Wednesday, October 31, 2007

Happy Halloween!

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

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

Another hurdle

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

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

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

Sunday, October 28, 2007

October 26 came and went

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

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

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

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

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

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

Wednesday, October 24, 2007

Post-op report and a great day!

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

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

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

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

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

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

Friday, October 19, 2007

Get Ball

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

Thursday, October 18, 2007

It was option #1!

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

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

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

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

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

Tuesday, October 16, 2007

Kevin broke his implant

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

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

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

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

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

Please pray for Kevin this week and especially on Thursday!

Sunday, October 14, 2007

Gymnastics party

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

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

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

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

Tuesday, October 9, 2007


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!!!

Monday, October 1, 2007

Baptism anniversary

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

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

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

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