Tuesday, October 12, 2010
Vi and Peg's Adventure Trek and Run 2010!!!
Vi and Peg's Adventure Trek and Run was a huge success again this year! Thank you to all those who helped put the event together, the MDA, HURT, PJ and John and everyone else who helped make it another success. Thank you also to all those who participated! It was a beautiful day at Kualoa! While it was a bit over cast most of the day, it was still hot as ever! Below are some photos from the event. We look forward to seeing you all again next year!
Wednesday, September 22, 2010
Vi and Peg's Adventure Trek and Run
Here is the application for Vi and Peg's Adventure Trek and Run. The race is on 10/10! You can also go to HURTHawaii.blogs.com for more info. The deadline to apply for the race is October 1 and no late applications will be accepted to so hury and enter and we'll see you there!
Monday, September 6, 2010
MDA Telethon
The Jerry Lewis MDA Telethon airs today, Labor Day, on KITV-4. Be sure to tune in today to watch! There will be a live interview with Jan at 2:00 this afternoon and Natalie will be answering telethon phones from 3:00 to 5:00pm so please be sure to call in and donate! Here are the numbers to call:
MDA Donation Phone Numbers
Oahu: 792-4632
Maui: 270-2632
Hawaii: 930-2632
Kauai: 240-2632
Address:
MDA Hawaii
1221 Kapiolani Blvd #220
Honolulu, HI 96814
MDA Donation Phone Numbers
Oahu: 792-4632
Maui: 270-2632
Hawaii: 930-2632
Kauai: 240-2632
Address:
MDA Hawaii
1221 Kapiolani Blvd #220
Honolulu, HI 96814
Tuesday, August 10, 2010
Vi's Adventure Trek and Run
It's set!!! Vi and Peg's 3rd Annual Adventure Trek and Run will be held on October 10, 2010 at Kualoa Ranch Valley! How cool is that? The trek and run will be on 10/10/10!!! We look forward to seeing everyone again this year at beautiful Kualoa Valley for another breath taking trek. More details to follow as it gets closer. We're putting the word out there, so please mark your calendars!
Saturday, July 10, 2010
Friday, July 9, 2010
Fourth of July SUCCESS!
Vi really wanted to write the Fourth of July Update Blog herself, but her neck has been hurting so she asked me to write it. She's a much better writer then I am, but here goes anyway.....
Early in morning on the 4th, our country's birthday and Lou Gehrig's 76th year of retirement from baseball when he was diagnosed with ALS (Vi wrote this line, see how good she is).
Our Fourth of July set up crew met at Divina's house at 7:00am sharp to load up her tents, tables, grill and decorations. Meanwhile, at a much earlier hour, Glizza and company were busy picking up the Fourth of July BBQ food from Vi and Jan's house. We all met at the Kapiolani Park and began the long haul of set up for the second annual ALS Fourth of July BBQ. The tents were set up on the Diamond Head side of the park, trees were wrapped in red, white and blue streamers and the American flag flew high. It was a team effort! Thank you to our set up crew for your hardwork!
When we finally started with a welcome speech from Jan, he remembered all who could not come and those among us who flew to Heaven this year: Daria, Sylvia, Nancy, Joe, Bully, Charlie. They are having their own fireworks up there, I bet.
Lance and Nicole manned the BBQ grill, grilling up burgers and dogs. Vicky and Priscilla collected tickets and donations. Nancy was busy making shave ice. Jeannie was painting the kiddies face. Divina and Natalie called out winning raffle numbers. Pete took photos and everyone had a great time! Thank you to all of our raffle prize donors: Tropical Blends, Ocean Minded, Smith, Vertra, The Peggy Chun Gallery, Menchies Frozen Yogurt, Bikram Yoga and The Moana Surfrider. Thank you to Daniel, Cole and Tanya for collecting the prizes! Thank you to D. Otanu Produce for donating the veggies and to Loves Bakery for the buns!
Vi, Britt, Chester and Celeste were there enjoying the festivities and soaking up the sun.
The Fourth of July competitive spirit was souring high! We played water balloon toss, tug-o-war, relays and a good ol' fashion game of softball.
This Fourth of July was a huge success and could not have been possible without the tremendous help from family, friends and strangers. For fear that I might leave a name out I'm just going to say thank you to all for making this event so successful, you know who you are no matter how big or how small your contribution. Pictures are soon to follow!
Early in morning on the 4th, our country's birthday and Lou Gehrig's 76th year of retirement from baseball when he was diagnosed with ALS (Vi wrote this line, see how good she is).
Our Fourth of July set up crew met at Divina's house at 7:00am sharp to load up her tents, tables, grill and decorations. Meanwhile, at a much earlier hour, Glizza and company were busy picking up the Fourth of July BBQ food from Vi and Jan's house. We all met at the Kapiolani Park and began the long haul of set up for the second annual ALS Fourth of July BBQ. The tents were set up on the Diamond Head side of the park, trees were wrapped in red, white and blue streamers and the American flag flew high. It was a team effort! Thank you to our set up crew for your hardwork!
When we finally started with a welcome speech from Jan, he remembered all who could not come and those among us who flew to Heaven this year: Daria, Sylvia, Nancy, Joe, Bully, Charlie. They are having their own fireworks up there, I bet.
Lance and Nicole manned the BBQ grill, grilling up burgers and dogs. Vicky and Priscilla collected tickets and donations. Nancy was busy making shave ice. Jeannie was painting the kiddies face. Divina and Natalie called out winning raffle numbers. Pete took photos and everyone had a great time! Thank you to all of our raffle prize donors: Tropical Blends, Ocean Minded, Smith, Vertra, The Peggy Chun Gallery, Menchies Frozen Yogurt, Bikram Yoga and The Moana Surfrider. Thank you to Daniel, Cole and Tanya for collecting the prizes! Thank you to D. Otanu Produce for donating the veggies and to Loves Bakery for the buns!
Vi, Britt, Chester and Celeste were there enjoying the festivities and soaking up the sun.
The Fourth of July competitive spirit was souring high! We played water balloon toss, tug-o-war, relays and a good ol' fashion game of softball.
This Fourth of July was a huge success and could not have been possible without the tremendous help from family, friends and strangers. For fear that I might leave a name out I'm just going to say thank you to all for making this event so successful, you know who you are no matter how big or how small your contribution. Pictures are soon to follow!
Thursday, July 1, 2010
Wednesday, June 30, 2010
AWARENESS, AWARENESS, ALS AWARENESS
Last year 4TH OF JULY was declared ALS AWARENESS DAY by Mayor Mufi Hanneman. No one pursued the mayor's office this year to obtain the same proclamation as last year. There are different kinds of awareness. The proclamation declared by the mayor was to make aware what is ALS as most people do not know what is ALS. The awareness written about today is about physical awareness, emotional awareness and spiritual awareness. These are three important components that every person and family member touched with the disease should be aware.
I feel every day should be ALS Awareness Day, especially for us who have ALS and their families. Remember the day when your doctor announced to you that you have ALS! You were shocked, your head was spinning, and maybe crying. This will last for awhile until this processes through you and then you can move on to education. We need to educate ourselves first about the disease process and know your body, keeping track of the progression of the disease. Everyone is different. There are many resources out there. Start with your local MDA (Hawaii MDA has a wealth of resources and knowledgeable people that would love to help you.)
Search your heart, reviewing your life and it's meaning to you, your priorities in life and are they to remain the same. Educate your family about this awful progressive disease that will steal part of your life away that you are so looking forward to spending time with your family watching them grow up! From there you and your family can educate all of your friends and the people that stare at you (For the one's starring: I use to throw the SHAKA with a big smile).
Again search your heart spiritually and know where you stand between you and your God. I know I have a wonderful loving God. Take time to talk to your pastor or counselor, sharing the issues that are heavy on your heart. Relationships will go up and down like a roller coaster along with your emotions. Seek marital counseling, again go talk to your pastor and have someone you trust come and help with a family intervention that all will understand and also bring up their own fears. Having a family intervention can bring unity and understanding to the family.
I wrote the above from my personal perspective. When I was diagnosed, I was sitting on the clinic bed and the Janster was sitting on a chair next to me. We both had a good idea what was ALS. When the doctor opened his mouth and the words flowed out ALS. I closed my eyes and prayed, "please God give me strength and please take this burden away." In an instant I felt lighter and knew Jesus was with me and will be with me to the end.
After hearing the sad news, both Jan and I cried and cried for awhile. Jan put together a nice binder of information about ALS for each of our 3 children. I met with Daniel in person on Mother's Day at Magic Island over looking our favorite surf spot Ala Moana Bowls. Tihis was one of the saddest thing I've had to do. We cried and cried together with hardly any spoken words. There was no need for words. Jan called the other two children who lived abroad telling them the sad news and sending them a copy of the binder of ALS materials.I spoke to each child to see how they were doing emotionally.(As a mom and nurse, I wanted to make sure they were understanding what this disease was about and how it would affect their/our lives.
Jan and I made a Ben Franklin Truth chart of all the things we wanted to do and what I wanted to do before the big HURRAH. The first 3 years, I continued to work on an on-call bases and traveled with the kids thru Europe on the surf tour and meeting up with Jan to spend time and travel witb him. I spent 18 months studying for my Masters in nursing with my nursing friends which we all finished in flying colors. The last 5 years we have spent many months in Bali near our son Mikala, watching our grandchild grow and surfing. (Jan's favorite place to surf). I continued to swim and surf until I no longer could. The passion of running turned into walking, then with a cane and then with a walker and finally a wheel chair pushed by my friends. (We did the Haleakala Run to the Sun Race the last 5 years as a relay). The list goes on and we've checked them off. Family is the top of my list.
We continue to see a counselor once in a while to check in to see how our relationship is going emotionally. This seems to be working well. I continue to meet with my pastor once a week. I am now on the vent having 24/7 care. I take it one day at a time keeping in check my emotional, physical and spiritual awareness.
On my last post, I received a comment from a 44 year old lady just diagnosed with ALS who touched my heart. The one who gives me solace and peace in this life is God.
God Bless,
vi
I feel every day should be ALS Awareness Day, especially for us who have ALS and their families. Remember the day when your doctor announced to you that you have ALS! You were shocked, your head was spinning, and maybe crying. This will last for awhile until this processes through you and then you can move on to education. We need to educate ourselves first about the disease process and know your body, keeping track of the progression of the disease. Everyone is different. There are many resources out there. Start with your local MDA (Hawaii MDA has a wealth of resources and knowledgeable people that would love to help you.)
Search your heart, reviewing your life and it's meaning to you, your priorities in life and are they to remain the same. Educate your family about this awful progressive disease that will steal part of your life away that you are so looking forward to spending time with your family watching them grow up! From there you and your family can educate all of your friends and the people that stare at you (For the one's starring: I use to throw the SHAKA with a big smile).
Again search your heart spiritually and know where you stand between you and your God. I know I have a wonderful loving God. Take time to talk to your pastor or counselor, sharing the issues that are heavy on your heart. Relationships will go up and down like a roller coaster along with your emotions. Seek marital counseling, again go talk to your pastor and have someone you trust come and help with a family intervention that all will understand and also bring up their own fears. Having a family intervention can bring unity and understanding to the family.
I wrote the above from my personal perspective. When I was diagnosed, I was sitting on the clinic bed and the Janster was sitting on a chair next to me. We both had a good idea what was ALS. When the doctor opened his mouth and the words flowed out ALS. I closed my eyes and prayed, "please God give me strength and please take this burden away." In an instant I felt lighter and knew Jesus was with me and will be with me to the end.
After hearing the sad news, both Jan and I cried and cried for awhile. Jan put together a nice binder of information about ALS for each of our 3 children. I met with Daniel in person on Mother's Day at Magic Island over looking our favorite surf spot Ala Moana Bowls. Tihis was one of the saddest thing I've had to do. We cried and cried together with hardly any spoken words. There was no need for words. Jan called the other two children who lived abroad telling them the sad news and sending them a copy of the binder of ALS materials.I spoke to each child to see how they were doing emotionally.(As a mom and nurse, I wanted to make sure they were understanding what this disease was about and how it would affect their/our lives.
Jan and I made a Ben Franklin Truth chart of all the things we wanted to do and what I wanted to do before the big HURRAH. The first 3 years, I continued to work on an on-call bases and traveled with the kids thru Europe on the surf tour and meeting up with Jan to spend time and travel witb him. I spent 18 months studying for my Masters in nursing with my nursing friends which we all finished in flying colors. The last 5 years we have spent many months in Bali near our son Mikala, watching our grandchild grow and surfing. (Jan's favorite place to surf). I continued to swim and surf until I no longer could. The passion of running turned into walking, then with a cane and then with a walker and finally a wheel chair pushed by my friends. (We did the Haleakala Run to the Sun Race the last 5 years as a relay). The list goes on and we've checked them off. Family is the top of my list.
We continue to see a counselor once in a while to check in to see how our relationship is going emotionally. This seems to be working well. I continue to meet with my pastor once a week. I am now on the vent having 24/7 care. I take it one day at a time keeping in check my emotional, physical and spiritual awareness.
On my last post, I received a comment from a 44 year old lady just diagnosed with ALS who touched my heart. The one who gives me solace and peace in this life is God.
God Bless,
vi
Tuesday, June 29, 2010
COUNT DOWN TO THE 4TH OF JULY PICNIC FOR ALS
YEAP! This is the count down for the preparations for our ALS 4TH OF JULY PICNIC honoring Yankee baseball star Lou Gehrig's retirement from baseball SEVENTY-SIX YEARS ago when he was diagnosed with ALS. Our Hawaii ALS Ohana have been working very hard to make this event a success to help start a foundation for
helping our Hawaii ALS families in need for a care giver for respite time and also to make sure you have a lot of fun.
This is Hawaii ALS Support Group biggest fund raiser to help our ALS families give quality care to their loved one as well as to give the family time to re-energize themselves. ALS is a disease that can occupy the care giver's time causing burnout if there is no relief for that care give. (I can give you an example, since I am an experienced ALSer: When I go to bed at night, my body molds to the bed making every bump and crease irritable to my body. The weight of my body becomes heavier and heavier and I soon feel my circulating blood slow down in my extremities until their numb. I call on my care giver many times at night to help me get comfortable, to do range of motion on my extremity's and then to take care of all my other needs! I know each morning when the sun is rising to a new day, that care giver is poopped!) Now just imagine if this care giver was a family member and had to go to work! Sooner than later this family would be in chaos.
Many families care for their loved one and do not have the luxury to hire an outside care giver to give the family a time out. Care givers cost anywhere from $10-$25 per hour depending on their schooling, certificate for CNA and experience. Don't forget ALSers need 24/7 care. As you can see, the cost adds up.
Thank you! Hawaii ALS Support Group for making this a success. This OHANA comprises of families with current loved one with ALS, family members who have lost a loved one to ALS and wonderful friends whose hearts have been touched. More than special MAHALO to DIVINA ROBILLARD, RN, MPH. Divina is the founder of Hawaii ALS Group under the MDA. Divina and Natalie have been the ACTION directors for our picnic and I have been the bed potato making sure everything is covered.
Thank you again to all my friends, family and those out there who are touched for supporting Hawaii ALS Support Group.
God bless you all!
Good nite Violet and Bella. Good nite Spike.
Nana loves you!
ALOHA
vi
"All things are possible through my God who strengthens me daily."
helping our Hawaii ALS families in need for a care giver for respite time and also to make sure you have a lot of fun.
This is Hawaii ALS Support Group biggest fund raiser to help our ALS families give quality care to their loved one as well as to give the family time to re-energize themselves. ALS is a disease that can occupy the care giver's time causing burnout if there is no relief for that care give. (I can give you an example, since I am an experienced ALSer: When I go to bed at night, my body molds to the bed making every bump and crease irritable to my body. The weight of my body becomes heavier and heavier and I soon feel my circulating blood slow down in my extremities until their numb. I call on my care giver many times at night to help me get comfortable, to do range of motion on my extremity's and then to take care of all my other needs! I know each morning when the sun is rising to a new day, that care giver is poopped!) Now just imagine if this care giver was a family member and had to go to work! Sooner than later this family would be in chaos.
Many families care for their loved one and do not have the luxury to hire an outside care giver to give the family a time out. Care givers cost anywhere from $10-$25 per hour depending on their schooling, certificate for CNA and experience. Don't forget ALSers need 24/7 care. As you can see, the cost adds up.
Thank you! Hawaii ALS Support Group for making this a success. This OHANA comprises of families with current loved one with ALS, family members who have lost a loved one to ALS and wonderful friends whose hearts have been touched. More than special MAHALO to DIVINA ROBILLARD, RN, MPH. Divina is the founder of Hawaii ALS Group under the MDA. Divina and Natalie have been the ACTION directors for our picnic and I have been the bed potato making sure everything is covered.
Thank you again to all my friends, family and those out there who are touched for supporting Hawaii ALS Support Group.
God bless you all!
Good nite Violet and Bella. Good nite Spike.
Nana loves you!
ALOHA
vi
"All things are possible through my God who strengthens me daily."
Friday, June 25, 2010
This 4Th of July, the ALS SUPPORT GROUP will again have a fund raiser honoring Lou Gehrig's seventy-one years of retirement after being diagnosed with ALS. This year your donated money will stay at home in Hawaii to help our ALS families throughout Hawaii. When ALS strikes a family member, this also affects the whole family and circle of friends. As the ALS progresses, more care is needed which becomes a heavy burden to the family especially if there are no other help and there are other involvements outside the home such as work, school and raising children. Family members become burnt out which signs are being resentful, depression and not doing a good job of care giving. These families need help with another care giver stepping in to give the family member respite time. However, this scenario does not take place very often because of the cost to hire another care giver. One of the goals of the ALS SUPPORT GROUP is to help these families by paying for a needed care giver in time of need.
Cost of tickets are $5 for delicious picnic food, a raffle ticket ,fun ole fashion games and baseball at Kapiolani Park staring at 11:00am-4:00pm.
Call Vi's cell (808) 256-9607 for tickets. See Natalie's poster above. We will also graciously accept your donations greater than $5.
Make check out to:
DIVINA ROBILLARD
HAWAII ALS SUPPORT GROUP
244 AKIOHALA ST
KAILUA, HI 96734
Wednesday, June 16, 2010
Fourth of July BBQ and Fun for ALS Fundraiser
Last year we celebrated 4Th of July honoring one of the baseballs' greatest player retirement, Lou Gehrig of the Yankees. Lou Gehrig retired from baseball seventy-one years ago when he was diagnosed with ALS which was not quite as known as today. Since Lou Gehrig's retirement seventy-one years ago a cure for ALS has not yet been found. Last year the ALS Support Group with leader Divina leading the way were able to raise approximately $3000 for TDI Research the largest ALS research center in the United States. Our 4Th of July picnic, games and baseball was a success because everyone gave a hand in helping with the tents, helped with the BBQ, helped with the clean up, participated in the fun old fashion games and played baseball.
This 4Th of July, the ALS SUPPORT GROUP will again have a fund raiser honoring Lou Gehrig's seventy-one years of retirement after being diagnosed with ALS. This year your donated money will stay at home in Hawaii to help our ALS families throughout Hawaii. When ALS strikes a family member, this also affects the whole family and circle of friends. As the ALS progresses, more care is needed which becomes a heavy burden to the family especially if there are no other help and there are other involvements outside the home such as work, school and raising children. Family members become burnt out which signs are being resentful, depression and not doing a good job of care giving. These families need help with someone else stepping in to give the family member respite time. However, this scenario does not take place very often because of the cost to hire another care giver. One of the goals of the ALS SUPPORT GROUP is to help these families by paying for a needed care giver in time of need.
Cost of tickets are $5 for delicious picnic food, a raffle ticket ,fun ole fashion games and baseball at Kapiolani Park staring at 11:00am-4:00pm.
Call Vi's cell (808) 256-9607 for tickets. See Natalie's poster.
I apologize for letting you know a little late. About a week ago I had my first bout of
P. .pneumonia that set me back along with my slow pace typing one letter at a time with my head mouse.
Thank you and God bless!
vi
Sunday, June 13, 2010
SHARE THE CARE IS ALIVE AND WELL
We have been giving out accolades to all of our care givers and everyone else , however we have not forgotten about
our Share the Care, a group of friends and volunteers who generously give us their time to help Jan and I have a life of substance. Share the Care Friends are broken into groups of things that they are interested in helping such as doing the flowers,massage, grocery shopping, cooking once a week, getting the laundry and even as far as helping interview and pick my present care givers. We also have Share the Care Friends and Family that come from the the outer island and mainland spending the week-end to share their love and give the Janster some respite time for himself. We have been blessed to have all these wonderful people in our lives. I pray for every person and family that comes into my room.
First of all I have to tell you how useless I feel to myself and the world. However, I thank the Lord for the use of my neck and facial muscles that I can still smile and mouth the words I want to speak. And how wonderful it is to have Share the Care
Friends come and do the things I use to love to do like cooking and arranging my flowers. We have 5 friends that love to cook and who all take turns one week a month bringing their delicious homemade meals for Jan and caregivers. The food they bring is a feast not only to the palette but for the eyes as well. There are a few gourmet chefs within our Share the Care Friends that are very conscious about their health that now I don't have to worry about what Jan is eating. Thank you to Cellia, Fran, Marian, Punkin and Angie : ) you make me happy when Jan's tummy is filled with your home cooking.
Kathy Q and PJ has been doing an excellent job arranging the beautiful flowers. My family from Hilo have been sending me a steady supply of Hilo's Anthuriums of various colors and sizes and my favorite Dendrobium orchids that lasts forever! Thank you! Most of my friends know how much I love flowers so my room is filled with flowers.
Thanks to Peggy for taking care of our cats, Mama and Baby cat, doing their monthly grooming. Thanks for Allen T, who comes periodically to help our care givers . It's always nice to spend time with friends.
At least once a week, I get a massage from one of our Share the care massage therapist; Andrea, Christa and Sandra. Massage and range of motion are important to keep my circulation going and keep my joints mobile. Any time your visiting, don't be afraid to grab an arm, hand or leg to massage or do some range of motion. One can never do enough of both to help someone with ALS.
There are many others who come to the house to do things around the house or errands that make life easier for us. Thank you
to those others! I want you to know how happy it makes to see you and how much I appreciate the time you take out of your life for Jan and me.
We can't forget those behind the scene that makes our Share the Care work out so smoothly. Janice has quietly and graciously coordinated our Share the Care Friends with the help of Natalie. Thank you Janice and Natalie for directing our Share the Care Friends!
God Bless all of you!
Good nite Bella, baby Violet, and Spike! Nana loves you!
Aloha,
vi
our Share the Care, a group of friends and volunteers who generously give us their time to help Jan and I have a life of substance. Share the Care Friends are broken into groups of things that they are interested in helping such as doing the flowers,massage, grocery shopping, cooking once a week, getting the laundry and even as far as helping interview and pick my present care givers. We also have Share the Care Friends and Family that come from the the outer island and mainland spending the week-end to share their love and give the Janster some respite time for himself. We have been blessed to have all these wonderful people in our lives. I pray for every person and family that comes into my room.
First of all I have to tell you how useless I feel to myself and the world. However, I thank the Lord for the use of my neck and facial muscles that I can still smile and mouth the words I want to speak. And how wonderful it is to have Share the Care
Friends come and do the things I use to love to do like cooking and arranging my flowers. We have 5 friends that love to cook and who all take turns one week a month bringing their delicious homemade meals for Jan and caregivers. The food they bring is a feast not only to the palette but for the eyes as well. There are a few gourmet chefs within our Share the Care Friends that are very conscious about their health that now I don't have to worry about what Jan is eating. Thank you to Cellia, Fran, Marian, Punkin and Angie : ) you make me happy when Jan's tummy is filled with your home cooking.
Kathy Q and PJ has been doing an excellent job arranging the beautiful flowers. My family from Hilo have been sending me a steady supply of Hilo's Anthuriums of various colors and sizes and my favorite Dendrobium orchids that lasts forever! Thank you! Most of my friends know how much I love flowers so my room is filled with flowers.
Thanks to Peggy for taking care of our cats, Mama and Baby cat, doing their monthly grooming. Thanks for Allen T, who comes periodically to help our care givers . It's always nice to spend time with friends.
At least once a week, I get a massage from one of our Share the care massage therapist; Andrea, Christa and Sandra. Massage and range of motion are important to keep my circulation going and keep my joints mobile. Any time your visiting, don't be afraid to grab an arm, hand or leg to massage or do some range of motion. One can never do enough of both to help someone with ALS.
There are many others who come to the house to do things around the house or errands that make life easier for us. Thank you
to those others! I want you to know how happy it makes to see you and how much I appreciate the time you take out of your life for Jan and me.
We can't forget those behind the scene that makes our Share the Care work out so smoothly. Janice has quietly and graciously coordinated our Share the Care Friends with the help of Natalie. Thank you Janice and Natalie for directing our Share the Care Friends!
God Bless all of you!
Good nite Bella, baby Violet, and Spike! Nana loves you!
Aloha,
vi
Saturday, May 29, 2010
Vi's First Outdoor Shower!
Just wanted to post this beautiful photo from Vi's first outdoor shower since she has been home! How beautiful and refreshing does it look?!?
Monday, May 24, 2010
HOME SWEET HOME
It's been a little more than two months that I have been home adjusting to my new way of life with a vent to breathe for me, a G-tube that takes in all my nourishment (all of one flavor every day) and eight caregivers that divide the hours of the month so that I can have someone with me 24/7.
Can you imagine having someone with you 24/7 and doing everything for you because you are not able to move. Your body's muscles have deterioated and once your body is put down to bed it becomes heavy and then numb as the circulation of your body slows down and then there is potential for skin break down on any bony prominence like your sit bones, tail bone, elbow, back bone or anything that sticks out. This is where the care giver come in to massage, move and do some range of motion to all extremities. This happens approximately every 2 hours. Another importance of comfort are the positioning of my 3-4 pillows can determine how well I sleep. There have been a few nights where I've had a new care giver who did not know about pillow positioning and could not read lips. We were really in trouble then!
I am very thankful for my team of caregivers (Glizza, Andrea, Keith, Keisha, Renee, Sierra, and Michelle. Backups are Natalie, Daniel). Also to Corey of Care Alternatives and staff who have instructed our care givers in the many nursing aspects for care giving and the vent.
I have to thank Jan for his hard work and persistence in obtaining the best care and fixing everything at home for me! Jan totally ROCKS! I LOVE YOU HONEY!
All in all, it's been a tough road, however I am blessed to be here at home with my family and friends.
Good nite Bella, good nite Violet and good nite Spike! Nana loves you all!
Aloha and God Bless
vi
Friday, May 21, 2010
Vi’s adjustment to her new life with the vent at home is starting to settle in, as is the case with all of us taking care of her.
She has relatively few doctors appointments. The doctors either come to the house or visit her via the camera/internet system we have.
We now have a good group of eight caregivers that provide 24 hour a day comfort for Vi. The caregiving is very intense in that her mouth is suctioned about every 5± minutes. Her lungs are suctioned about once an hour. She also requires constant moving/shifting by the caregiver as she can’t move herself. Toileting, bathing, etc. is all handled in the bed. She is basically in her bed 24 hours a day, 7 days a week except for a few occasions.
Getting out of the bed is somewhat complicated and involves 2 or 3 people. We use a hoyer lift to raise her. It’s not possible to lift her up by hand due to her connection to the feeding tube and ventilator. As other aspects of her care are becoming second nature, we intend to work on getting her out of the bed more often.
We did have a minor emergency situation last week when the ventilator stopped working. The caregiver, Kisha, promptly recognized the situation, got me to help her and began to bag Vi (use the ambu bag to manually provide air to her lungs). After a few minutes, Kisha found the air leak problem. We fixed it and told the emergency people that were on their way that everything was alright.
Another event involved taking Vi to the emergency room at Queen’s Hospital to have her trach switched. The old one was malfunctioning. Getting her ready, out the door and to the hospital required 5 of us as we had to go with vent, suction machine, backup battery, power chair, ambu bag and other related equipment. All went well. Vi now has a new trach.
Vi is using her computer and connection to the internet more and more. However, she still is not using the Dynavox machine which can speak for her. Communication is pretty much handled by watching her lips as she forms words or letters. Some of us are better/worse than others at understanding what she means.
In summary, Vi/we have made a lot of progress since she left the hospital two months ago. Her spirits remain good, mitigated somewhat by the very difficult/uncomfortable situation.
So much for now.
She has relatively few doctors appointments. The doctors either come to the house or visit her via the camera/internet system we have.
We now have a good group of eight caregivers that provide 24 hour a day comfort for Vi. The caregiving is very intense in that her mouth is suctioned about every 5± minutes. Her lungs are suctioned about once an hour. She also requires constant moving/shifting by the caregiver as she can’t move herself. Toileting, bathing, etc. is all handled in the bed. She is basically in her bed 24 hours a day, 7 days a week except for a few occasions.
Getting out of the bed is somewhat complicated and involves 2 or 3 people. We use a hoyer lift to raise her. It’s not possible to lift her up by hand due to her connection to the feeding tube and ventilator. As other aspects of her care are becoming second nature, we intend to work on getting her out of the bed more often.
We did have a minor emergency situation last week when the ventilator stopped working. The caregiver, Kisha, promptly recognized the situation, got me to help her and began to bag Vi (use the ambu bag to manually provide air to her lungs). After a few minutes, Kisha found the air leak problem. We fixed it and told the emergency people that were on their way that everything was alright.
Another event involved taking Vi to the emergency room at Queen’s Hospital to have her trach switched. The old one was malfunctioning. Getting her ready, out the door and to the hospital required 5 of us as we had to go with vent, suction machine, backup battery, power chair, ambu bag and other related equipment. All went well. Vi now has a new trach.
Vi is using her computer and connection to the internet more and more. However, she still is not using the Dynavox machine which can speak for her. Communication is pretty much handled by watching her lips as she forms words or letters. Some of us are better/worse than others at understanding what she means.
In summary, Vi/we have made a lot of progress since she left the hospital two months ago. Her spirits remain good, mitigated somewhat by the very difficult/uncomfortable situation.
So much for now.
Thursday, April 15, 2010
Same, Same, But Different
It's been months since I have blogged! A lot have happened during that time up to the present time. I feel like the same person, but then again different. It's like in Bali where there are so many copy cats. Really, they can copy just about anything. So, when in Bali looking for that special something and something similar pops up. We say "Same, same, but different." And that is how I feel.
First of all I have to thank my God, my family, friends and others for their support, prayers, flowers , cards and love while in the hospital. I am now home settling down in my new bed and new care givers. (Believe it or not I am being bagged with the AMBU bag to practice in case of an emergency and the vent fails to work as I write this.) On the day of my birthday party I was rushed to the emergency room for respiratory distress by Jan, Malia, Spike, Natalie and Renee. . Jan noted that I was acting very lethargic and used a pulse oxyimeter to measure the oxygen in my blood which happened to be in the 80's which is not a good sign and away we went to Queens Medical Center. While checking into the emergency room, I must have lost it because I don't remember anything happening. When I awoke, I was in the respiratory CCU feeling groggy, in pain and something was sticking out of my mouth.
After a few days a traecheostomy was done and a vent hooked up. The three week stay at the hospital was not the best. It's so much better to be in your own surroundings. I now lie in my bed attached to my vent for the air I breath and I sometimes ask myself if this was the right choice! @#!
I thank the Lord for all His Blessing and for giving me another opportunity to life!
I am the same person but different!
Good nite Bella, good nite Violet and good nite Spike! Nana loves you all!
Aloha and God Bless
vi
ALL THINGS ARE POSSIBLE THROUGH CHRIST WHO STRENGTHENS ME
First of all I have to thank my God, my family, friends and others for their support, prayers, flowers , cards and love while in the hospital. I am now home settling down in my new bed and new care givers. (Believe it or not I am being bagged with the AMBU bag to practice in case of an emergency and the vent fails to work as I write this.) On the day of my birthday party I was rushed to the emergency room for respiratory distress by Jan, Malia, Spike, Natalie and Renee. . Jan noted that I was acting very lethargic and used a pulse oxyimeter to measure the oxygen in my blood which happened to be in the 80's which is not a good sign and away we went to Queens Medical Center. While checking into the emergency room, I must have lost it because I don't remember anything happening. When I awoke, I was in the respiratory CCU feeling groggy, in pain and something was sticking out of my mouth.
After a few days a traecheostomy was done and a vent hooked up. The three week stay at the hospital was not the best. It's so much better to be in your own surroundings. I now lie in my bed attached to my vent for the air I breath and I sometimes ask myself if this was the right choice! @#!
I thank the Lord for all His Blessing and for giving me another opportunity to life!
I am the same person but different!
Good nite Bella, good nite Violet and good nite Spike! Nana loves you all!
Aloha and God Bless
vi
ALL THINGS ARE POSSIBLE THROUGH CHRIST WHO STRENGTHENS ME
Monday, March 15, 2010
Vi Update
I wanted to write a quick update on Vi. She is still recovering at Queen's Hospital while her care team is put in place and trained on how to operate the ventilator. We're busy getting the house organized and set up which includes ordering all of the equipment we'll need. Vi is scheduled to be discharged on Monday the 22nd so this is a very busy week. Please email me if you would like to know her room number to visit. She loves the company!
Wednesday, March 3, 2010
Vi Update
Last Sunday, Malia and Jan took Vi to the emergency room when they observed that she had breathing difficulties. She was intabated (a tube inserted into her throat so she could breathe) and placed in the ICU (Intensive Care Unit). This morning (Wednesday), she had the tracheostomy operation. The surgeon performing the operation was hand picked and had completed the New Zealand Ironman Triathlon with Vi over 6 years ago! The anesthesiologist was also a co-athlete with Vi who had volunteered for the operation. It all went well.
All of this was in accordance with Vi’s wishes. She now can fully recline to sleep. Her body is getting all the oxygen she needs without any concern for CO2 buildup.
She will likely be at Queen’s Hospital for a number of weeks while preparations are made for her home care.
She is surrounded by her family. We will keep you posted on her progress.
All of this was in accordance with Vi’s wishes. She now can fully recline to sleep. Her body is getting all the oxygen she needs without any concern for CO2 buildup.
She will likely be at Queen’s Hospital for a number of weeks while preparations are made for her home care.
She is surrounded by her family. We will keep you posted on her progress.
Subscribe to:
Posts (Atom)
