Wednesday, December 30, 2009

Our lucky boy

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???? :)

Wednesday, November 4, 2009

Halloween and Dreams

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!

Sunday, October 11, 2009

Super Agent Oso

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!

Tuesday, September 29, 2009

Who says CI kids can't appreciate music!

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!

Tuesday, September 15, 2009

Good-bye Annie

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...

Thursday, August 20, 2009

Mainstream Preschool

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!

Tuesday, August 11, 2009

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!!!

Sunday, May 3, 2009

Kevin talking

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.

Friday, May 1, 2009

So much to post

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.

Wednesday, March 4, 2009

Beyond any expectations!

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!!!

Sunday, March 1, 2009

Changing the rules?

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...

Wednesday, February 25, 2009

Long update

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!

Sunday, January 25, 2009

cute stories

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!

Thursday, January 22, 2009

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...