K.L.s Wondering Mind

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.