Loving Life in Surround-Sound!

Today we attached the second processor, so Logan is officially hearing bilaterally! I watched him carefully as he walked around the house, playing with his brothers. I was surprised at what a difference we witnessed in just a few hours. Even my older son enjoyed calling Logan's name and watching as he turned his head, knowing exactly where the voice was coming from (opposed to turning his head side to side until he realized the location of the sound).

You should have seen how excited I became when I asked Logan to feed our turtle, while standing a room away, then watched as Logan walked in to the kitchen, opened the fridge and got out a piece of lettuce...all while the TV was on in the room that he was in.

We love being bilateral!

Enjoying a Dave Matthews concert with two years...

"How many ears do we have today?...

"He is your son, not your science experiment!"

Tonight we did a little experiment to see what Logan is hearing with just his right processor vs. his left.
You'll notice that with his original one on he has no problem listening and identifying what is being said, without any visual ques.
However, with his new one on he has trouble staying focused and listening and needs visual ques to be able to repeat the words. He usually just guesses as to what is being said.
My husband joked with me and said, "He is your son, not your science experiment!"

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Ughhh!

What a frustrating week! Logan has not been too happy with his new "ear". He is trying so hard to understand what is going on and is still having trouble comprehending everything. He actually asked for his "Spider-Man Ear" today (his first implant). He said he wanted to "switch". I tried to explain to him that we had to wait a few more days to help his "Bat-Man ear" work better, I couldn't tell how he felt about that. He has been slightly irritable and emotional this week and has been fighting with his brothers (more than normal). He will walk by the blinds, rub his head on the couch and shake his head so that the processor "accidentally" falls off and he'll then say "whoopsie" and look at me like "oh well". I feel terrible that this is so rough for him-- although each day has gotten better. I don't want this to be a bad experience for fear that he'll never like the new "ear".

We made a calendar and marked the day when he could wear both of his implants. He counted the days from now until then and gave me a thumbs up!

I have been trying to be patient as well. I have come accustom to having him hear my voice and respond, so it's been frustrating to have to tap him to get his attention, or run after him when we are crossing the street. And the worst...losing him in a store today and knowing that he can't hear me call his name or even answer a stranger when they try to help him. Ughhh!

He has been focusing so much on lip reading. We have been working so hard to teach him to not do that for the past year, but I have not discouraged it these past few days because, again, I want to make this as easy as possible for him.

Today he was able to repeat the ling sounds, which he wasn't able to do the last few days, so we're getting there. I just hope Logan can be patient.

Logan's new "Bat-Man" ear is up and running!

Today was Logan's activation day for his second implant. It, of course, wasn't as dramatic as turning on the first one, but it was still a big day for us. Everything looks great and the surgery was a success, but Logan isn't too keen on this new ear. He will wear just the new ear for about two weeks to get his brain to start relying on that side as well as the right. The problem we run into is that with only his new implant on, it's like starting over from the beginning--meaning he can't process sounds or language quite yet--which is very frustrating for him. He has adapted very well to hearing the sounds and voices around him, so when he was not able to quite understand the sounds that were going in, he became upset. He told us that he didn't want to wear the new ear because it was "too loud". The audiologist told us that the volume was at a comfort level, but that was just Logan's way of trying to express that he couldn't make out what he was, or wasn't, hearing. We were talking to him, asking him questions and he had a sad, confused look on his face as if he were slightly scared and nervous that he had lost the understanding he once had. Without an implant on, he knows that he doesn't get any sound, so I think it confused him that even with an implant on, he wasn't registering the sounds.
We brought the pack of Bat-Man stickers with us to the appointment and put the stickers on right away. He now has a "Spider-Man ear" and his new, "Bat-Man ear", he now has double the super hero power!
We had to coax him a little to keep it on the rest of the night, but we know things will get better. We are eager to see what this next year has in store for Logan!


It was a little surreal for me to see him with both implants on...

mapping (programming) the new implant...

Not a happy camper...

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Ready to get back to life!

Logan is recovering nicely. Kids are so much more than resilient than we are! He was eager to remove the bandages and even got up in the middle of the night, on day two, to throw the ace wrap in the garbage. When I asked him why he took it off he told me that Dad said he could take it off when he woke up. Dad was right, only we expected his wake up time to be about 8 am, not 2 am!
He stopped needing his medication earlier than expected and has been begging to go back to school. He will continue on the antibiotics to keep him infection free (from the mucous issue).
His activation day is on January 5th. We are eager to see the results once we get this second one up and running. Thanks again for all your well wishes. I look forward to one day, Logan understanding how loved he really is.

We were slightly shocked that the incision went up into his hairline, we were told it would be completly behind his ear, like his first one. Hopefully his hair will cover it better when it grows out.

Logan's incision began opening up, so "Dr. Dad" shaved his head a bit so he could apply some butterfly closures...

I also thought I'd attach these fun pictures of our visit with Santa this weekend...

Phew!

"God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way." --Unknown

Logan was wonderful today. He is such an example of courage and strength. As soon as we entered the pre-op room I think he became slightly aware that something was up. I could tell he was a bit nervous but he was very cooperative with all of the procedures that needed to be done before surgery. I was doing fairly well until Logan called my name as he was walking away and signed "I love you". Jake was able to take him back to the surgical room this time, which was nice. He did as we practiced and took ahold of the "sleeping mask" himself and went right to sleep without a fight.

During surgery, the doctor found mucous in his inner ear which was cause for concern. He warned us that if we continue with the surgery, there would be a greater risk of infection and meningitis. We decided to continue with the surgery and feel good about our decision.

After surgery, Logan woke up a little groggy and irritable but calmed down pretty quickly. We went home only 2 hours after surgery.

Thank you so much for all your well wishes, we are grateful for all of you! Also, a big "thank you" to Grandma Cragun for flying in to take care of the other brothers today while we were at the hospital.

Making sure we get the correct ear...

Dad and Logan ready for surgery in their hospital PJ's...

Gator and Logan reading their new Christmas book...

Being silly with their caps...



AFTER SURGERY--

Playing with his new Star Wars toy...


At home watching Polar Express...

Obviously, feeling much better...

Good Night...

I think we're ready!

Last week we went to Build-A Bear to let Logan build a "surgery buddy" for the big day tomorrow. He chose a green alligator and dressed him in a Batman shirt. He named him, Batman-Gator! We also purchased a set of scrubs for the Gator to help in preparation for Gator to "go to the doctor and get a second ear."

We practicing prepping Gator for surgery by taking his blood pressure, listening to his heart and taking his temperature. The Gator would put on the oxygen mask and take a nap. We would then wrap his head in a bandage and when he woke up he would receive some juice and a small surprise. We have been practicing all week in hopes that Logan will be as calm and prepared as he was last year. It's almost midnight, we go in a 6 am...I better try to get some shut eye!

Quick Note: Logan has been sick for the last 5 days, so we are crossing our fingers that the surgery can still go forward.


Bringing the Gator to life...


Giving him his first bath...


All dressed up...
In his "doctor clothes"...

Prepping him for surgery...

Practicing wearing the mask,taking a nap and wrapping his head with a bandage on...

Good night...

Is Bilateral Really Better?

From Ci Circle News

Is Bilateral Really Better?

Written by Val B., Nov 14, 2008

"One of the most common questions people ask me is "So what's the difference between having a child with unilateral and bilateral hearing?" Having a child who wears only one cochlear implant (CI), but also a child who wears two, lets me see on a daily basis how different my children are in that respect. Before I begin telling you about my kids, I wanted to mention that not everyone is a candidate for bilateral CIs. It may surprise you to hear that just because your child received a cochlear implant in one ear, doesn't necessarily mean that they would be a good candidate for bilateral CIs. Maybe they have good access to sound with amplification or a hearing aid or maybe medically they don't qualify for the surgery itself, but you should always consult your surgeon and audiologist to help determine whether your child would be a good candidate. In my son's case, his anatomy prevents him from receiving a second cochlear implant. He has severe inner ear malformations and his facial nerve is also higher than that which is found in a typical patient. In fact it took two attempts for him to receive his one CI.

When each of my children received their cochlear implant (Gage at age 3 1/2, Brook at age 2 1/2), we knew we had done the right thing. We couldn't have been more pleased with the results, they were actually hearing. It was amazing to watch them listen to new things, hearing soft sounds they never knew existed. While at the audiologist's office for a routine visit, we were told that my daughter would be a great candidate to receive a second CI. I told her we would think about it, but I seriously doubted that we would be interested. I had already read about the benefits of bilateral hearing: I knew that it would help with localization (figuring out the direction where sounds are coming from), I knew that she would have an easier time hearing, I knew she would be less tired at the end of the day. My concern was that I had a five year old boy, who I could not offer these things to. How could parents offer all these great and wonderful things to one child, and not the other? After many sleepless nights, I realized that we as parents shouldn't deny my daughter these things either, just because her brother was not a bilateral candidate.

I called the audiologist's office, and we began the pre-implant process once again. Like before, we didn't really know what they were missing until she received this second cochlear implant. She wore both processors from the beginning, removing her first one during therapy visits, so that we could try to teach her to hear with the newly implanted ear, just as we did after the first surgery. Within weeks, my now bilateral child, could actually hold a conversation in the car without me having to turn around to face her, something I still need to do with my son.

Even today, over a year later, she cannot only hold a conversation in the car, but she can do it with the radio on. I also discovered that she was no longer searching for sounds, they simply found her. If they are both playing on the floor and the telephone rings, my son's head pops up, he looks from side to side, and resumes play, realizing it was the telephone. My daughter never even looks up, but might say "Is that my Nanny calling?" She automatically processes the information since she can determine direction from where sound is coming. While outside playing, my son can hear cars pass by and for safety reasons alone, we are so thankful he can. My daughter however, can hear the cars approaching, before they pass by, truly amazing. When using the phone, my son needs to use the telecoil option on his processor. My daughter can use the speaker phone and not only hear the person on the other end of the line, but she can hear background information from that party and detect what is going on at that house. She heard her grandmother cooking as she spoke to her on the phone one day, and that was incidental information. We naturally say my son's name before we speak to him, to let him know that he needs to listen to us, but with my bilateral daughter, we can skip this and jump straight into conversation and she can follow along with greater ease. If someone approaches my son unexpectedly or doesn't announce that they are speaking to him, he always follows with "what?" needing a repeat.

Those considering bilateral cochlear implants for their child need to also consider the added expenses. The child will need to have both processors mapped as opposed to just one device, and there will be other added expenses such as batteries, co pays, etc. For us, we decided the benefits outweighed these expenses and we chose to proceed with our daughter's second device. We felt that having a back up way to hear, should one CI lose sound temporarily, would be to her advantage. I can certainly tell when my daughter only has one device on, because she needs frequent repeats just like her brother. We feel good that she now benefits from the bilateral hearing, and we know that her brother has learned to adapt well with his unilateral hearing. He automatically positions himself close to the speaker, he uses closed captioning when available, and he has little sister to look to for help when he needs it."

I should probably explain the Mickey Mouse countdown above...

I received a phone call form the surgeon's office 2 days ago saying that they had a cancellation and that Logan was scheduled to have his surgery done THIS Tuesday, Nov. 25. I was a thrilled that they got us in so fast, I was nervous that we hadn't had time to prepare Logan for his visit to the hospital, I was emotionally not ready for it to happen so quickly and then....I was disappointed that November 25 would not work for us. We are planning on going to Orlando (and Disney World) over Thanksgiving break. The boys would be crushed if we changed plans and since they had another date that was also soon, we took that one instead.

DECEMBER 9, 2008!

Here we go again...

Prayers Answered!

The only thing that has been standing in our way of the second CI (as far as we know), was getting insurance to pay for it. My husband is a (non-paid) resident at Univ. of Florida and I am a stay at home mom--therefore, the kids and I are on Medicaid with a second type of insurance, CMS (children's medical services, a insurance for disabled children).

Medicaid does not pay for a second CI and we were told by doctors and audiologists that they had never heard of CMS paying for a second one and to not get my hopes up. Also, our chances were lower than normal especially with the economy being in such bad shape. My husband did not want that to stop us from doing this for our little boy and said that we would take (more) loans out if needed.

We are a family who live our lives based around our faith. All of our major decisions that we have had to make regarding Logan have not come with out much prayer and faith. This decision was no different. When my husband graduated UCLA dental school, we had a choice to make about where he would do his two year endodontic residency. We could stay at UCLA, which was financially a better decision, or go to Florida, which would put a real strain on us financially. Neither of us had been to Florida, we didn't have any family or friends near there and didn't know much about the city. We tried to ignore the feeling that we should make the move to Florida, it was a scary, unknown adventure. After much thought and prayer, we felt that there was something in the small town of Gainesville that was drawing us there, possibly getting Logan's second ear done, since UCLA was denying us one there.

On Sunday, my husband and I decided to fast for the purpose of hoping that CMS would cover the $80,000-ish upcoming surgery.

I was surprised to hear from CMS so quickly today, I wasn't expecting a call for another week or so. Well, the answer brought me to tears...in a good way. They were going to cover the surgery! I was shocked and had to ask again if they were aware that this was CI # 2, because I heard that they don't cover that normally. The woman chucked and assured me that CMS knew what they were approving! I am still a bit skeptical since this has all happened so quickly and easily, we'll keep our fingers crossed!

I know that my Heavenly Father is mindful of us and am grateful that prayers are answered!

No CT Scan needed!

The ENT's office got a hold of Logan's CT scan from last year (which I have been trying to get my hands on for weeks) so a new one isn't needed! Yeah!

2 "ears"?

So as many of you know, we have been eager to get Logan a second CI, although this decision was tough--it was easier than deciding on getting the first one. When we lived in LA, UCLA denied us a second one because "he was doing so well with just one". We have been pursuing it again since moving to Florida. We finally got an appointment with the ENT doc and the day went like this...


-I signed Logan in as a new patient and filled out required paperwork.

-We were called back by a nurse and met with the doctor's assistant for about 25 minutes for a routine "getting to know you" appointment. After we were done I briefly mentioned that we were interested in getting the second implant done but was interrupted in by a knock on the door.

-Dr. Antonelli came in and gave Logan a high five, looked in his ears and listened as the assistant gave him cliff notes on our 25 minute conversation. She ended her speech by saying, "Oh, and they would like to look into getting Logan a second CI on his left ear."

-The doctor then said, "Sounds good to me, nice to meet you." and they both left the room after giving me discharge papers.


What just happened??? Was he saying "sounds good to me" to the implant, or was just that his normal good-bye/see-you-later speech.

...Later that night I got a call from his office giving me the date and time for Logan's CT scan--October 30th! I was confused and asked the nurse why he was getting a CT done. She said, "It says here in his file that he is having the cochlear implant surgery done and this needs to be done prior to the surgery."

YIPPEE!! That was what I was hoping she'd say. But wait, was it really that easy? I say, "We want a second CI" and the doctor says, "OK"? I am not getting my hopes up, but it sounds like its a go. I'm sure the Audiology and CI team have to meet to agree on this and insurance has to approve (which seems to be near impossible to get a second one approved), but so far it sounds like we are on the right track.

We'll just have to wait...

Well, we cannot appeal the decision made by UCLA to not do the second implant since they know "what's best". And besides, since the insurance approving the second CI would determine a lot on the recommendation of our audiologist, I figured that it would be better to just wait until we get to Florida, since (if she doesn't agree with getting it done) her letter would be of no help to us anyhow....I am trying to be positive, am I convincing? :-) Besides, I have heard that UCLA is one of the more conservative clinics with doing a second CI, so hopefully we'll have more luck back east.

Sometimes I just get tired of "fighting" the professionals, especially since the things I fight for seem so obvious. I guess I figured I wanted to get all of that out of the way before we move. There will be so many other things to get done with a big move like that and I was hoping this would be one last thing on my plate, but one of the big reasons, is because of the amazing support I have here in LA. I am afraid I won't have that in Florida and as much as I hate to admit it, I need that. I have the most wonderful people living around me that go out of their way to lend a hand to me and my family, even when I try to push it away. I am a member of the LDS (Mormon) church and the women here, in the church, have rendered so much service. When Logan had his surgery I had several women insist on taking my other two children for the day and had several others bring over dinner so that I could just focus on Logan. I always have a willing babysitter for my other boys when Logan has one of his many appointments and none of them want anything in return. I will really miss their great friendship, I don't know how I'd do it without them.

UGHHHHHH!

I'm so done with all of this! I received a call from the audiologist yesterday stating that the team of audiologists at UCLA have decided that they are not going to submit to insurance to do the second implant. I was shocked. I didn't understand why we didn't have a say in the matter, especially when, according to his latest audiogram, he really could go either way with getting the surgery done. When I asked why they decided not to go ahead with it she said it was because they believed he would not benefit from the second Implant...WHAT? That makes no sense, of course he would benefit from it. Right now the sole purpose of having just a hearing aid in that ear is to help with localization and to help with what is called the "cocktail setting" (meaning, being able to focus on a conversation and localize in a crowded/noisy environment, like a cocktail party). I witnessed Logan in that type of situation just last week and he wasn't hearing a thing. I was a foot away from him and he couldn't hear me call his name. I feel like I need to try to appeal this, seeing him at home, I know that he needs more.

When Logan had first lost the remaining of his hearing, at 18 months old, I tried and tried to convince the doctors that he had become worse. It took them a year to even consider that that could have happened. Looking back now I wished I had done more, been more persistent, been more demanding. I feel like Logan missed out on a crucial time for language development because I wasn't "mean" enough. Because of this, I feel like this time I need to go with my gut and get done what I feel my son needs.

I'm not sure how to do this, or if I even can. I thought I was going to have to convince the insurance company to do this, not my audiologist. I feel as though I am up against a wall.