K.L.s Wondering Mind

Coffee on my Deck

2011-07-23T09:49:00.000-07:00

My deck, looking toward our back yard.

Next is from the deck stairs, looking the other way.

Ed's Big 5 0

2011-06-13T19:16:00.000-07:00

So, on the left is the original pic from many moons ago. This was passed around to various family members, and look at how they showed up to the party. Ed even got into the swing of things, and changed into an appropriate outfit.

From left: Jenna, Megan, Jeannette, Matt, Ed, Steve, Pam, Rachel, Jen, and Jim.

Ed's New Photography Website

2010-12-29T11:05:00.000-08:00

Ed finally has gotten his new photography website up and running. Please go take a look at his photos. They are pretty awesome. Here is the link.

http://wanderinglensphotography.com/

Rachel's Middle School Band Concert

2010-12-10T08:13:00.000-08:00

Rachel was pretty nervous and excited for her first band concert. She played bass drum and chimes, and she did great. Here are pictures, and links to her concert.

Here is the link to Bells and Whistles, with Rachel on bass drum.

http://www.youtube.com/watch?v=8nyp8lZbY7A&feature=share

Here is her second song, with a closeup on her on the drums.

http://www.youtube.com/watch?v=nemIZcGRgOo&feature=share

This is the intro to her last song, where she played the chimes.

http://www.youtube.com/watch?v=9VNi5eZ_0Is&feature=share

Rachel update

2010-11-30T14:59:00.000-08:00

A few weeks ago, Rachel experienced two episodes of a "sound spike" in her right implant. Hard to explain but similar to an electrical or sound surge that was very loud and uncomfortable. The culprit seems to be her coil, which we promptly replaced. What was odd, was that when we took her to Children's to have the internal processor checked, they needed to put a spacer on her coil for the computer to be able to get feedback from her internal component. She never needed a spacer before, so that was concerning. And a mystery which has thus far, avoided explaination.

A Cochlear rep came and she did an integrity test on Rachel's right internal processor. Since her map is very unusual, the readings from the test were also unusual, but the rep felt that they were in compliance with her map, and that nothing showed up as being a problem. She is going to have the engineers take a look at the results though, and give us a more thorough answer later. Mystery spacer aside, since replacing the coil, Rachel has not had any other incidents of the sound spike, so we are keeping cautiously optimistic that the problem is solved.

Kitty Affection

2010-09-07T15:35:00.001-07:00

My cat loves me. Well, I should say Kyle's cat loves me. I'm not sure this is normal affection or something bordering on obsession, but the cat couldn't care less. He disappears during the day, and shows up just before I get home. He then wanders around rubbing up against my legs until I pick him up and drape him over my shoulder. If I sit down, he jumps onto my lap. He then rubs hs face against mine, licks my cheek, sniffs my mouth and nose, noses into my neck, and basically insists on being petted. Then the other day, he did something unusual. He visited my husband. Ed is not a real cat lover. He tolerates them, but would be just as happy not having to vaccume up cat hair all the time. The cat turned to him, stretched his front paws out until they were on his arm, then stepped over till he was on Ed's chest. (That is what Ed gets for slouching on the couch.) Then the cat did a half circle, and presented his butt to Ed's face, tail straight up. Then he just stood there. Ed's face was about two inches away from cat butt. Being the supportive person that I am, I'm sure you know what I did next. Yes indeed. I laughed myself silly. I cried, I was laughing so hard. I almost wet myself. Neither of them moved. For some reason, Ed wasn't laughing though. The look on his face just made me laugh harder.

I finally reached over and "rescued" my cat from what was probably an imminent toss across the room. No, the cat was not trying to spray. He was just standing there, letting Ed admire his backside. I'm sure the view was inspiring.

Bless You

2010-09-07T15:30:00.000-07:00

Sometimes people ask me if Rachel hears better now that she has two implants. I think that would be YES. The other day, she and I were downstairs. She was playing on the computer, and I was reading. The computer game was making its normal noises, although quietly, since I prefer to read in a quiet environment. If you know our basement, it is L shaped, with the computers in the Long part of the L, and the door at the top of the short part of the L. Basically, her back was to the door, and it was around the corner from where she sat. The door was open, and Ed was upstairs, directly above us. He was watching TV, and going through tissues because he had a cold. Then he sneezed. Rachel turned to me and said "Bless you." Huh. She heard that. I told her that it was her dad who sneezed, and she said she thought it sounded kinda quiet. I think it even surprised her that she heard him. She then ran upstairs to bless him.

Yes, I'm pretty sure she hears better now than she did before.

Audiogram

2010-08-02T11:09:00.001-07:00

The audiogram shows Rachel's hearing with her left implant (CL) and her right implant (CR). As you can see, her left one hears at a much lower db, and since she has a full insertion of the electrode array in the left, and since she has had that one since she was 12 months old, she hears extremely well with that ear.

Her right ear is getting better at understanding sound, but it is slow progress. The most important thing is that with both implants working together, she hears amazingly well.

The doctor did testing in noise, and will send me a report when she gets it written up. I'll share that with you then.

How old?

2010-06-09T16:50:00.001-07:00

Happy Birthday Honey. Enjoy your last year in your 40s.

More Lilacs

2010-05-11T08:26:00.001-07:00

Birthdays and Springtime

2010-04-28T08:19:00.000-07:00

Rachel's birthday was on Saturday. She turned 12. She is getting into being more dressed up, so wanted to wear the outfit we got her for Easter. The best part about spring birthdays is that the lilacs have started blooming. Take a look.

Callie

2010-03-10T08:12:00.001-08:00

Our 15 year old cat Callie finally got too sick to be comfortable, so we made the difficult trip to the vet so she could be free from the tumor growing inside her. Rest in Peace sweetheart.

Rachel's Progress

2010-02-09T16:34:00.000-08:00

Rachel had a major remapping of her newer right processor in January, and the doctor wanted her to spend some time with the new map before her hearing is tested, so we go back in another week for the follow up visit. But for me it is just a way to quantify what we already know. Having bilateral implants has made a world of difference in Rachel's real world hearing. In booth testing, her original left implant has shown amazing ability. She is now being given adult sentences, because the age appropriate ones are too easy for her. But in noise (read real world situations) her hearing tests out at about 12% below normal hearing. What that really means is that she had a great deal of difficulty following conversations when more than one other person was talking to her, or if they were in a noisy environment. She spends most of her time in that exact environment. Lots of kids, hallways, cafeterias, class rooms. Her usual reaction was to simply disengage. She tuned out. All the other kids would be talking to each other, and she was off in her own little world, oblivious to what was going on. She simply could not follow along.

Now, a year post implant with her second implant, it is all different. She is engaged in the group discussions. She can follow along and keep up. She injects her own comments and they are relevant. The kids no longer roll their eyes when she says some off the wall comment, because she is no longer off the wall. It has made a huge difference in her social life at school, and in her enjoyment of school. She has always been a happy kid, but she has had difficulty making friends her own age. When possible, she always hung out with the younger kids because they were easier to interact with. And they were more forgiving if you said something out of context. But since she is now in middle school, there are no younger kids to hang out with. I think we got her implant just in time. I'm very relieved she is doing so well. It takes a load off my mind.

She still loves signing, and has joined the after school ASL club, and she eats lunch with the other DHH kids, but she also spends time with hearing kids, and at church she is getting involved with the youth group activities. Our goal in giving her implants was to give her access to the hearing world, with the idea that as long as she also had access to sign language, she could go where she wanted, and be with whoever she wanted to be with. She could also get a job without having to jump over the barriers that many Deaf people encounter. I think we have given her that.

The End of the Dark Time

2010-01-19T10:26:00.000-08:00

I always celebrate the beginning of longer days, when I no longer have to drive to work and drive home from work in the dark. Here is a taste of what it looked like on my morning drive.

Speech Text

2009-12-22T08:48:00.001-08:00

I'm putting Rachel's speech in a different blog post, because I don't want to make the other one any bigger than it is.

Hi. My name is Rachel Larsen. I am 11 years old and I am in sixth grade at Illahee Middle School, in Federal Way. I am deaf and I have two cochlear implants. I have been mainstreamed since second grade. Before that, I was at North West School for Hearing Impaired Children. I liked NW School, but it was a long bus ride. I rode on a school bus for over an hour each way. After I was mainstreamed, I had an interpreter in second and third grade, but now I don’t. I am doing really well without needing the interpreter any more. At NWSFHIC, They use Total Communication with Signing Exact English. Signing Exact English is different from American Sign Language. Signing Exact English has signs for every word, suffix, prefix and past tense. ASL changes the word order, and uses the signs themselves to convey meaning. SEE does that too, but uses all the words, exactly as we do with spoken English.

I got spinal meningitis when I was a baby and lost all my hearing, so my mom and dad decided to get me a cochlear implant. I had normal hearing for almost 7 months, then no hearing for about 7 months. After I lost my hearing, my parents started using Signing Exact English with me. They chose SEE so that when I got my implant, I could see and hear the same words at the same time. I got my first cochlear implant two weeks after I turned one year old. They continued to sign and speak to me for several years. It helped me learn to speak faster. Seeing and hearing the words together made it much easier for me. Today, I don’t use sign much, but it is helpful when I have my implants off. I also use sign language with the other deaf kids at school. Illahee has a deaf program, but we are all mainstreamed with the other hearing kids. I got my second implant in December of 2008, one year ago. My right cochlea is filled with bone, so the implant wasn’t nearly as easy to put in, and it doesn’t work as well as my left one. But it has made it much easier for me to hear in noisy places, I hear at farther distances, and I can locate where sound is coming from way better than before.

The implants work really well, and I like them a lot. I can plug my CD player directly into them and listen to music. I can also plug in an FM system the teacher uses with a microphone. That way I can hear the teacher even when their back is turned or they are far away.

There are two parts to the implants. The internal part is put into my cochlea surgically. The external part is called the speech processor. It turns sound into electronic signals. The round coil on my head has a magnet in the middle and transmits the signal. Just under my skin, underneath the coil, is a receiver plate, and it also has a magnet in the middle. The magnets stick together. The signals from the processor get transmitted from the coil to the receiver plate like radio waves, then down into the electrode array that is in my cochlea. The sound then gets transmitted to my auditory nerve. The auditory nerve takes the signal to the hearing center in my brain, just like it does with hearing people.

When I first got implanted, I had to get the implant mapped. A map is the programming that tells the implant how loud to make each sound. It has to start very quiet, and slowly get louder. I had a new map weekly at first. Now I get my map checked once or twice a year. It usually doesn’t change anymore though. I also had to go to speech therapy every week. Actually it should be called language therapy. We needed to teach my brain how to understand sounds and language. Most kids can simply use their ears and learn how to talk and listen. It is not as easy with the implant, so we all had to work a lot harder to make my brain understand everything. I still go to speech therapy twice a month, to help me learn to hear with my new right implant.

My mom is here with me, and she is going to talk about how hearing works, what the implant costs, how I lost my hearing and why she and my dad decided to get it for me. We will also answer questions. So here is my mom.

Rachel's Visit to ASL Class

2009-12-21T15:42:00.000-08:00

Rachel and I visited her cousin's highschool ASL class. Below is a video of her speech.

Happy Holidays

2009-12-14T09:39:00.000-08:00

Happy Holidays Everyone!

DC with McB

2009-10-22T09:52:00.000-07:00

Since I am not the greatest blogger, this entire post is happening in reverse order to the actual event. If you want to see things in the same order as I saw them, start at the bottom and work backwards.

We drove right past the Pentagon. We were not invited in.

Here is the entrance to Arlington National Cemetary.

The Jefferson Memorial.

This is as close as we got to the Capital Bldg. We were tired of walking, and I had a plane to catch.

Here I am in front of that fairly famous place lots of people talk about.

The other side of the White House.

The famous White House view, with a big tent in front of it. Turns out there was a Latin Music Festival going on that evening. Apparently my invitation got lost in the mail.

Here is an overview of the WWII Memorial.

This is the best I could do to capture a part of the Korean War Memorial wall etchings. The reflection from the sunny day got a better image of me than of the wall.

The Korean War Memorial is very haunting. The wall on the far side has etchings of images in it. Very ghost-line.

Some of the golden statues at the back of the Lincoln Memorial.

Here I am at Lincoln's feet.

The Washington Monument, with the Capital Building in the background, as seen from the Lincoln Memorial.

The Lincoln Memorial.

The Vietnam Memorial Statue at the entrance to the Wall.

This is a close up of part of the wall.

Part of the Vietnam Memorial Wall. It took three camera shots to get the whole wall.

Some of the millions of statues in DC.

The Flaming Sword across the street from where we parked on Constitutional Avenue. It was the entrance to the Ellpise, which is a grassy park that is just across from the White House.

The Washington Monument.

Chesapeake Bay CB Meet

2009-10-19T09:44:00.000-07:00

Sunset from our Deck

2009-10-16T10:12:00.001-07:00

Quilt Problems

2009-09-04T12:42:00.000-07:00

Many years ago, my grandmother made me a quilt. Unfortunately, she didn't tie things off correctly, and parts of it are unraveling. She is gone now, and I really want to save the quilt if possible. Of course, I am nowhere near crafty enough for this.

Rachel's Big Adventure

2009-08-19T17:48:00.000-07:00

I went to Camp Taloali last week. It is a fun deaf camp in Stayton, Oregon. My favorite part was ALL of it. My super faves were horse back riding, rock wall climbing, and archery. It is an overnight camp. On Saturday, if you were staying only 1 week, then whoever will pick you up will come around 10:00 in the morning. Around breakfast, we hand the awards out. After some skits, then you get to go home. Sometimes the whole camp goes for 2 weeks, sometimes 3. The way we communicate is by sign language. Some use ASL (American Sign Language), or SEE (Signing Exact English).

New Technology for Deaf/Blind

2009-08-12T13:39:00.000-07:00

Here is an interesting article published in the Seattle Times about new assistive technology for deaf/blind people.

http://seattletimes.nwsource.com/html/education/2009642696_deafblind12m.html

Off to Camp Again

2009-08-10T16:55:00.000-07:00

The girl is practically a jet setter. She has been gone somewhere one week every month this summer. In June she went to Birch Bay with Grandma and Grampa. In July she was off to church camp on the peninsula. Now she is down in Oregon at deaf camp. One of the goals is for her to improve her signing skills, as most of the kids rely on only signing to communicate. This is the highlight of her summer, and she has been looking forward to it all year. As good as she is at verbal communication, I think she just feels like she is getting a break by being around other deaf kids for a while.

Hopefully, when she starts school this fall, she will make friends with other deaf kids who attend the same school. This will be the first time since first grade that she has had other deaf kids around her at school. I know she is looking forward to it.

Rachel's 6 Month Follow-up

2009-07-13T09:31:00.001-07:00

Rachel had her 6 month hearing follow-up for her right ear on Friday.

No surprise that her right ear was still unable to understand any of the words in the booth test. With the ossification, and only having 8 active electrodes, she may never be able to use that ear alone to understand speech. Her left ear has 100% understanding in a quiet environment. The real question was how well did she do in noise. With both implants on, the doctor did the test several ways. With the background babble on the right side and the sentences she was supposed to repeat on her left side she tested 12% below normal hearing. When it was switched, and the babble was on her left (good) side, she tested at 13% below normal. When the babble and main voice were equalized, and both sounds were going to both ears (true bilateral hearing) she tested at only 6% below normal hearing.

The doctor was thrilled with this outcome. She said that it showed that Rachel's brain was really able to utilize her hearing in her right ear even though she couldn't really understand anything in it alone. It also showed that the bilateral hearing was making a big difference when hearing in noise.

We had three things we wanted Rachel to achieve with bilateral hearing that she didn't have with her single implant. Better distance hearing, better localization of sound, and better discrimination in noise. All three of those objectives have been achieved, and she has only had her right implant for 6 months. It would be icing on the cake if she could actually understand speech with her right implant alone, but even if that goal is never realized, she has benefitted immensely from getting bilateral hearing, and we are thrilled with her progress.

checking links

2009-07-01T09:54:00.000-07:00

For those of you who love links and research publications. Many of you frequently ask for the links to the research articles we talk about regarding cochlear implants. And many more of you are asking for research that has already been published. The links below are mostly links to links. Two of the three are overviews of multiple research articles, so you will have to dig further to read the actual research. I have not reviewed most of the research below, and do not hold an opinion on it. I am simply providing links for those of you who want them.

http://www.childrenshearing.org/custom/research_articles.html#psy

http://ccdam.gallaudet.edu/pdf/referencelist.pdf

http://archotol.ama-assn.org/cgi/content/full/130/5/547

School's Out

2009-06-17T16:41:00.001-07:00

The boy has graduated, and the girl's last day is tomorrow. Her desk has been cleared out, and for all intents and purposes, everything is done. Her summer schedule is full. A week at Birch Bay with the grandparents, a week at church camp and a week in Oregon at the deaf camp, and we won't bother to be putting the suitcase away in between. The boy is now working on finding a job and planning for college in the fall. I don't think we will see much of him this summer.

Rachel's speech therapist has noted that her description of her new implant is changing. Not so much chimes and bells now, but still not sounding like normal speech. However, her brain is beginning to lower the pitch so things are not so high pitched sounding. We have noticed that she hardly ever needs us to repeat anything anymore. Her distance hearing has really gotten better also, as well as localization of sound. All the things we were hoping to see with the added bilateral implant. She goes in for her 6 month evaluation with her audiologist next month. We will have a much better idea of her progress then. But I don't need an evaluation to know that this was the right decision, and she is really benefitting from it.

They Clean Up Well

2009-05-17T13:49:00.000-07:00

It was Senior Prom yesterday. The weather actually cooperated, and since spring has been late, the lilac is blooming late too. So it was still in full bloom and the perfect backdrop for the pics.

The boy has good taste, doesn't he?

4 Month Update

2009-05-05T13:44:00.000-07:00

Tomorrow it will be 4 months since Rachel's right implant was activated. She is making slow steady progress. This morning at speech therapy, she got about 60% on all the computer games she "plays", except for one where she got 100%. The program is called Earobics. It is fantastic. There are about 4 "games" she plays with only her new right implant in use. There is an environmental sound game where she has 9 pictures to choose from when an environmental sound is played. Another plays two vowel sounds and she has to choose if they are the same or different from each other. A third game says a two syllable word, one syllable at a time. She has three pictures to choose from. This has been the hardest for her, and she usually has only gotten two out of 10. The one she is best at is the cadence game. It playes one, two, three, four or five sounds, and she has to decide how many sounds she heard. She generally has gotten either 9 ro 10 our of 10 on this one for a while now.

On the other games, she got 6 right today. 60%, even on the hard one where she has to figure out an actual word. This is still a ways from understanding speech in an open set, but it is good measurable progress. She is hearing from that ear, and her brain is making steady progress at making sense of the sounds coming in.

Another improvement is her distance hearing. Over the weekend, I was on the lower level of a two story room with an open living room. She was on the second story balcony in a sitting area. I called up to her, and she answered, even though she could not see me. Before her second implant, this would have been nearly impossible. I'm not sure that she even notices the improvement in her ability to understand sound, but improving she is! I'm thrilled.

My matress is 11 years old

2009-04-24T15:41:00.001-07:00

Eleven years ago, I was at home eating dinner and waiting for the mattress company to deliver the new mattress we ordered. I was also 1 week shy of my due date to deliver our third child. Shortly after dinner, as I was relaxing and watching tv with my oldest, my water broke. Oh dear. My husband was at the gym, and our middle child was playing at the neighbor's house. What to do first? Track down the husband? Call the grandmothers? Coordinate with the neighbor to keep the middle child overnight? No. Call the mattress company.

The terms of the delivery were that it would arrive between 5:00 and 9:00 that evening. I called the warehouse, and got a somewhat snotty man on the phone. I politely asked him if he knew when the mattress would be delivered. He asked me when it was supposed to be delivered. I promptly answered "Between 5:00 and 9:00." He then shot back "Then it will be there before 9:00." I sweetly replied "You don't understand. There are extenuating circumstances here. I am 9 months pregnant, and my water just broke. We will be heading to the hospital VERY soon. So, when EXACTLY will the mattress be delivered?" He was no longer snotty. After a couple of uhs and uhms he asked me to wait just a minute. After a very short wait on hold, he came back on the line and informed me that the delivery people would be there within 20 minutes. "Thank you very much." They were there in 10, and out in 5, and they didn't want me anywhere near them. Apparently their contract specified that they only had to deliver mattresses, not babies.

Rachel was born a couple of hours later. Happy birthday baby.

Two Month Update

2009-03-03T14:23:00.000-08:00

Rachel's new processor has been activated for almost two months now. She had her 5th mapping session today. As I had suspected by her recent progress, her map is getting stable and she is getting much better sound quality from her current map. They only did very minor tweaking today.

Now the real work begins. At first, it is all you can do to keep updating the map to keep up with the brain's need for louder and louder sound input. Now that the map has stablized and is at a level to give consistent quality sound input, she can start putting more effort into making sense of the sounds she is getting. I wonder how long it will be before she can hold a conversation without lip reading, using only her new processor?

Making Progress

2009-02-24T10:28:00.000-08:00

We are approaching Rachel's 2 month post activation date. She was activated January 6th, and March 3rd will be 8 weeks. She has another mapping on that day. She attends weekly speech therapy, and each week we can see a measurable improvement in her discrimination of sounds. She is getting very good at understanding the cadence of speech. How many beats on the drum, how many sylabels in the word, etc... And she is beginning to recognise high pitch vs low pitch sounds.

It can be frustrating in the day to day activities because progress is slow. But she is making progress and that is all that counts. Seeing measurable gains is very encouraging. We are about one mile into the marathon.

Sunset

2009-02-17T08:12:00.000-08:00

There was a beautiful sunset last night. I though I'd share.

Lower Array Not Working

2009-02-03T13:54:00.000-08:00

Rachel had her fourth mapping today. We have been having trouble getting a good map for her lower electrode array (she has a split array). Today tests confirmed that she is not getting any hearing from the 3 electrodes on her lower array, and if the volume is turned up, all it stimulates is her facial nerve. So that array was turned off, and she is left with just the 8 electrodes on her upper array.

This is not the best news, but not the worst news either. The 8 electrodes on the upper array have been double mapped, so they do extra work. The levels have been increased also, so hopefully she will get more useful hearing from that side.

Up to now, she still is only hearing bells and tones, but she is starting to be able to distinguish between a closed set of sounds. We will continue to work with her to help her start understanding the sounds she is hearing from her right side.

She has been amazingly tolerant of everything, and has not gotten frustrated at all. I'm not sure I could be that patient or good natured.

Third Mapping

2009-01-14T10:28:00.000-08:00

Rachel had her third mapping session yesterday. They are kind of boring and tiring for her, but she is doing well. She was able to tolerate the activation of the lower electrode array, and that is a good thing. She got dizzy briefly, but it went away, and now she says it is fine. Adding the lower electrodes will widen her pitch range, and make it easier for her to understand lower frequency tones. Here is a booth test of her right ear, before the lower electrodes were activated.

The shaded area is what is generally considered the speech banana; the area of sound that most speech falls into. While Rachel cannot yet distinguish words with her right ear, the sound is now coming in well enough for her brain to have something to work with. She starts speech/language therapy for her right ear tomorrow.

Second Mapping

2009-01-08T16:04:00.000-08:00

Rachel's second mapping had a hardware glitch. She was given two processors at activation, a pink one and a blue one (her choices). The pink one refused to accept a new map in the P1 slot. (There are four slots). It took a half hour to figure out that the pink processor was defective. Luckily, the blue one works just fine. So the pink one is getting sent back to be replaced, and she got her second set of maps loaded onto the blue processor, and the hearing journey continues...

Activation Day

2009-01-07T13:51:00.000-08:00

Rachel's right ear is receiving signals for the first time in over 10 years. So what is she hearing? Bells. Yes. She describes the sound as computerized chimes and bells. But she is fine with that. She has been moving the map from the quietest setting up and up as the bells get too quiet. She has already gone from her first map to her fourth, and her next mapping session is another day away. For whatever reason, the bells don't seem to bother her. What a trooper.

The only minor set back during yesterday's mapping is that they were not able to activate all the electrodes. Because of the ossification in her cochlea, she received a split array. The upper array has 8 electrodes inserted, and the lower array has 3. When they tried to activate the lower array electrodes, she complained of being dizzy. It could not be isolated to any single electrode, so for now, they have simply left the lower array electrodes turned off. We will see how it goes at tomorrow's mapping session.

This is a long journey, and we are just out of the starting gate. It will be several weeks before we get a good indication of how much she will be able to get out of her right ear, and it can be up to a couple of years to maximize her ability to discriminate sound on that side. But the race is finally started, and for that, I am profoundly grateful.

Surgery Pics

2008-12-20T14:39:00.001-08:00

Bilateral Complete

2008-12-20T08:18:00.000-08:00

It would be a complete understatement to say that yesterday was a LONG day. Surgery was scheduled for noon, and check in was at 10:45. Since it had snowed pretty heavily the day before, and everything was icy, we left early. Luckily the roads were all pretty good, and we ended up getting there about a half hour early. Check in went well, and by 11:45, we were ready. The doctor however, was not. He was behind in clinic, and so surgery was delayed for an hour.

Things got rolling at 1:00. We gave our baby a final kiss, and she headed off with the surgery staff to start the implant proceedure. We knew it would be a lot longer than her first implant, because her second cochlea was ossified. That means it is solid bone now, and the doctor had to drill out the slots that the implant array would go into. He was finished at 5:00, and all that was left was for the resident to close her ear back up.

They got 11 out of the 22 electrodes inserted into the cochlea. I was hoping for at least 16, but half is a ton more than she had before surgery. The really good news is that they got some nerve response during testing. The doctor told us that with ossified cochleas, he normally doesn't see any response at this point. So that was very encouraging. It tells us that at the very least, the nerve is still alive and well, and waiting for input.

The best part is that our little trooper did really well. She sailed through surgery, and was very sleepy, but in a good mood when she got back to her room. No bad pain, and she only had a tiny bit of nausea. She took some water and a bit of cracker, and went to sleep. We will see how she feels today. She is scheduled to come home this afternoon. Dad was appointed to spend the night with her at the hospital, so I headed home and got some sleep myself. I imagine he didn't get so much.

Huge thanks go to Dr. Rubenstein, Dr. Norton, Dr, Sie and all the staff at Children's Hospital in Seattle. They are amazing people who really take great care of our children.

Christmas Candy Links

2008-12-10T09:55:00.000-08:00

CHRISTMAS CANDY
This is remarkable. If you have no particular interest, please pass it on to the bakers in your life. Just click on the name of the CANDY and bam the recipe appears!

2 Minute Microwave Fudge
5 Minute Fudge
7 Layer Bars
Aaron's Buttery Cashew Brittle
Almond Bark
Amanda's Peppermint Creams
Ann's Cream Nut Candy
Bavarian Inn Peanut Bars
Beth's Delicious Fudge
Brownie Fudge Dessert
Buckeyes
Buckeyes
Butter Toffee
Candied Yams
Candy Bar Brownies
Candy Cane Brittle
Candy Cane Fudge
Caramel Krispie Treats
Caramels
Carmel Corn
Carol's Christmas Treats
Chocolate Almond Bars
Chocolate Balls
Chocolate Billionaires
Chocolate Chow Mein Candy
Chocolate Covered Cherries
Chocolate Covered Nuts
Chocolate Covered Peanut Butter Balls
Chocolate Covered Pretzels
Chocolate Covered Pretzels
Chocolate Covered Pretzels
Chocolate Nut Caramels
Chocolate Popcorn
Chocolate Silk Bon Bons
Chocolate Truffels
Christmas Candied Walnuts
Christmas Crackle Candy
Christmas Mice
Chunky Mallow Candy
Cinnamon Hard Candy
Cinnamon Popcorn
Cranberry Nut Fudge
Cream Cheese Candy
Creamy Chocolate Truffles
Creamy Microwave Pralines (Texas Stye)
Crispy peanutbutter balls
Dark Chocolate Fudge
Deborahe's Holiday Chocolates
Disappearing Marshmallow Brownies
Dish of Dirt
Divinty
Dorothy's Peanut Butter/Butterscotch Noodle Cookie
Dreamcicle Fudge
Easy Candy
Easy Divinity
Easy Divinity Easy Divinity Candy
Easy Fudge
Easy Granola Candy
Easy Microwave Carmel
Easy Microwave Fudge
Easy Pecan Logs
English Toffee
English Toffee
English Toffee Bars
Fabulous Fudge
Fake Brittle
Fantasy Fudge
Festive Chocolate Truffles
Five Minute Fudge
Fool-Proof Fudge
Frosted Pecans
Fudge
Brownies
Fudge for One
Fudge Puddles
Georgia Nuggets
Grandma Donna's Nummies
Grandma F's Delicious Fudge
Grandmother' s Holiday Fudge
Hard Candy
Hard Tack Candy
Hazelnut Fantasy Fudge
Ho-Ho Hash
Holly Confection
Honey Comb
J & D's Peanut Butter Balls
Jeanne's Tiger Butter
Jen's Chocolate Meringues
J's Cream Fudge
Kim's Famous Cashew Brittle
Magic Marshmallow Fudge
Mama's Fudge
Maple Rum Balls
Margie's Best Candy
Martha Washington Candy
Martha Washington Mounds
Marzipan
Melting Moments
Melting Moments
Memaw's Reese's
Meme's Best Ever Peanut Butter Fudge
Meringues
Micky's Mints
Microwave Peanutbutter fudge
Microwave Pralines
Milk Fudge
Milky Way Bars
Million Dollar Fudge
Mimi's Famous Fudge
Mocha Truffles
Mom's Mints
Mr. Monroe's Famous Fudge
Mrs. Eisenhower's Fudge
Never Fail Fudge
Never Fail Fudge
No Bake Rum Balls
No Cook Peanut Butter Fudge
No Fail Fudge
Novia Scotia Treats
Nut Mallow Goodies
Nutty North Pole Fudge
Orange Balls
Orange Glazed Pecans
Out Of This World Fudge
Oven Carmel Corn
Peanut Brittle
Peanut Brittle
Peanut Brittle
Peanut Brittle (Microwave)
Peanut Butter Balls
Peanut Butter Balls
Peanut Butter Balls
Peanut Butter Bars-An Elve's Favorite Treat
Peanut Butter Candy
Peanut Butter Candy
Peanut Butter Cups
Peanut Butter Cups
Peanut Butter Fruit Squares
Peanut Butter Fudge
Peanut Butter Fudge
Peanut Butter Fudge
Peanut Butter Snowballs
Peanut Clusters (mircrowavable)
Peanut Krispies
Peanut Patties
Pecan Candy
Pecan Kisses
Penuche
Peppermint Bonbons
Peppermint Bark
Peppermint Bark
Peppermint Bark
Peppermint Wands
Popcorn Cake
Popcorn Cake
Potato Candy
Potato Candy
Potato Candy
Potato Candy
Praline Kisses
Pralines
Pralines
Puppy Chow
Puppy Chow
Puppy Chow
Puppy Chow (for Humans)
Quick and Easy Mini Marshmallow Sandwiches
Quick and E-Z Fudge
Raspberry Fudge Balls
Reindeer Chow
Reindeer Chow
Reindeer Chow
Reindeer Chow
Reindeer Droppings
Reindeer Food
Reindeer Food
Rocky Road
Rocky Road
Rocky Road Bark
Rudolph's Favorite Pecans
Rum Balls
Salt Water Taffy
Sea Foam Candy
Skor Fudge
Snowballs
Snowballs
Snowballs
Snowballs
Snowy Day Brownies
Snowy Divinity
Snowy Pretzels
Spiced Pumpkin Fudge
Stained Glass Candy
Sugared Nuts
Super Peanut Clusters
Treacel Fudge
Triple Layer Bars
TripleLayer Chocolate Bars
Truffles
Truffles
Turkish Delight
Turkish Delight
Turkish Delight
Turtles
Uncle Ferd's Butter Crisp Cracker Candy
Uncle Jack Hallwood's Peanut Butter Fudge
Very Easy Fudge
White Christmas
Willy Wonka Bars
Winter Strawberries

The Kids

2008-11-06T09:07:00.001-08:00

Here is our oldest with her two fur babies. She left the snake at home, thank you very much. Below is our youngest, the spider witch. If you look close, you can see the plastic spiders in her hair. Can I just say yuck now?

Our DS and his girlfriend at homecoming. Its amazing how well they clean up, don't you think?

We are Approved

2008-09-29T11:37:00.001-07:00

Amazingly enough, we got our insurance approval without a fight. We got the letter this weekend. Of course, it is never quite as simple as that. The approval was dated for a 60 day approval starting September 3rd. That would mean that by the time her actual surgery happens on November 12th, the preapproval will have expired. The hospital has been alerted, and will get that little mix-up corrected.

Other than that, we are now a GO for surgery on November 12th. Activation will happen two to four weeks later. Rachel will then have lots of speech therapy and hopefully within 6 months or so we will get a good picture of how successful the implant is. A quick process this is not.

Gotta Love a Cowboy

2008-09-16T16:18:00.000-07:00

Sometimes you just need a visual pick-me-up. I'll share mine.

Surgery Date Set

2008-09-05T15:48:00.000-07:00

The surgery date has been set for Rachel's bilateral cochlear implant surgery. November 12th. Originally we were intending to have the surgery between Christmas and New Year's to avoid any lost school time. Unfortunately, the doctor doing the surgery only has one date per month at the children's hospital. The December date was on my birthday, and nowhere near Christmas break. So we opted for the November date. This should give the insurance company plenty of time to give us their approval. Or disapproval as the case may be. There should also be enough time for the appeal process if they choose to disapprove. The audiology center seemed to believe that I have good insurance, and that it will be approved without fuss. We'll see. So now the hard part begins. Waiting...

sigh

Walks I Didn't Take

2008-09-02T11:08:00.000-07:00

We spent the Labor Day weekend up at the family cabin near Mt. Rainier. While I spent most of the time with my foot propped up, recovering from a nasty spider bite, my husband took lovely walks, taking pictures and enjoying the fresh (cold) air.

Here is one of the prettier pics he came back with.

Sunrise

2008-08-22T08:33:00.000-07:00

Today I happened to wake up and look out the window at the perfect time. I sent my DH outside in bare feet to snap some quick pictures of the dawning day.

Bilateral Baby

2008-08-05T14:44:00.001-07:00

We have been hoping to get Rachel's right ear implanted for a while now. There are issues. First off, she has a shunt on the right side, which is not coming out. That takes up valuable real estate on her right side. The other issue is that her right cochlea is ossified. This means that the hollow fluid filled space is no longer hollow, but solid bone. The ossification on her right side is what caused the doctor to speed up the initial implant on her left side way back when she was a baby. She was the first one year old to be implanted at Children's Hospital in Seattle. Luckily, her left cochlea had just begun to ossify, and the doctor was easily able to slide the electrode array into the cochlea without any difficulty.

The problem with ossification is that in order to insert the electrode array, the space now needs to be drilled out. They have yet to invent a drill that curves like the cochlea does. However, Cochlear Corp has designed what is called a split array internal device. The electrode array is split into two parts. The doctor drills into the cochlea in two places, and inserts the device into the two straight holes created, hopefully getting all the electrodes within the cochlea, or at least getting most of them inserted.

We met with Dr. Rubenstein on Friday, and he feels that A) he can work around her shunt, and B) he can successfully get the split array inserted well enough into the cochlea to get most of the electrodes to be usable. Of course, this is the easy part. There are lots of unknowns. How many electrodes can he get implanted? Won't know till he gets in there and does the surgery. How healthy is the auditory nerve on her right side? See the answer to the previous question. Even if everything goes well and they get nerve response after the surgery, there is no way to predict how well she will do with hearing on her right side. Her brain will have to go through a frustrating and time consuming process of learning what sound is in her right ear. She has been ignoring that ear for almost 10 years now, and it will be a lot of work to get that ear to pay attention. That is if she can even get hearing in that ear. We won't know if she can get any hearing on that side until she actually gets hearing on that side.

Here is the biggie. The success of implants with meningitis kids is hit and miss. Some, like Rachel do real well with them. Others not so much. Ossification is a big question mark in the process. Is it the ossification itself that damages the hearing process with the implant or is it something else that causes kids with ossification to get such poor results? In Rachel's case, we can rule out damage to the hearing center of her brain. We know it is working well. We also know her auditory nerve was in good shape initially. So now the doctors can isolate it down to the ossified cochlea itself or the potential auditory nerve damage. If it turns out that she can get usable hearing in her right ear, that will answer a big question for the doctors. It seems like our little pioneer is at it again, teaching the doctors at the same time as they are helping her.

So now the journey to bilateral hearing begins. Step one is to get insurance approval. We are aiming at surgery for right after Christmas. Hopefully this will be enough time to get through the approval process. I am hoping for easy acceptance, but am gearing up for them to initially deny the proceedure. Let the battle begin.

Bathroom Remodel (still need to paint)

2008-08-01T09:37:00.000-07:00

Here is the view into the bathroom.

This is a close up of the trim at the top.

The third pic shows the tile work, new shower curtain and if you look close, you can see the diamond shaped inlays. Below is a better close up of the inlays.
Last, is a shot of a bit of the new rug, flooring, tub and tilework.

My Baby is off to Camp

2008-07-07T10:48:00.000-07:00

So, Sunday, we took our 10 year old down to Oregon, to Camp Taloali. She will be there for a week. The weather is supposed to be beautiful. There is swimming, rock wall climbing, horse back riding, crafts, T-shirt tye dyeing, and lots of fun. She should get a lot of ASL practice too. I hope she misses us at least a little! I think I need to go suck my thumb now.

Random Thoughts

2008-06-24T16:49:00.000-07:00

I got to participate in a CB Whack event this weekend. I highly recommend it. Apparently however, to be a CB you need to be spawned. This is according to Jenny, who we all know, is the ultimate resource on these things. CBs are powerful. They can change weather, cure migrains, invade many places and put together BBQ grills, all while discussing books. Multitalented people, these CBs.

The Biggest Myths

2008-04-11T10:38:00.000-07:00

The following discussion is specifically about profoundly deaf children. Yesterday on Jodi’s blog there was a discussion about myths and inaccuracies. One anonymous commenter chimed in with a comment about how much they disapprove of implanting babies. I know this blog is aimed at families who are already past this discussion, and are more interested in providing both spoken language and ASL for their implanted kids. However, sometimes we need to go back and visit other issues. Like myths. A common belief that I have encountered is that babies should not be implanted, that the child deserves to make this decision for him/herself. The myth then is that the implant will work as well for older kids and teens as it does for babies. An associated myth is that there is no way to estimate how successful the implant will be with a given individual, or that there is not enough information available to make an informed decision on the best age to implant your child. WRONG. On all counts. While it is true that you cannot guarantee results prior to implantation, there is plenty of information now to get a very good idea of how well the implant will work. It is not the same for everyone, and takes into account how much residual hearing you have had, how good your verbal speech is, what your history is, how old you are and how determined you are, among other things.

Last week, my family attended a seminar on early language acquisition, put on by Cochlear Corp. Heather Whitestone McCallum was there, and my daughter was invited to be part of her presentation. My daughter was invited because of her early implantation and subsequent success with her implant and verbal language abilities. We really enjoyed the seminar, and got some good information. Some of that information is relevant to this discussion. Dianne Hammes, with the Carle Clinic and Foundation presented a study regarding the outcomes of four groups of children, grouped by age of implantation. The results of her study showed that children implanted by 18 months of age had near normal speech and language ability, while those implanted after 19 months of age got farther and farther from hearing average the older they got. And the older they were at implantation, the more they deviated from the norm.

There has been quite a bit of research regarding age of implant versus level of acquisition of verbal language that supports that study: see here and here and here. These are just a couple of the many results I came up with when I Googled “Effects of early implantation on speech and language. All of them agree that earlier is better, and that children who are implanted by 18 months of age have a very good chance of achieving speech and language abilities in the same range as their hearing peers. This does not make them hearing. It means that their brains can understand verbal language at the same level.

The important point here is that the brain is an integral part of the success of the cochlear implant. How well the brain can integrate sound is directly connected to the age at which the brain is introduced to sound. By the time a child is old enough to decide for him or herself, they are well beyond the age when the brain can easily integrate sound into meaningful understanding. So the parents who choose to wait and let the child decide, are actually choosing against getting the implant. One way or the other, the parents DO decide. It is far better for them to be intentional in their decision making. I know parents who are now very angry at the Deaf Community because they were led to believe that they could wait, and it would not impact the success of the implant. When they found out otherwise, they felt that they had been lied to by the Deaf Community. This serves nobody. It is more important to keep the lines of communication open, and keep the relationship intact than it is to have the parents follow the “ASL only” ideology without full understanding of all of the options.

The children who will have the highest success with both American Sign Language and the verbal English Language are the ones who are implanted prior to 18 months of age and who are instructed in both English and ASL from birth. This will take dedicated parents and a supportive community.

K.L.

testing a methodology blog

2008-04-01T10:34:00.000-07:00

Methodologies

As many of you know, while I support bilingualism, I myself do not know ASL at all. My daughter, who is almost 10 now, lost her hearing at 7 months of age, and was implanted just after her first birthday. We looked at all the early intervention programs, methodologies and school age programs, and went with Total Communication with Signing Exact English (TC-SEE). NorthWest-School. We started signing as soon as her hearing loss was diagnosed, even before she was implanted. And she picked up signing quickly. She also picked up spoken English after her implantation, and became primarily oral by the time her second birthday came around. We continued with TC and she entered a private TC school at age three. By age four, her receptive and expressive verbal language was above age level average for hearing kids. And her signing was just as good. Eventually she was mainstreamed, and the signing was dropped, because she simply didn’t need it. Her implant really does work that well for her. However, she is good at signing and we don’t want her to loose that. So she will be learning ASL starting this summer. All that having been said, the question remains, why didn’t we just start out with bilingual ASL and English?

There are primarily two reasons we went with a TC program using SEE instead of ASL. The biggest reason is that there were absolutely no ASL programs that included speech. Sure, if you wanted some speech therapy included, they would bring in a speech-language pathologist (SLP) once a week for a one hour session. But the TC program with SEE had all teachers and kids say and sign everything. All the time. It was a huge difference. And it had more than 20 years of test scores of the students showing that academically, it had high standards and results. The other reason was parental support. The TC program had tons of parental support for both the signing and the verbal aspects of the program. The ASL programs had plenty of ASL support, but absolutely none for the verbal aspects. That is one thing the TC program has in common with AVT. Parental support.

There is a general question floating around the blogosphere. “Why don’t the parents just add ASL to their Auditory Verbal Therapy (AVT) lessons, and make their children bilingual?” It would seem to be a simple and economical solution. It isn’t. To understand the problem, you need to understand AVT. Auditory Verbal Therapy. It is exactly what it sounds like. Hearing and speaking. No signing. It is not only how they teach AVT, it is a basic philosophy. They believe that to maximize the auditory pathway growth in the brain, they spend a great deal of time teaching the child to listen and speak. To add sign, means the child might get the information visually rather than aurally. That would not strengthen the auditory portion of the brain. There are plusses and minuses to this method. A big plus is that for early implanted children, it is exceptionally effective. The minus is that it doesn’t work for all children, and it really has problems with older implanted kids. And it leaves those children without nearly enough language. And those children have no ability to communicate with ASL folks in the Deaf Community.

So why do parents use this method? Parental support is a big reason. Proven results is another. So how do we promote bilingual ASL and spoken English for those families who have chosen cochlear implants? It isn’t enough to simply say “Add ASL to whatever methodology you are currently using”. Most methodologies either already incorporate a different form of sign, or are philosophically against sign altogether. And it is horribly unfair to ask parents to choose a methodology and then have them go against what they have chosen to crib in ASL on top of it. Since most parents are hearing, and generally new to Deaf Culture and such, they are understandably overwhelmed. They need to find a single methodology that supports them, and shows proven results. They need to visit the program, see the kids and talk to the other parents. What they need is an ASL English bilingual program that does everything in one program. One that provides ASL classes, speech and verbal language support and an understanding and acceptance of cochlear implants.

There are lots of ASL programs around the country. How many of them have successful verbal language incorporated into the program? If there are any, those programs need to be emulated by other ASL programs around the country. If there aren’t any, then a model needs to be created that can then be incorporated by other ASL programs. A national support system needs to be put into place so each of these programs can support each other. And continuing education can be implemented.

If we want parents to teach their children ASL and English, then we need to give them the programs to do just that. Do you know of a successful program that does this? We’d like to hear about it.

K.L.

Rachel at ASL class

2008-01-29T06:35:00.000-08:00

My daughter and I go to the high school American Sign Language class every year, to talk about cochlear implants. She has a speech she reads, then I talk about hearing, how she lost hers, why we chose the implant for her, and what needs to happen after implantation for her to learn how to hear. I put the camera in video mode and filmed her speech. It is about 4 minutes long.

2007-12-12T06:44:00.000-08:00

I love pumpkin pie.

Pumpkin Pie

2007-11-21T13:00:00.000-08:00

Pumpkin Pie has all the ingredients necessary for a happy life. And it smells like heaven. Just saying.

Cannon Beach

2007-07-15T22:25:00.002-07:00

There is nothing more relaxing than sinking your toes into the fine sand at the beach. One day was beautiful but too hot. The next day was cloudy, windy and too cold. The third day was much better, and just a tad too windy. The day we left for home was perfect. Of course. Here are a few pics of our vacation.

Cannon

2007-07-15T22:25:00.001-07:00

Breathtaking

2007-01-11T11:43:00.000-08:00

I guess this is our reward for the nasty weather and horrible storms that have been passing through. Mother Nature does compensate.

Seattle snow

2007-01-11T11:38:00.000-08:00

It is not often in the Seattle area that the morning dawns clear and cold after an overnight snow. This winter however, is determined to place itself in the history books and memories of the people as they grow old. Remember that winter...

Enjoy the view.

Cherries

2007-01-07T12:54:00.000-08:00

Because pictures are worth 1000 words, I'm just going to post the pics. I got these in my stocking for Christmas. They were too cute not to share.

My own kitchen HEA

2007-01-02T20:16:00.000-08:00

This is where the microwave cart and folding table used to reside.

This is a continuation of the counter next to the sink.

Here is the "after" shot from the same doorway.

All in all, much improved.

More of the old kitchen

2006-12-30T11:06:00.000-08:00

Here's the other view of my lovely old kitchen. Just off the pic to the right is the door where I was standing to take the first picture. What you don't see on the floor below the table is all the stuff stashed there because I don't have a big enough pantry.

My old kitchen

2006-12-27T19:26:00.000-08:00

This is a "before" pic of my lovely pink kitchen. Its kind of hard to tell, but the oven at the far left is also pink.