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...

Happy Hearing Birthday!

It has been one year since Logan's world opened up in a whole new way! It has been quite the journey, one that I never thought would be as difficult or as rewarding as it is. I remember thinking that Logan would never develop spoken language, never hear the sounds of the world or enjoy the voices of his family. Now I love when I hear him whisper a secret to his brother, giggle at the funny noises his little brother makes and even talk back to me when he's been naughty!

I will be forever grateful to Logan's surgeons, audiology team and therapists who have invested their time and efforts to help him succeed. I wasn't prepared for what all of this entailed. I had no idea that teaching Logan to speak would be such an educational process and I appreciate these professionals for sharing their wisdom and patience with me.

What a better way to celebrate than to be receiving a second "ear". We are excited and anxious for Tuesday to come. Thanks for all you well wishes.

Here's to many more beautiful, loud hearing birthdays to come!

(pause music on the bottom of page before viewing)

Photo and video editing at www.OneTrueMedia.com

Click here to see Logan one year ago today!

Shadow Fun...

Let's Not Forget

With Christmas approaching so fast, I didn't want to forget to post a (belated) Thanksgiving post. We have been truly blessed and would seem ungrateful if we didn't express how thankful we are for all that we have.

Thanksgiving was different this year, but still memorable. We spent 5 days in Orlando and got a chance to visit all of the Disney Parks. We spent the actual Turkey Day with old friends (in Tampa) that we haven't seen in 5 years. I beamed with delight as Logan walked around the serving table and told me which food he wanted on his plate. "Turkey, please." "I want peas." "More pie, please." "Rolls all gone." Hearing him speak, never gets old.

Logan (accidentally) scored the highest score of the day on the Buzz Lightyear ride at Disney World...

We were some of the lucky few who received the Dream Fast Pass as part of Disney's Year of a Million Dreams...

Thanksgiving Day...

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."

Story Kit

Logan's teacher did this fun activity in class to help teach Thanksgiving vocabulary. When we were reading the story, The Old Lady Who Swallowed a Pie, he asked me to tkae a picture to show his teacher "Ms.Virgi",so I shot this little video.

Photo and video editing at www.OneTrueMedia.com

My Busy Day...

I had speech therapy at 8 am with Miss Brittany...

I had my Thanksgiving celebration at school at 11 am...

I took a quick snooze in the car at 12 pm...

I met up with dad for my ENT pre-op appointment at 12:30 pm...

Then we were home for about 20 minutes--long enough to do my "stars"...

We were then off to another appointment for my pre-op with anesthesia at 3:30 pm...

And finally, a reward for all my patience and good behavior today...

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...

Logan's new speech therapist!

While I was in the next room yesterday, I heard my older son, Tanner, doing "therapy" with Logan. It made my heart melt!

Make an on-line slideshow at www.OneTrueMedia.com

Ci Circle post

Although I know that by making the decision to have Logan (bilaterally) implanted we have given him a better future, you still worry every waking moment if he's progressing enough, when he will catch up with his peers and how hard his struggle will be as he grows. I love stories like this that give such hope and remind us that all this hard work is definitely not going to waste!

I found myself on YouTube!

I was searching through The John Tracy Clinic's website and came across this video of me being interviewed about Logan's story and the clinic, when we lived in LA. If you can get past the fact that I am speaking a million words a minute, it's fun to watch...

Fun!

So cute. Click here to check it out!

"My son has what?"

I received a very interesting phone call from the surgeon's office last week. Here's how it went:

Dr. Antonelli's assistant: So Mrs. Cragun everything looks good to go forward with the surgery, we are just waiting for insurance approval. The doctor looked at the CT scan and other than Logan's birth defect, everything else looks normal.

Me: I'm sorry, did you say birth defect?

Dr. Antonelli's assistant: Yes, Logan's E.V.A.S.

Me: His what?

Dr. Antonelli's assistant: His E.V.A.S., enlarged vestibular aqueduct syndrome.

Me: You'll have to start over, I have no idea what you are talking about.

Dr. Antonelli's assistant: Mrs. Cragun, your son has E.V.A.S. This is the cause of your son's deafness. Is this the first you are hearing of this? What did your previous doctors tell you the cause was?

Me: We were told that every possible test was done and that the cause of Logan's hearing loss was unknown, so yes, this is news to me.

After the call ended I immediately Googled Enlarged Vestibular Aqueduct Syndrome. I learned that E.V.A.S. is the number one cause of progressive hearing loss and the only cure for it is Cochlear Implants. A ton of questions went through my head. Why is this the first I was hearing of this? It's not like it is uncommon. Why wasn't Logan tested for this sooner, especially since they knew he had a progressive hearing loss? Why did his first surgeon not see it on the CT scan? I became confused and upset at our previous doctors in LA. I couldn't help but to think, "what if". If Logan had been tested for this when he was younger, he could have been implanted by age one (which is recommended). If the doctor had seen it in the CT scan last year, they would have known that Logan needed the second implant and we wouldn't have had to fight them for it (and fail) like we did. We had struggles with our audiologists and doctors in LA from the beginning and I feel like this just put me over the top.

Knowing this new information doesn't change the future much and I know that. Logan is still getting the second implant and that's what is important. But I think as a mother, you become upset by feeling that your child was not fully taken care of. I look at the struggles he is facing right now and how he is now starting to really feel the effects of not being able to communicate with children his own age. I can't help but to think that we are two years behind in his progress because he was not diagnosed and implanted 3 years ago.

Someone asked me, if it makes that big of difference that we know the cause, because it doesn't change much of anything--and they are right. But knowing that Logan has E.V.A.S. and that his left ear will FOR SURE become progressively worse, helps me feel peace now in getting the second implant done. I have been slightly nervous not knowing if we were doing the right thing or not, I know now that we are. Once again, I am grateful that we followed our promptings to pack up our family and move across the country. I know that a lot of this move had to do with Logan, we are so happy that things are all coming together.

Already?

People stare at Logan's "ear" all the time, I have just come accustom to it. It doesn't bother me, it never has. Logan's CI is what makes him special, unique and I want him to grow up knowing that and appreciating it. I actually prefer it when strangers (politely) ask about it rather than point and whisper. I have had many different assumptions from people as to "what is on his head."

I actually did have someone say to me, "How cute! He wants to be a big boy with his pretend bluetooth." I thought this story was outrageous, but I guess the CI does look quite similar. I have also had someone ask me, "What kind of brain disorder does your son have?" And one of my most memorable was when we were at Disneyland last year and a man came to me and said he wanted to pray for my son to heal him and give him blessings. He proceeded to lay his hands on Logan's head and pray. I interrupted him and explained that the Lord had already "healed" him by providing a way for him to hear and that this little device was our blessing. Children are my favorite. We have been in the check-out lines many times when a young child will ask out loud, to his mother, "What is that thing on his ear?" The mothers are always extremely embarrassed and either ignore their child or whisper to them that it is not polite to say things like that. I always smile and go forward with telling the child that when Logan was born his ears didn't work so well, so now he gets to wear this cool blinking thing on his ear to help him hear and learn to talk like other children.

Again, none of this has ever bothered me . . . until I saw it bother Logan. He, too, has adjusted well to wearing the implant-it's a part of his every day. But the other day we were in the post office and this older woman was staring at Logan's implant. I smiled at her and then looked at Logan only to notice that he was covering up his implant with his hand and burying his head into me. I asked him what was wrong and he pointed to his ear and then pointed to the woman. She quickly turned away and I apologized to her, as to which she did the same. It broke my heart. When did Logan become self conscience about his implant? Logan has always thought his implant was cool, with the blinking light and the cool stickers. I wonder why that changed. We thought that this would possibly become an issue as he grows older, and we have prepared ourselves to maybe have to deal with this in the future. He is only 3 1/2 years old, and it is already starting. As silly as it sounds, this was actually one of my concerns about getting a second implant...he would no longer have a side of his head that looked normal.

I think sometimes we forget what a miracle this really has been. I am grateful for the opportunity to share our joy with others. Logan is by no means speaking "normally" so we forget how far he has actually come. We are coming up on Logan's 1 year "hearing birthday" and are still astonished and amazed when something new comes out of his mouth. We know how blessed he is and we will make sure that he knows that as well as he grows and continues on his journey.

That's My Name!

Logan loves to share things with his younger brother, Chase. Every time he sees Chase in the morning he says, "Chase, wake up, yeah." Every time he gets out of the car to go to school, he says to his brother, "Chase, Bye." Every time we pick him up from school, he says, "Chase, Hi. How are you?" and shows him what he colored at school by saying, "Chase, look." This goes on all day, however, Chase never responds to Logan or even acknowledges that Logan is talking to him, mainly because Logan still hasn't mastered Chase's name yet--Chase doesn't know he is being addressed. I usually repeat Chase's name to him, so that he will look up at Logan-I want Logan to know that his words have meaning, that we are understanding, so that he doesn't get discouraged.

Anyway, today in the car, Logan was sitting in the backseat, behind Chase. Logan found a batman toy in the car that he wanted to show Chase and said, "Chase, Chase!" (with the 'ch' and the 'a' sound sounding very clear). I was getting ready to repeat Chase's name for him, when Chase looked back at Logan and said, "What." He recognized his name! Logan said it good enough for Chase to understand. I grinned from ear to ear!

I feel like this is a start for "normal" brotherly playtime!

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.

click here and here

New experience book...

Holidays seem to be awesome ways of introducing new vocabulary to Logan, so I made a Halloween experience book of all of the "Scary" things that are involved with Halloween. I used pictures from the items that are around the house so that he can also identify them to me as he walks by them...

Skeletons...spider webs

Leaves...candy

witch...candy corn

black cat...scary house

Jack-o-lantern...monster

pumpkins...ghost

costumes..."Trick-or-Treating"

Great Language Games from Cranium...

"Hullabaloo" helps with animal recognition and sounds. Also with colors and shapes and names of motor skills. Logan has to listen to the DVD for instruction on what to do next. Ex: "Hop to a purple mat..."




"Cariboo" teaches numbers (1-4), colors and letters (A-D).

My Halloween Ears...

Logan's Spider Man stickers were getting old, so we decided to change them out. We have been talking so much about Halloween lately and learning all of the "scary" words, that Logan wanted "scary" stickers on his ears. We thought pirates would suffice. He loves them and shows them off to everyone. Before, getting him to wear the hearing aid was a struggle, but now, he wants to wear the aid as much as the CI!

Long time coming...

Logan will be 4 in January. I realize that I get him started on "things" later than I did my first son. A lot of my excuse is because there is so much focus on getting him to speak that the other "things" get put off. One of these things is chores. Logan picks up his toys and helps around the house, but has never been given official chores. My older son had minor responsibilities when he turned three, so I decided to crack down on Logan and start him this week (when you are in a family of 5 you have to learn to pull your weight at an early age).

I bought some wooden star shapes and colored popsicle sticks from Joann's. I took pictures of his chores and printed them out small enough to fit the stars. After attaching the stars to the sticks, I wrote "done" on the bottom of the stick. After a chore is completed, he turns the stick over in the jar. When all his jobs are finished he gets a sticker. He loves this and is eager to get his jobs done. It has been a great language activity as well as he learns names for items around the house.

Fun language activity...

We found lots of fun today with a big cardboard box, paint and little paper men. Logan's puppet was Daddy. We really haven't role played much and I didn't know that Logan even knew how, but it was hilarious to watch him as he told stories as if he were Dad. "I Daddy, I go school...I Daddy, I go school..." (My husband is in a dental residency so he wears blue scrubs and goes "to school") Tanner would explain the "play" to Logan and then they would act it out for me and Chase. Logan wouldn't get all of the details, but it was great to see him say or do the parts that he understood. Tanner would say, "Logan you sit on the tree and I will throw you a ball." Logan would walk his puppet over to the three and sit on top. Then he said, "Up tree, I want ball." Tanner looked at me and said, "Mom, I didn't even sign and Logan knew what I was saying." It put such a smile on my face to see my boys playing "normally" together.