Kathy's ALS Blog

My Journey Since Being Diagnosed with ALS




   I was diagnosed with ALS/Lou Gehrig's Disease
        in December 2005.  To read about my initial  
    diagnosis, 
please start by scrolling to the
                        bottom of this site.

 Feel free to submit a comment to me
whenever you visit this page.

 

       Thanks for stopping by!

Letters From Mom


My Mom was a single parent and barely nineteen years old when I was born. She wrote me letters when I was baby - something that inspired me to do the same for my daughter. I can't believe she was mature enough to do something so special for me. They are incredibly precious to me particularly, because she is gone and isn't around for me to talk to about motherhood and my own sweet daughter. 

Here is one of her letters. I plan to share more.


Courtney Lee,

Hi, I'm going to write you now to let you in on a few facts about yourself as an infant.

On August 10, 1974, I brought you home. Grandma came and picked us up at the hospital. She stayed with us a couple of nights. The first day with you was a great occasion. You see, I went through quite a lot during my pregnancy since I was unwed. You had finally become my baby and no one else's. You didn't smile much, oh you were so tiny. At the hospital, you drank five ounces before we went home. Grandma did most everything for you as I was supposed to rest. You were real good though. You only woke two, maybe three times during the night and you never cried. The first time you really cried was when you went to Dr. Becker for your two week check-up. All that was done was I took all of your clothes off and you didn't like that at all. I was assured I had a perfectly healthy baby girl. When the nurse tried to take a blood test out of the heel of your foot I had to sit down because I almost fainted. Your first urine test was ruined because you pooped in it after you drank four ounces of water. The first doctor's appointment was a real experience. He held you in the palm of his hand. Maybe I should say your tummy. And here I was so careful.

You came home and all you did was eat and sleep. You gradually began to kick your legs a little more. You cord fell off at one and a half weeks. You even started to recognize me. You would laugh all by yourself when you looked at Humpty Dumpty, but wouldn't laugh when I tried to get you to. That was when you were about one and a half months old. At six weeks, I put you in your crib in my room. Then we moved so I put you in your own room. From two to three months you really started to come alive. At three and a half months you started to recognize me if I walked into your room. And you just adored Uncle Robert. At two months, you would laugh at me. You love to hear stories.

Right now you are almost four months old. You seem to sleep more now than ever. At six weeks you started to sleep all night. And you have ever since. You've turned over twice, but that's all. Pretty soon you'll be turning over all the time. You're growing so fast now. Last night in bed you turned your head from side to side so many times you have chapped cheeks. Rosy Red is what I call you. I also call you Punkin. Uncle Robert calls you Tourtney. He thinks that's cute. I only hope you don't think that's your name. Well, I'll stop now. It's 12:00 p.m., November 25, 1974.
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Posted by Courtney at 1/3/2011 9:45 PM | View Comments (2) | Add Comment | Trackbacks (0)
Your First Granddaughter

Baby Elyse in Her Room - Three Days Old

On September 12, 2010, we got an opportunity to have access to another part of you. Your first granddaughter, Elyse Kaylee, was born. When I found out I was pregnant last January, I was elated and nervous. I was frightened during early pregnancy as the risk of miscarriage is so high. I dreamed of you every night for two weeks. They weren't scary or sad dreams - we just spent time together laughing, talking and hanging out. I absolutely believe it was your way of comforting me during that overwhelming time. We made it safely through that first trimester and soon we were sharing our exciting news with family and friends.

I got very scared as my due date approached. Not only have I never handled pain well, you had serious issues during labor with me. You suffered from eclampsia - convulsing during my birth, which led to you being in a coma for three days after I was born. When you first awoke you were blind and weren't able to see me right away. Eclampsia can be genetic and I was watched closely. However, my blood pressure was excellent throughout my pregnancy and my physicians had little concern. I did end up having blood pressure issues during my birth. My blood pressure went very high and the baby's heart rate was very low. Neither of us liked labor, but fortunately, as soon as your dear granddaughter was born - all was well. I know you were right there with us during that frightening time.

Your dear granddaughter is so beautiful. She is amazingly healthy and we are already madly in love with her sweet and gentle heart. Mom, I have missed you so badly. I so wish you were here to talk to. I can only imagine how proud you'd be showing off your granddaughter's photos and bragging about how precious she is. You'd be bursting with pride. However, I am comforted knowing my dear daughter has the most special guardian angel. I am absolutely confident you are watching over her.

We love you, Mom. Our daughter was named after the Moms in her life. Her middle name is Kaylee after you, Katherine Lee, my middle name, Lee, and Bill's mother's middle name, Kay. We are so fortunate a part of you is living on in our daughter. We can't wait to tell her all about you. There are some things ALS will NEVER take from us.
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Posted by Courtney at 10/5/2010 12:07 PM | View Comments (4) | Add Comment | Trackbacks (0)
Why I Keep This Site Active
We lost my Mom two and a half years ago to ALS. Not a day goes by that I don't think about her and miss her terribly. I want to remember her as more than suffering from ALS. But, ALS is what took her life. 

Once in a while, I get a request to publish a comment on this site and I'm reminded why I pay the small fee to keep this site up. Sure, I keep it up so I can turn to it from time to time. But, most importantly I keep it active because of the people that stumble across it. For the person whose family member was recently diagnosed and wonders how they'll ever make it through this journey. For the patient who doesn't know what is wrong with them and is fearing an ALS diagnosis. Or for the person who has heard of this disease and doesn't understand its effect on people. 

This blog was created to tell the truth. My Mom shared her feelings and her story. And I shared mine. I do worry that I'll scare people finding this site. ALS took my Mom away from me - we didn't have a typically "happy" ending. However, I don't know if I can ever explain or understand myself how in many ways she changed for the better after her diagnosis. For her last year and a half with us, we got to see a woman who had this new hunger for life. She didn't want to face the reality of the fatality of her disease and while that worried us at times, in the end it made me so proud. My Mom took her last breaths as a fighter. While I am haunted by her death, I am comforted by her memories. These days I dream of her often. She is happy, she is calm and she is love. 

We will be together again for I know she's with me now. That I know for sure.
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Posted by Courtney at 2/14/2010 10:13 PM | View Comments (17) | Add Comment | Trackbacks (0)
The Words of our Story
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Posted by Courtney at 7/19/2008 11:20 AM | View Comments (4) | Add Comment | Trackbacks (0)
Mother's Day

Happy Mother's Day, Mom! Here's my message to you.

 

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Posted by Courtney at 5/11/2008 9:53 PM | View Comments (2) | Add Comment | Trackbacks (0)
Merry Christmas, Mom!

Merry Christmas, Mom. I love and miss you very much. It is hard not to think of you constantly this holiday. I am praying you are happy and healthy and keeping busy as an angel to all of us.

Love,

Courtney

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Posted by Courtney at 12/25/2007 8:06 PM | View Comments (1) | Add Comment | Trackbacks (0)
Finally a Grandma

and She's Sending Her Love Down From Heaven



Mom was so excited last Spring when she found out Corey and Keri were having a baby. As you can imagine, it was also difficult for her as the terrible disease progressed to realize she would never be here to physically hold her first grandchild. I sadly remember the words she used in a scrapbook she made for me just last Christmas: "I DO look forward to holding the babies, smelling how sweet they are, watching them grow and being a part of their lives."

On October 16, 2007, we welcomed Carson Lee Wallis into the world. I was fortunate enough to be there as this wonderful life began just as I was with my mother just a few months before when she left this world. We are sad Mom isn't with us and with Carson as we know she would like to be - but she IS a part of his life and ours. She was definitely there with us that day when he was born. As Aunt Sue said, "Court, just say hello to your Mom when you get to the hospital - because she is definitely there. You know she wouldn't miss this!"

It is so wonderful to get to experience the joy only a new baby can bring, but it does make us grieve to not have her here to share it with us. But, we are consoled to know that she is Carson's grandmother. She can't buy him outfits, babysit or brag - but she is a huge part of who he is. She can't do all those things - but we can. We will love Carson as Mom does and we will get to tell him all about her one day.
 
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Posted by Courtney at 11/11/2007 10:43 PM | View Comments (3) | Add Comment | Trackbacks (0)
Mom Now Has a Final Place of Rest

and She's Sending us Dragonflies...

Four months after Mom's passing we now have a place to go be with her. Her remains now lie in a beautiful rose-colored bench at Woodlawn Cemetery in Lacey, WA. It is on the left-side of a path toward a large cross - for those of you who'd like to pay her a visit.



It is a beautiful bench, but of course, was another difficult milestone for all of us. On a clear day, she overlooks a beautiful view of Mr. Rainier as also pictured on the front of the bench. Here is a closer look.



The bench arrived when I was on a trip to New York. The morning after I returned home, Bill and I went to the cemetery. I was really nervous to see it - but as we walked up to it there were three dragonflies on the top of the bench. Two flew away as we walked up, but one wouldn't leave. It stayed on the top of the bench and I even took a picture of it. Before I pulled out my camera as I was brushing away tears Bill said, "Let me get that dragonfly off before you take the picture." I said, "No... I don't know. Maybe Mom wants it there." I know I'm kind of weird that way, but I found this story about another dragonfly found after someone's death and a wonderful story about its meaning. I thought it was really something and thought you'd like to read more. First, here is a better look at the dragonfly that wasn't remained sunning itself on the top of Mom's bench.

 
 

Saints and Dragonflies

By Peggy Quesnell

I believe that St. Mary’s Parish/School Community, the City of Moscow, Moscow High School Bears’ sports teams and the University of Idaho Vandal athletic teams all have been very blessed to have had a “saint” live among them, touching their lives.

Sister Mary Incarnation Menager, osu, an Ursuline nun, lived in Moscow for over forty years, dying in 1988 at the age of 92. It is fitting that Sister Incarnation was born and died in the month of May, since it is during this month that the mother of Jesus is honored. Sister had a deep devotion to Mary as witnessed in her distribution of green scapulars. If one had any special needs, she would give you a green scapular advising you to tell Mary all your needs. She always assured you that she would pray too. I know many businesses in Moscow have green scapulars buried on their property, even to this day.

Sr. Incarnation was better known by a nickname she had received many years before, “Sr. Inky”. At her death, Moscow was sent a small “miracle” to tell us both the joy and truth that was Sr. Inky’s. I would like to share with you my personal recollections surrounding her burial services.

The rosary for Sister was the night of May 13th. I arrived at the church to sing with the music group. As I reached out to grab the door handle, I noticed that there was a large dragonfly sitting right on the handle. Now I have never been a fan of bugs, so I yelled! As I walked into the church, I told our pastor, Father Dennis Wassmuth and David Hutton, the head of the mortuary: “Yuck, there’s a dragonfly on the door of the church!” Fr. Dennis’ response was, “Well, that’s appropriate.” Looking at him rather strangely, I proceeded upstairs to the choir loft.

The celebrant of both the rosary and Mass was Sister Inky’s spiritual director, Fr. Jim Worsley. During the vigil service, he told the wonderful allegory about the metamorphosis of a water bug to a dragonfly!

The story goes that the water bugs had noticed that whenever their friends would float to the surface; they would suddenly disappear never to be seen again. Now they weren’t sure what was beyond that magical surface. So they agreed among themselves that the next one to go to the surface and disappear would come back and tell the others what it is like “out there”. Well, it happened that their leader was the next to go. After the leader “woke up to the fact” that he was now a beautiful dragonfly, he was ready to go back and tell the good news to the others. But as he looked at his friends in the water, he realized that it was impossible for him to return. Further, he realized that even if he could return, they would not recognize him in his changed state!

That allegory, along with the dragonfly sitting on the door handle, truly touched everyone at church and reminded us of the mystery of resurrection. And would you believe, that dragonfly on the church’s door handle stayed the entire time that Sr. Ink’s casket remained in the church! Not only that, guess what was on the headstone, waiting for us in the cemetery? The dragonfly!

I have reflected often on that wonderful experience of the dragonfly at Sr. Inky’s funeral. And I truly believe that Sister sent that dragonfly then as well as the very many times she continues to send them our way to let us know that she is praying for us. I loved the dragonfly she sent me right after my son, Tony, was born in 1995. Our school had a dragonfly sit on the back wall for a week last spring where the proposed new addition for the school is to be built. On the first day of the school this year, while our principal, Sister Margaret, was offering a prayer, a dragonfly flew over the school children. A dragonfly even visited us in our lunchroom this fall! These are just a few instances of dragonflies in our midst!

Sister Inky truly loved God, her Ursuline sisters, St. Mary’s community, the City of Moscow and her beloved Idaho Vandals. We are glad that her presence is still felt among us.
Have you seen a dragonfly lately?

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Posted by Kathy at 11/11/2007 10:18 PM | View Comments (2) | Add Comment | Trackbacks (0)
Happy Birthday, Mom

I miss you and I can't believe you are gone. I was supposed to make you something chocolate for your birthday or that banana split sundae cake you love so much. I had meant to plan something special, but I think we all felt that we needed to just try to not make it too hard - so we just made it a normal day. But, hopefully you know how much we think about you every moment.

Exciting things have been happening in my life. A new job, beautiful new home, nephew on the way, Sue and Scott moving to Washington... I feel so fortunate, yet it seems bittersweet when I can't share it with you.

I have your wedding diamond around my neck and close to my heart. It looks so beautiful in the new pendant - I know you would love it. Dad got a new truck. You wouldn't be able to help but smile if you saw him in it. It is so ridiculously tall, but it makes us smile so we can't complain. He gets this faraway look sometimes and we know it is when he is really missing you. So, if a big truck brings him joy - it makes us happy too.

Dad's taking good care of Mati. She has really bonded with him and she hangs out with him in the yard and the shop. She gets really dirty, but she doesn't mind. She just likes being with her Dad.

I really am doing OK and I remind myself that you are finally healthy again. I just get to feeling selfish and want you here. Its hard not having a Mom in the same way others do. But, I try to remind myself that you are still with me - just not in the same way. I have also taken advantage of other "Mom"s in my life that have really been supportive to me. I know you are smiling down when you see them loving me and giving me "Mom" advice.

You'll always be such a huge part of me. I miss you terribly, but feel fortunate I had you in my life for as long as I did. I love you very much.

Your daughter,

Courtney
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Posted by Courtney at 7/29/2007 7:52 PM | View Comments (1) | Add Comment | Trackbacks (0)
Friends Say Goodbye to Kathy
Message From the Bunco Babes -

The Bunco Babes had a final goodbye for Kathy on 6/31/07. We laughed, cried, looked at pictures and at the end went outside to release the red balloons that we had all written notes to Kathy on. We held hands and prayed then released the balloons. We watched them until they just about disappeared. At that spot, a rainbow appeared..... We believe she read the balloons and sent us that rainbow to let us know she was there. We will always love and miss her.

Bunco Babes

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Posted by Courtney at 7/11/2007 8:12 PM | View Comments (1) | Add Comment | Trackbacks (0)
Goodbye to Our Wife, Mother, Daughter, Sister and Loved One
KATHERINE W******

Katherine "Kathy" Lee W****, 51, passed away on Tuesday, June 12, 2007, at home with her family at her side after a year-and-a-half battle with ALS/Lou Gehrig's Disease. Kathy is survived by her husband, Jay W****; daughter, Courtney W****, and future son-in-law, William D****; son, Corey W****, and daughter-in-law, Keri W****; mother and father, Jo and Olen W****; brother, Robert R*******; sister, Susan (R*******) *******; and many other family and friends who loved her dearly.

Kathy was born on July 29, 1955 in San Diego, California, but spent the majority of her life in Olympia, Washington; She graduated from Timberline High School in 1973. She worked for the State of Washington for over 20 years, primarily for the Department of Labor and Industries in Tumwater, Washington.

She loved cats and dogs, especially her poodle, "Matilda"; Bunco nights with her girlfriends; trips of any kind; Taco Time; eating home-cooked meals at her mother's kitchen table; plays and musicals; going to the movies; taking care of her family; talking on the phone; reading; craft projects, including scrapbooking and sewing; singing in the car to her favorite easy-listening music; great-smelling lotions; and cuddly down throws.

Kathy courageously fought this disease and taught us so much about faith and hope. We are comforted to know she is finally in a place where her body works again and she is now at peace.

Services will be held at the Woodlawn Funeral Home, 5930 Mullen Road S.E., Lacey, Washington 98503, on Saturday, June 16, 2007, at 4:00 p.m.

For more information, please view Kathy's website at: WWW.KATHYSALSBLOG.COM. Donations may be made in Kathy's name to the ALS Association, Evergreen Chapter, 19110 66th Avenue South, Kent, Washington 98032.
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Posted by Courtney at 6/14/2007 10:28 AM | View Comments (10) | Add Comment | Trackbacks (0)
Kathy is Now Our Angel
Message From Courtney-

At 2:45 p.m. today, June 12, 2007, Mom passed away with Dad and I at her side along with a wonderful massage therapist from hospice.

We had just moved her back to her bedroom to get her more comfortable (she has been in the living room). She was really struggling to breathe and anxious. We gave her medication to keep her comfortable and she continued to struggle to breathe. The massage therapist was very loving with her and just layed hands over her in love. We had soft music playing and she encouraged me to tell Mom anything I had left unsaid. She asked if she were a Christian. I held Mom's hand and sat next to the bed as we watched her begin to breathe more slowly. I looked from her to the hospice therapist's face and finally asked, "Is she gone?" She said, "No, but it is close." I ran to get Dad. He came into the room and we held her and told her how much we loved her and that it was okay to go. She finally stopped breathing.

An outpouring of family came out to the house. The neighbors brought over a huge meal to feed us all. I have felt so loved today by family and friends, it is just overwhelming.

Mom will be cremated at Woodlawn Funeral Home in Lacey. We meet with them tomorrow to plan arrangements and I will keep the blog updated with service information. Thank you all for your love and support during this difficult journey. Our comfort now is to know Mom is no longer suffering. None of us ever wanted that and with that, we can have some peace. I ask for your prayers of comfort for my Dad as I know this has truly broken his heart.

UPDATE: Services will be held at the Woodlawn Funeral Home at 5930 Mullen Rd SE, Lacey, WA on Saturday, June 16, 2007 at 4 p.m. 
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Posted by Courtney at 6/12/2007 9:06 PM | View Comments (13) | Add Comment | Trackbacks (0)
Medical Update

Message from Courtney -

Mom wasn’t able to make her 6/6/07 appointment in Seattle. Emotionally and physically it was too difficult for her. I spoke with Sonja Zimmer, the nurse from the ALS Association and Dad was able to talk to Dr. Ravits. Dr. Ravits confirmed Mom is in the end-stage of ALS. We learned that much of her difficulty is from the buildup of CO2 from her lack of oxygen. This is causing the swelling, sleepiness, disorientation, and even her itchiness.

We have gotten her local physician, Dr. Greg Carter involved. Dr. Carter has suggested that we use more meds to keep her comfortable. Sonja encouraged this as well. Dad told Dr. Ravits he had to go to work for three days next week starting next Friday. Dr. Ravits told him he didn’t know if Mom would make it that long.

Needless to say, this is heartbreaking for us. We have known for so long what is coming, but it is always hard to hear. Dr. Ravits wasn’t able to see Mom in person to make this sort of diagnosis, but he has seen so many ALS patients and knows very well what happens near death. However, we know she may have more time, but we so appreciate his honesty and preparing us for what may come.

Please continue to hold Mom in prayer. “For where two or three are gathered in my name, I am there among them.” Matthew 18:20

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Posted by Courtney at 6/9/2007 10:17 AM | View Comments (3) | Add Comment | Trackbacks (0)
Tough June Start

Message From Courtney -

Hospice care began for Mom in early May. The nurse comes Tuesdays and Thursdays to check on her vitals, adjusts medications as necessary and ensure she has all the equipment and other things she might need. The hospice bath aide comes Monday and Friday. She has also had volunteers come to be with her to give Dad a break. One of the first things the nurse did was insert a catheter as the frequent trips to the bathroom were getting very hard on Mom.

Mom has limited mobility left in her right leg and right hand, but we have noticed the strength diminishing quickly. Because of the decreasing mobility in her right hand, Mom rarely writes any notes at all. Her main communication is grunts and small hand motions pointing to what she needs. She spends all of her time in her lift recliner. She has a hospital bed with a very nice Select Comfort mattress, but she feels more comfortable being in her chair. Dad sleeps on the couch as she needs him throughout the night - feedings, stretching or just help with scratching an itch.

Many of you have asked if she is in pain. She is not, but she is uncomfortable. As we have learned, it is the respiratory problems that are fatal with ALS. Mom’s breathing is sounding pretty awful. At its best, she breathes quietly, but at the worst, her breathing sounds like snoring. She has a lot of excess mucus that can be somewhat helped with a suction machine and “cough assist”, but it causes her a lot of difficulty.

The nurse came out yesterday and was worried by her condition. She had slept all day yesterday and was really "out of it." I am with her now and she is in the same condition. She wakes briefly, but seems very disoriented and will lift up her chair when she struggles to breathe, but once it settles down, she lowers it again and falls back to sleep. Until the last couple of days, she had filled her time with watching Ellen (her favorite talk show), soap operas Passions and Days of Our Lives or just about anything on the Animal Planet - mostly Emergency Vets. Since yesterday, she has slept so much she hasn’t even watched TV.

Dad is doing such a good job. He is so lovingly attentive to Mom and it is so wonderful to watch him with her. He understands all of her grunts and motions and seems to always know just what she needs.

Many of you have asked what you can do. This is very trying on my Dad and any help from family and friends to come out to give him a break is much appreciated. Just call Dad ahead and plan a time that works for you. It can even work to come over even if Dad doesn’t leave – it gives him a chance to get things done around the house or yard. Also, any home-cooked meals for Dad are appreciated.

We so appreciate your thoughts and prayers. Mom’s next appointment with Dr. Ravits is this Wednesday, but we are not sure at this point if she will be able to make the trip. We will keep you posted.

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Posted by Courtney at 6/1/2007 12:08 PM | View Comments (3) | Add Comment | Trackbacks (0)
Mother's Day Message to Mom

I submitted an entry about Mom in The Olympian's on-line Mother's Day gallery.

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Posted by Courtney at 5/13/2007 10:19 AM | View Comments (3) | Add Comment | Trackbacks (0)
April Medical Appointment


Update From Courtney -

 

Dad, Keri and I went with Mom to her ALS Clinic at Virginia Mason in Seattle.  It was a long appointment and very tiring for Mom.  Her breathing is down to 17 percent from 37 percent in January.  Fortunately, she hasn't lost any more weight.  Dr. Ravits was surprised by her progression just since January.  He ordered hospice  for Mom beginning immediately.  This was very hard on all of us; however, we are thankful for the support to Mom.  Dad is off work full-time starting next week and the help of hospice and respite care through the ALS Association is a tremendous blessing.  If you ever want to come out for a visit, just give Dad a call and he’ll let you know if it is a good time.  Again, thank you for your continued thoughts and prayers.  I will keep this site updated more regularly.

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Posted by Courtney at 4/26/2007 7:37 PM | View Comments (6) | Add Comment | Trackbacks (0)
April Update


Message From Courtney -

It has been a while since we posted an update on how Mom is doing.  I thought I better just take care of it myself as she rarely gets on the computer anymore. 

She now has weakness in her right hand as well, so it is getting more and more difficult for her to write to communicate.  Her left leg is getting progressively weaker.  She isn’t really able to walk, besides transferring herself from her wheelchair to her “lift” recliner.  She is no longer able to eat, now relying completely on supplements through her feeding tube.  Her breathing is continuing to be troublesome; she uses her Bi-Pap machine some nights when is having particular difficulty.

Grandma Jo has been coming out to be with Mom Tuesday through Friday while Dad is at work.  She has friends and a wonderful neighbor who visit her on Monday and Friday (when she allows).  Even with her health issues, her privacy remains important to her and sometimes even with her struggles; she still treasures her time alone.

Mom and Dad went up to Woodinville last weekend and traded in their Volvo wagon for a conversion van that will transport Mom in her wheelchair.  It has all of the “bells and whistles”.  The van lowers to the ground to accommodate easy loading of the wheelchair.  This will make it much easier for her to go places.

Starting May 1, Dad will be off work full-time to stay home and help to care for Mom.  He has really been doing a great job.  Although not without struggles during transition, he has resumed so well many of the duties Mom has always taken care of.  He does the grocery shopping, arranges medical appointments and most importantly, helps take care of Mom’s daily needs. 

My parents have a wonderful neighbor who has been very helpful - from pitching in to sign off on medical supply deliveries to bringing wonderful meals over to Dad.  I was over there last week when he was enjoying barbecued ribs, asparagus and scalloped potatoes!  Their generosity is so inspiring.

Your continued support of Mom and all of us is deeply appreciated.

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Posted by Courtney at 4/13/2007 8:44 PM | View Comments (4) | Add Comment | Trackbacks (0)
Las Vegas Trip - February 2007
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Posted by Courtney at 2/11/2007 8:18 PM | View Comments (2) | Add Comment | Trackbacks (0)
January Update

 

Message From Kathy -

 

On Wednesday January 17, 2007, Courtney drove me up to Seattle and we stopped at Jay's shop so he could drive us to Virginia Mason Hospital and then my car would stay in the shop.

 

We saw the respiratory lady who tested my breathing.  My numbers went down to 36 or 35.   Which if the numbers goes below 50 then they worry about it.  She told us that when we were done the team would make decisions.

 

Jay stopped by.

 

Mary from ALS talked to us about insurance and what the ALS group would cover 96 hours of respite care for the year.  So I am looking to get it.

 

We had a little break.  Jay stayed with me.  Court went down to bring back something to eat.  Jay left after she got back.

 

Then we saw speech and nutrition.  Speech was concerned about getting my Dynavox (the machine that will say what I type.)  Jay has a lot of trouble hearing any of the voices.  So I haven't used it much.  I write down what I want to say.  Nutrition was concerned because I have lost so much weight.  They don't want us to lose weight.  But I told them I am now at my goal weight.  But instead of losing fat I lost more muscles.  We were wrapping up and we heard THIS IS THE SEATTLE FIRE DEPARTMENT AND EVERYONE NEEDS TO EVACUTE AS THERE IS A CAR FIRE IN THE GARAGE.   We picked up our stuff and we went out to the hall. 

 

I was in a wheelchair and it was our first time out in the wheelchair.  The evacuation was a mess.  It seemed they didn't know what to do with us in wheelchairs.  However, Mary showed up and an elevator opened and four of us got in.  I was in a manual chair and the other lady was in an electric chair; her husband was with her and Court was with me.   Then we had to get off at the floor for the sky bridge was.  Then it got real smoky.  Then we got into another elevator and it took us to the lobby.  So Court pushed me as fast as she could.  We got outside and then she pushed me up the hill for 2-3 blocks and Mary showed up again.  When we stopped Court called Dad and he called Pat who drove my car to get us.  We were so cold I turned the heat up.  I heard from Jay that Pat was very hot but he didn't want to say anything.  If he would have we could have turned his side off.

 

We went home.

 

Friday, January 19, 2007, we returned.  First we saw PT and we went over my neck brace which was too high so they gave me a lower one.  I had just told them it was Jay's birthday and I asked if they would sing Happy Birthday for him.  He walked in right when she was reading my note.  So the three of them sang him.  Then they showed me how to get up from the floor.  Not that I could do it.  But we also talked about Life Alert so I will look into that.

 

Then we met with Dr. Ravitz and a resident.  Dr. R explained to the resident what ALS does while he used me as his project.  Then he answered our questions.  He told us that I had bulbar symptoms (my speech, swallowing and now my mouth won't open very far) and he told us that I was progressing fast and I broke down. 

 

My heart is breaking because I probably won't be able to see Courtney get married.  As most mom and daughters we talked about what she wanted at her wedding and the wedding dress she wants.   After she got home after going to a wedding once, she told me she wanted a wedding like that one except she didn't want the ice sculpture.   We laughed so hard.  Courtney and I have been very close and we still have close moments.  I love her so much I want her to be happy and that she could have the wedding of her dreams.

 

I am very happy with Corey and his fiancée Keri.  They make a wonderful couple.  They are counting down the days till March 3, 2007.  He will look very handsome on his wedding day!

 

I wish all the folks that read this to have a very happy and healthy life.  Love, Kathy

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Posted by Kathy at 1/30/2007 6:50 PM | View Comments (2) | Add Comment | Trackbacks (0)
December Update

 

Message From Kathy -

 

I had an ALS Clinic appointment at Virginia Mason in Seattle which I had to cancel due to the weather (it was the week of snow and ice).  However, on Monday December 11, 2006 I was seen by Dr. Carter at the Olympia MDA clinic at the Emilie Gamelin building of Providence St Peter Hospital.

 

He renewed my medications and changed two of them.  He changed my Effexor extended release to the same medicine, just not an extended version.  He also changed the medicine that was to help with drooling to a different medicine.

 

He read my six pages of my handwritten statements and questions and then examined me.  

 

When he looked at my left arm he said, “Oh Shit.”  He then explained that ALS causes the shoulder to come out of the joint but not enough to hurt.

 

I asked about my left leg and he confirmed my suspicions.  I now show weakness in my left leg.  We talked about my falls* and he agreed that they are likely caused by the weakness in my leg, not from being unable to balance due to the weakness from my left arm.

 

I asked him about my neck and I have weakness there too.    So, he has prescribed a soft collar for me.

 

*Message from Courtney - As some of you already know, Mom has fallen several times and recently took a fall in the parking lot at the mall.  She fell face first and got some minor bruises and a cut to her eye.  She was taken by medics to the emergency room where she was treated for a mild concussion.  She is doing much better, but caused quite a scare for all of us.

 

It is very important for Mom to keep her independence which we are trying to balance while also ensuring she gets the support she needs.  The next ALS Support Group meeting is in January at 6 p.m. at the Lacey Community Center on Pacific Avenue.  They are the second Tuesday of each month.  These meetings are open to all friends and family of ALS patients – as ALS affects us all, not only the patient.  I do hope you can join us.  We hope to discuss some strategies to help Mom and Dad out – and then talk to Mom and make sure they work for her.

 

Also, Mom’s speech is now affected to the point we aren’t able to understand her.  However, she is great with a pen and pad though and is still trying to learn her machine that will speak for her.  She also text messages on her phone and e-mails and instant messages (when she has power!!). 

 

She remains in great spirits and is really enjoying this holiday season.  We thank you for your continued prayers and support.

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Posted by Kathy at 12/20/2006 10:49 PM | View Comments (1) | Add Comment | Trackbacks (0)
September 30th Walk to D'Feet ALS
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Posted by Courtney at 10/5/2006 9:23 PM | View Comments (3) | Add Comment | Trackbacks (0)
SURGERY & AUCTION UPDATE

  

Message from Courtney –

 

On Tuesday, August 22, 2006, Mom had surgery at Virginia Mason in Seattle to get her feeding tube.  We knew it was coming, but didn’t know it would be scheduled so soon.  The surgery went very well.  She stayed overnight and had several uncomfortable days, but is doing quite well.

 

The good news is that it is now done she can now get the nutrition she needs that is so important for her health.  The bad news was that the surgery was so close to the auction and dinner date (August 26), she just wasn’t feeling well enough by Saturday evening to attend to see all of her family and friends.

 

Nonetheless, we all surged ahead and made the best of it.  So many friends and family came out to the senior center in Lacey.  We had friends that had traveled from Spokane, Portland, Seattle...  Everyone pitched in.  Of course, the “Bunco Babes” – who made everything happen had all of the details covered and “woman”ed the front door and dished out all the food in the kitchen. 

 

Folks were incredibly generous with their bids on auction items.  One very special friend of Kathy’s donated the money to pay for all of the food for the evening.  Another friend did some bidding over the phone and ended up contributing a very generous amount.  The support was more than financial – the whole evening you could hear people talking about Kathy, how much they missed seeing her there and how glad they were to be there.  I have heard from many of you who couldn’t attend who said you thought of her many times that night, prayed for her and the auction and couldn’t wait to hear how it all went.

 

Thank you to all those who supported this auction in so many ways:  donating auction items, submitting financial contributions, making auction purchases, attending the auction to show your support, and helping out at the auction (setup, cleanup, etc.).  A HUGE thanks to Manon, Sharon and the entire BUNCO gang for making this all happen.  We appreciate it so much!

 

It was a wonderful night in support of my Mom and I am so thankful to each and every one of you who participated.   Please view the slideshow below to take a peek into our late August evening!

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Posted by Courtney at 9/6/2006 9:21 PM | View Comments (1) | Add Comment | Trackbacks (0)
Auction & Dinner Slideshow
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Posted by Courtney at 9/6/2006 9:00 PM | View Comments (2) | Add Comment | Trackbacks (0)
August 2006 Appointment

 

Message From Kathy -

 

Today, Wednesday, August 9, 2006, I went to Virginia Mason.  Jay drove me and I went alone for the first two hours.  I purposely didn't tell anyone I was going as I wanted to do this myself.  What I found out was I have lost seven pounds since May, which I attributed to the heat and my not wanting to eat when it was so hot.  However, the providers convinced me that due to the trouble I have with swallowing I am probably not eating enough.  So, the feeding tube was discussed again.  I was very upset as my mind went wild.  Jay came in right after the physical medicine doctor told me that.  It was lunchtime and we had to wait till I stopped crying for about five minutes before we could go.  When we came back Dr. Ravitz, my neurologist, was there for his time.  He examined me and said that nothing in my arms or legs had changed much.  He did tell us that I have had symptoms in all my extremities all along.  As we are aware, most ALS folks have findings for a very long time before they are diagnosed.  He assured us that the findings are NOT worse. 

 

We then talked about the feeding tube called a "PEG Tube."  He explained that my weight loss of about 10+ pounds since January is a concern.  It doesn’t mean I can’t eat.  I will still eat whatever I want, but the feeding tube will allow me to get all the nutrients I need.  It has been proven that ALS patients do better on a good nutritional diet.  I probably have never had a good nutritional diet.  He said this does not mean I am at the end of my disease.  I can live for a very long time with a feeding tube and if a cure is discovered it can be removed.  So it looks like I will be getting the feeding tube within the next one to two months.  I will probably have it done at Virginia Mason.  I will meet the surgeon, then have the surgery, spend the night, and the next day be instructed how to care for it and use it.  I have asked if I could swim with it.  He didn't know, but I was the second one to ask that! 

 

All in all the day was okay.  Just think I won't have to worry about cooking!  As most of my family and friends have known for the last ten or so years I haven't wanted to cook.  I also won't have to drink Ensure any more.  Ensure is very expensive - $7-$9 for 6 of them.  The supplements are covered under either Medicare and/or private insurance.

 

I want to thank all of my family, friends and those I don't know who have helped with the fundraising, prayers and being there when I need them to be. 

 

Love,

 

Kathy

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Posted by Kathy at 8/10/2006 6:10 PM | View Comments (2) | Add Comment | Trackbacks (0)
Mom's 51st Birthday - July 29, 2006
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Posted by Courtney at 7/29/2006 9:49 PM | View Comments (2) | Add Comment | Trackbacks (0)
L&I Silent Auction a HUGE Success!

  

Message From Courtney -

 

Tuesday’s silent auction at L&I raised over $4,000!!!  It was the largest fundraiser L&I had ever seen.  We are amazed by everyone’s generosity.  It was astounding to see how many gift baskets and other items were donated. It was incredible.   I was able to visit yesterday and was very touched by all that I saw and how much love there is for my Mom.

 

Although she won’t be coming back to work she has many friends that are going to miss seeing her every day and who won’t let her become a stranger.

 

We’ll soon be announcing the date for the larger auction – we’re looking at late August.  More details to come.

 

Again, thank you to every one of you who helped organize the L&I auction, donated items, baked sweet treats, volunteered to man the booth, made purchases, cash donations and for helping make her dreams come true. 

 

On behalf of my Mom and our entire family – we are overwhelmed with gratefulness – thank you!

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Posted by Courtney at 7/12/2006 9:12 PM | View Comments (2) | Add Comment | Trackbacks (0)
Flea Market a Big Success!

 

Message From Courtney -

 

The June 17-18 Flea Market Fundraiser for my Mom was a BIG success!  We raised over $1,300 dollars!  This means the money was raised to get the auction going - date is still to be determined.  AND, enough money was raised to send Mom and Grandma Jo to Las Vegas!  Woo hoo!

Thank you to the BUNCO gals - Bonnie, Jean, Manot  & Sharon for making this happen, donating their items and precious weekend hours!  To all that donated their castoffs and wonderful baked goods including, but not limited to:  Beth, Bevin, Brad, Elishia, Glen, Fred & Francie, Jeannie, Kathy T, Kelly, Sara and Tina.  To all that came and volunteered over the weekend:  Grandma Jo, Peri and Lorie.  And to all the wonderful friends and family who stopped by to shop and visit.  Thank you one and all!  We actually had a great time!

THANK YOU! 

Watch the slideshow below of the flea market weekend by clicking “play.”

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Posted by Courtney at 6/20/2006 11:06 PM | View Comments (0) | Add Comment | Trackbacks (0)
A Look at the June Flea Market Fundraiser
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Posted by Courtney at 6/19/2006 11:29 PM | View Comments (2) | Add Comment | Trackbacks (0)
L&I Word Processing Staff Surprise Kathy

 

Message From Courtney - 

A couple of months ago I got a call from my Mom's friend, Barbara.  She had worked for my Mom over ten years ago when she was the supervisor of the word processing center at the Department of Labor and Industries.  Barbara had just heard of my Mom's illness.  She asked if she thought my Mom would be interested in having everyone get together for a surprise dinner.  I told her she would love it!

So, last Thursday night, May 4 - my Mom showed up at Falls Terrace with her friend, Lorie.  She was very surprised to arrive and see the whole Word Processing crew there waiting for her!

Thank you to Barbara for making this happen and for all of the special women who came together that night. 




Back:  Courtney, Barbara, Beth, Lois, Jeanine, Marcia
Front:  Linda, Kathy & Lorie

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Posted by Courtney at 5/8/2006 10:16 PM | View Comments (3) | Add Comment | Trackbacks (0)
God Works in Ways You Never Expect


Message From Courtney...

This was a message my dear college friend from Sacramento, Alyson McCann, left on my voicemail.  I loved the message and asked if I could print it on Mom's website - she agreed!

Thursday April 6, 2006 - 7:05 p.m.

"Co!  I had to call you because you will be amazed how God works in ways you never expect. 

I'm here here at the high school going to visit a couple of freshmen who are in the concert band.  And, so I thought oh, I'll just go and sit in the front row for a little bit and just cheer them on.  Well, I get here and it is not just a concert, it apparently is a fundraiser for ALS - Greater Sacramento Chapter!  The kids have chosen instead of having their spring concert benefit themselves, to have their concert in benefit of ALS!  I was like that's crazy because that is so Co's mom!  Of course I'm a cheeseball  and I'm sitting here in the audience listening to the kids and smiling at them and just start crying because I start thinking about your Mom.  So, I just wanted to come outside and say hey and you know, God's over here and He's doing stuff here to help your Mom.  So, I don't know how you tell her that.  But, figure out a way!  OK, bye girl!

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Posted by Courtney at 4/6/2006 9:45 PM | View Comments (0) | Add Comment | Trackbacks (0)
April 1, 2006

 

Message From Courtney....

My Mom was diagnosed just before Christmas.  I sought out Cindy at work because I knew she was struggling with her mother's own illness.  Cindy was very empathetic and kindly told me she understood how I felt and was there if I needed to talk.  Unfortunately, Cindy's mother passed away shortly afterward and then her husband unexpectedly died just three days later.  All of us at the office were so shocked and saddened by this news and our hearts went out to Cindy.

That brings me to today.  Cindy has taken her own grief and has chosen to reach out to others.  She e-mailed my Mom recently and introduced herself.  I was really touched when I heard this - I really felt they could be particularly supportive to each other given their own difficult struggles these past few months.  Just last night, Cindy drove out to my Mom's house with a pot of chili and they met for the first time.  I understand they each had a nice visit!

I wanted to share this because in times like these it can feel like everything is going wrong.  However, I have always felt God's hand in this situation and His blessings never cease.  I am so happy Cindy is reaching out in her time of healing and my Mom gets to share in that.  I am hopeful they have been encouraged by each other’s strength.
  
  

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Posted by Courtney at 4/1/2006 7:45 PM | View Comments (1) | Add Comment | Trackbacks (0)
March 25, 2006


Message From Kathy...

I took my Mom on a fundraiser for Relay for Life yesterday.  An early birthday gift.  We caught a bus at 8:30 am, with a lot of women from my agency.  We had a breakfast buffet at Marie Callenders.  Then went to Pike Place Market and spent 3+ hours there.  At 3:30 the bus picked us up and took us to the ACT Theatre where we saw "Menopause the Musical."  This is a very funny play.  Funny as it was it does explain symptoms of peri-menopause and menopause in a musical way.  On the bus ride home we showed the movie "Fireball."  This movie was made in 1948 (I think) and my Mom was in it.  She is one of the roller derby members.  She had to win races on her roller skates to get into the movie.  She told me 3 girls made it, one wasn't able to because she broke her shoulder and the other one's boyfriend wouldn't let her travel to Hollywood.  We got back to South Sound and went to Taco Time for dinner.  This day was wonderful and I am glad to spend time like this with my mother.

The reason I wanted to put this in here, is because my Mom shed tears several times during the day.  If she thought about me having ALS - saw me struggle doing something she cried.  I have told my family that this condition can cause many of us to be mildly depressed and that there is medication to help get by.  I have specifically told my Mom to talk to her doctor.  She told me at Taco Time, after another cry, she would talk to her doctor. 

I also explained to her that I really am doing fine right now.  I told her she taught me years ago that God only gives us what we can handle, and I am handling it.  I told her I think I am doing better than any of my family members.  It is very unfortunate that Mom had to lose her first child and I truly hope she doesn't have to lose her second.  However, if that does happen she needs to know I have had a wonderful life and I know she has loved me deeply.  I would like our family and friends to please help her through this.  Thank you!

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Posted by Kathy at 3/26/2006 7:51 PM | View Comments (7) | Add Comment | Trackbacks (0)
Thank you Courtney and Lora



Message From Kathy....


My daughter Courtney and her friend (pictured above) have put this site together for me and I want to let them know how much I like it.  I do -- it is great.   

Courtney, you are a wonderful person to talk with.  You help me when I am upset, which I have been often since December.  Thank you for all that you have done. 

I am doing well, I am on Rilutek - helps slow progression (we hope), minocyline (sp) (for some infection), Effexor (for depression) and am trying Provigil for my fatigue.  I am still working full time.  I have a desk job, but it is not a stressful job like the one I had for the last 10 years.  I may reduce to 32 hours soon.  I would like to hear from others that are still working.  I have my good days and boy those pity parties!  They come once in awhile and usually when I am alone.  Although my symptoms aren't visible I have gotten a disabled parking permit.  I am hoping this helps with my energy. 

This morning I asked my son who lives at home to clean the house for me, and he was very kind but he had to work today, then go out to dinner tonight and then housesit for his sister.  Well you know about crying when not appropriate, I did it and I tried hard to tell him it was ALS not me -- I can handle a dirty house for a few more days.  He gave me one of those great hugs of his and I went off to work.  When I came home I saw smoke from our smoke stack and knew a fire was heating the house.  When I opened the door my house was clean.  Corey had gotten off early and came home and cleaned it for me.  Bless his heart. 

I will end this now.
 

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Posted by Kathy at 3/24/2006 5:55 PM | View Comments (0) | Add Comment | Trackbacks (0)
March 2006 Appointment
 

Message From Courtney...

On March 1, 2006, Mom had an appointment at Virginia Mason in Seattle.  My Dad and I went along with her.  It was an all-day appointment with the ALS Clinic - where she saw everyone from speech therapists, her regular MD, respiratory therapists to a psychologist.  It was a long day, but very helpful. 

 

Right now, her only two symptoms remain her speech, which her therapists refer to as a mild slur and weakened left hand and forearm.  We didn’t learn anymore about if her progression is going fast or slow. Her doctor (John Ravits) couldn’t notice any change in her progression from her December 2005 appointment.  He did indicate that if this all really did start in September 2005, then her progression is fast.  However, he has no way of knowing that for sure at this point – he said we will all know more in the next three to six months.  So, we are all hoping that it really started much longer before.  (Note: ALS is a progressive disease, but it tends to remain at the same rate of progression – so – if it starts slow it usually continues to progress slowly and vice versa).

 

So, basically the big stuff is she needs to make sure she is eating well.  And the good news is she gets to eat whatever she wants, but it needs to have nutritional value.  No skipping dinners or just eating cereal at night.  Dad needs to help out more with meals and my Grandma and I will be helping more by providing meals to be frozen and reheated.  So, if you ever want to go out to dinner and eat good food – this is the woman to call!

 

We had dinner that night with my college friend Jen (best known as OJ) and cousin, Salina.  OJ is organizing a trip to take my Mom to Peru for two weeks with her this July (more details to come).  Also, my Mom’s friends from Bunko are trying to make it possible for my parents to tour all the US states in a motor home – something my Mom has always wanted to do.

 

Thanks for all of your thoughts and prayers.  We appreciate everyone’s support.

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Posted by Courtney at 3/22/2006 9:55 PM | View Comments (0) | Add Comment | Trackbacks (0)
Diagnosis - December 2005
 

Message From Courtney...


My Mom (Kathy) was first diagnosed with ALS or Lou Gehrig's disease on December 16, 2005.  She was having weakness in her left hand and mild slurring of her speech. 

Here is some info from the ALS website for those of you unfamiliar with the disease:

 

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.  Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, the disease is variable and many people live with quality for five years and more.  

 

She was initially diagnosed by a local neurologist, and he encouraged a second opinion from an ALS “expert”.  She received that further evaluation at Virginia Mason – where they have an ALS clinic.  Just one week later, she was scheduled for her second opinion.

On December 22, 2005, it was confirmed she indeed has ALS at the young age of 50.  Her doctor was unsure what path the illness will take and just how fast her progression will be.  He said the next three months to a year will be very telling to know what the future may hold. 

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Posted by Courtney at 3/20/2006 9:54 PM | View Comments (6) | Add Comment | Trackbacks (0)