, that sounded more like 'I da uuu', but he did know what I was trying to have him say and he got a big smile afterwards. At least he is really trying to say everything I ask of him.
More ice.... his first 'prefect speech' 2 word sentence! He really does know how to put a smile on my face after a long day! :)

An auditory child

2008-01-16T20:51:00.000-08:00

Kevin is starting to do something that only someone with CIs can do. He has quite a personality and he is really starting to crack me up! Let me first give you some background information on this story:
We are huge fans of the Supernanny. We use the 'naughty corner' with both of our children and it has proven to be extremely effective. If either one of the kids are misbehaving, we give them a warning and if the behavior continues, we put them in the naughty corner. Well, Kevin has always been a huge challenge to diaper and dress. He fusses and throws fits all the time. He has gotten better, but there are times when it is still difficult. The hardest time to change Kevin is right after his bath, because his ears are off and he can't hear me. I have become very impatient with this behavior, so I have started to grab the processor, put it on his head, tell him he is going to go to the naughty corner if this continues, and then remove the processor, get him dressed, and be done with it.

Well, now everytime he acts up without his ears on, I just move to grab the processor and he immediately lays down and behaves. I don't even have to put them to his head, I just reach for them! He even did this in the bath tonight when he was starting to act up over something. It just cracks me up that Kevin acts like he doesn't understand me without his hearing. Trust me, there are plenty of gestures, facial expressions, and mouthing of words for him to get the gist, but he cleverly acts as if he has no idea what is going on until he gets his sound input. I know I shouldn't get a smile on my face for this, but I really do. He is truly an auditory child!!!

The future American Idol

2008-01-09T21:27:00.000-08:00

Ever since Kevin started hearing with his CIs, he has always loved music! He seems to enjoy music much more than our hearing son. I was always told that CI patients couldn't fully embrace music because of the finite number of pitches they hear. They said CI patients wouldn't truly be able to appreciate it. It doesn't seem to be true for Kevin. I added a video clip of him singing a few weeks ago. Now, he actually does sing and say the exact words to Patty-cake and he know about 3 other songs by heart, but he will never let me get those on film. In this clip, he is just belting out his rock and roll voice while 'playing' the guitar. I think it is very funny because he is in his own little world thinking he is a rock star! You never know, maybe he will be on American Idol. When we brought him home from the hospital, Elliot Yamin was still on AI. I remember thinking, well he is deaf in one ear and he is doing ok. Maybe this won't be so bad after all. Indeed, it isn't! Enjoy.

Happy 2008

2008-01-04T21:32:00.000-08:00

I can't believe that Christmas is over and it is already 2008!!! The boys had a great time on Christmas morning and enjoyed opening all the gifts. Actually, Kevin got stuck playing with the kitchen, so Ethan happily opened up the rest of his gifts.

And now it is 2008. I can't believe we made it to this year!!! While 2007 was a miracle year for us, it was also a very challenging year and I am looking forward to seeing what 2008 will bring. I am hoping to hear the words 'I love you' in 2008. I am hoping Kevin will be able to put his own coil back on his head when it falls off in 2008. Basically, I am looking forward to witnessing the huge progress in Kevin's language development that any typical child does between the ages of 1 and 2. He is pretty much caught up with his age in language development, but the speech is still somewhat unclear. I feel like he is on the verge of a break-through and it will be coming soon. I can't wait!!!

Happy 2008 and may this year be the best one yet!!!

whisper

2007-12-20T21:01:00.000-08:00

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

2007-12-11T14:52:00.001-08:00

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)

2007-12-03T20:45:00.000-08:00

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

2007-12-03T14:29:00.000-08:00

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

2007-11-28T21:47:00.000-08:00

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....

2007-11-14T21:22:00.001-08:00

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!

2007-11-09T18:13:00.000-08:00

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

2007-11-06T22:18:00.000-08:00

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

2007-11-04T20:19:00.000-08:00

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!

2007-10-31T21:18:00.000-07:00

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

2007-10-31T15:47:00.000-07:00

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

2007-10-28T20:21:00.000-07:00

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!

2007-10-24T22:25:00.000-07:00

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

2007-10-19T23:35:00.001-07:00

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!

2007-10-18T20:34:00.000-07:00

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

2007-10-16T21:57:00.000-07:00

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

2007-10-14T14:11:00.000-07:00

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

2007-10-09T21:36:00.000-07:00

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

2007-10-01T21:47:00.000-07:00

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

2007-09-29T13:52:00.000-07:00

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!

2007-09-28T20:55:00.000-07:00

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

2007-09-17T21:18:00.001-07:00

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

2007-09-03T20:31:00.000-07:00

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...

2007-09-03T14:51:00.001-07:00

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

2007-09-02T20:28:00.000-07:00

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

2007-08-29T22:19:00.000-07:00

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

2007-07-23T22:59:00.000-07:00

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

2007-07-12T21:54:00.000-07:00

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?

2007-07-11T20:43:00.001-07:00

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

2007-06-13T21:52:00.001-07:00

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

2007-06-12T21:42:00.000-07:00

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

2007-06-08T12:58:00.000-07:00

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

2007-06-05T23:43:00.000-07:00

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...