Well when you have spent as much time in the hospital as Hayden has, you have a little bit to say on what you think could be improved. Dr. Seth Bokser, head of UCSF IT, took time to listen to Hayden's input as it relates to IT and presented at this year's Salesforce.com Dreamforce Convention.
Start at minute 16:40 to hear.
Information Technology and the Bleeding Edge of Healthcare
Sunday, October 2, 2011
Wednesday, August 31, 2011
Tonight I said good bye to my mom
Tonight I said good bye to my mom. She is the best mom in the world and it was one of the hardest things I have ever done. I don’t know if she will still be with us when I wake up tomorrow so I am going to tell you about her tonight while I can still write in the present tense.
Here is what I can tell you about my mom.
My mom is an “Okie” and a “Sooner”. You’d never know it because her Tulsa accent is long gone. She moved out to San Francisco to follow my dad. Every time I pass the Swenson’s on Hyde and Union, I look to where her first apartment was just across the street in the cute 2nd story corner building.
My mom can sew a prom dress just by looking at the picture from VOGUE that I tore out and gave to her. It is a beautiful dress. I still have it.
My mom can make a mean Halloween costume out of a paper grocery bag. I walked many laps around the hills of Sausalito with a paper bag over my head and a huge bag full of candy in my hand.
My mom taught me how to be a good mother. To be there for her kids on hot dog day at school, as a troop Girl Scout leader, teaching us to ride our bikes and reading us every single Nancy Drew book.
My mom believes in me. She still tells me that I can do anything or be anything I want to be if I put my mind to it.
My mom is a great cook. Her recipe box is a treasure trove. I love all of her meals, except for the one time she served us sole with bake bananas. ..still won’t do that one again.
My mom is an amazing singer. She loves to sing in the car and embarrasses me like any mother does when she is singing in the car with her daughter. She sang the loudest and the best at church.
My mom is very creative with flower arrangements. She did all of the flowers for almost all of the fundraisers that I held. And she made sure that Star of the Sea was embellished with beautiful bouquets.
My mom has an infectious smile and laugh. She loves being social and I swear she seems to know everyone.
My mom is a great person, mother, wife and friend. Her DG friends are to this day some of her dearest friends.
My mom has instilled in me the importance of family and spending time together. We would spend time as a family skiing at Squaw, laying on the beach in Glenbrook, driving across the country to see family in Oklahoma or just hanging at home in Sausalito.
My mom’s spirit is so genuine and loving. Lately she has taken it to an extreme by giving hugs to people she barely knows…such is the disease that is consuming her mind and body. I suppose it could be worse. To die blissfully unaware that you are dying is a good way to go.
I love you mommy. I hope that you will find peace when you leave us. I know you will be so happy to be reunited with your sister, parents and friends that have left before you. And when you do go, I know that you will always be my guardian angel.
Here is what I can tell you about my mom.
My mom is an “Okie” and a “Sooner”. You’d never know it because her Tulsa accent is long gone. She moved out to San Francisco to follow my dad. Every time I pass the Swenson’s on Hyde and Union, I look to where her first apartment was just across the street in the cute 2nd story corner building.
My mom can sew a prom dress just by looking at the picture from VOGUE that I tore out and gave to her. It is a beautiful dress. I still have it.
My mom can make a mean Halloween costume out of a paper grocery bag. I walked many laps around the hills of Sausalito with a paper bag over my head and a huge bag full of candy in my hand.
My mom taught me how to be a good mother. To be there for her kids on hot dog day at school, as a troop Girl Scout leader, teaching us to ride our bikes and reading us every single Nancy Drew book.
My mom believes in me. She still tells me that I can do anything or be anything I want to be if I put my mind to it.
My mom is a great cook. Her recipe box is a treasure trove. I love all of her meals, except for the one time she served us sole with bake bananas. ..still won’t do that one again.
My mom is an amazing singer. She loves to sing in the car and embarrasses me like any mother does when she is singing in the car with her daughter. She sang the loudest and the best at church.
My mom is very creative with flower arrangements. She did all of the flowers for almost all of the fundraisers that I held. And she made sure that Star of the Sea was embellished with beautiful bouquets.
My mom has an infectious smile and laugh. She loves being social and I swear she seems to know everyone.
My mom is a great person, mother, wife and friend. Her DG friends are to this day some of her dearest friends.
My mom has instilled in me the importance of family and spending time together. We would spend time as a family skiing at Squaw, laying on the beach in Glenbrook, driving across the country to see family in Oklahoma or just hanging at home in Sausalito.
My mom’s spirit is so genuine and loving. Lately she has taken it to an extreme by giving hugs to people she barely knows…such is the disease that is consuming her mind and body. I suppose it could be worse. To die blissfully unaware that you are dying is a good way to go.
I love you mommy. I hope that you will find peace when you leave us. I know you will be so happy to be reunited with your sister, parents and friends that have left before you. And when you do go, I know that you will always be my guardian angel.
Friday, August 26, 2011
A Good Way to Live Life
May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones. (Author unknown)
Tuesday, August 16, 2011
"New Normal"
It's hard to believe that Hayden has been home from the hospital for a month. Summer is flying by and Hayden is getting better and better everyday. In the mean time we are all adjusting to our new normal. I hate that word "new normal", but I guess it's kind of true. Its all new and its as normal as its going to get for the time being.
Top 10 Ten Reasons you know your life is sort of getting back to normal.
1. You’ve been home for one month and haven’t had to call 911.
2. The sweet sound of Sponge Bob permeates the house at all times.
3. You go out to dinner with the entire family.
4. You take the Hayden to the friend’s houses, movies, to the pool club, Best Buy and Swirl.
5. The quiet nights are free from alarms and Code Blue PA announcements.
6. Hayden misses the cute nurses from UCSF…but he would never admit it!
7. Hayden used his “bribe” money to buy an X Box and now his biggest worry is what games to buy.
8. The kids are starting to annoy each other again.
9. I have taken control again of the social schedule for the entire family.
10. John and I don’t have to sleep in a foldout hospital chair anymore.
Top 10 Reasons you know you’re not quite back to normal:
1. Your son is still on a ventilator at night and oxygen during the day.
2. You have to pack up O2 and life saving equipment whenever you go out of the house with Hayden.
3. You have registered your house with the police and fire department as being potentially "explosive" because of all the oxygen in house.
4. You're constantly worried he's going to get sick again.
5. The Master Bedroom is now Hayden’s room and Hayden’s Star Wars room is now our room.
6. When I go to sleep at night it is in a king size bed situated in Luke Skywalker's Sand Cruiser and there are glow in the dark stars on the ceiling.
7. All of the grown up art in the master bedroom is covered with Simpsons posters and Sports posters.
8. Life size images of Buster Posey and Lionel Messi are permanent fixtures in the master…I mean Hayden’s new room.
9. The first night nurse fell asleep on the job….John and I are doing "night watch” until a replacement is found.
10. Instead of the fold out hospital chair, which ever of us is on “night nurse” shift sleeps on the blow up bed next Posey and Messi.
Top 10 Ten Reasons you know your life is sort of getting back to normal.
1. You’ve been home for one month and haven’t had to call 911.
2. The sweet sound of Sponge Bob permeates the house at all times.
3. You go out to dinner with the entire family.
4. You take the Hayden to the friend’s houses, movies, to the pool club, Best Buy and Swirl.
5. The quiet nights are free from alarms and Code Blue PA announcements.
6. Hayden misses the cute nurses from UCSF…but he would never admit it!
7. Hayden used his “bribe” money to buy an X Box and now his biggest worry is what games to buy.
8. The kids are starting to annoy each other again.
9. I have taken control again of the social schedule for the entire family.
10. John and I don’t have to sleep in a foldout hospital chair anymore.
 |
| Really Mom, my sister is annoying me! |
 |
| Dinner at Marin Brew Co. while watching the Giants game. |
 |
| Yummy frozen yogurt at Mill Valley's Swirl. |
 |
| Hanging at the pool with friends. |
Top 10 Reasons you know you’re not quite back to normal:
1. Your son is still on a ventilator at night and oxygen during the day.
2. You have to pack up O2 and life saving equipment whenever you go out of the house with Hayden.
3. You have registered your house with the police and fire department as being potentially "explosive" because of all the oxygen in house.
4. You're constantly worried he's going to get sick again.
5. The Master Bedroom is now Hayden’s room and Hayden’s Star Wars room is now our room.
6. When I go to sleep at night it is in a king size bed situated in Luke Skywalker's Sand Cruiser and there are glow in the dark stars on the ceiling.
7. All of the grown up art in the master bedroom is covered with Simpsons posters and Sports posters.
8. Life size images of Buster Posey and Lionel Messi are permanent fixtures in the master…I mean Hayden’s new room.
9. The first night nurse fell asleep on the job….John and I are doing "night watch” until a replacement is found.
10. Instead of the fold out hospital chair, which ever of us is on “night nurse” shift sleeps on the blow up bed next Posey and Messi.
 |
| The blowup bed in Hayden's "new" room where we keep watch over him at night until a new night nurse is found. |
 |
| O2 Tanks waiting to go out on an adventure with Hayden. The machine next to them is a condenser that provides oxygen for Hayden and refills the tanks for us. We are high tech here! |
Monday, July 25, 2011
Scientists Discover Why Bones Grow on Muscle
Researchers think they've found out why some people's muscles mistakenly grow bones.
The condition, called heterotopic ossification, occurs when an area of the body is signaled to grow bone rather than other tissues. In short, the condition gives rise to bones growing in places they're not usually found -- in muscles. People may experience the phenomenon after recovering from injury or may have it from birth.
NEWS: New Artificial Bone Made of Wood
Though there's no way to prevent or know when a person will develop heterotopic ossification, scientists now have a starting point to develop drugs that could help treat the problem.
Approximately 1 person out of every 2 million people worldwide is born with a permanent type of the condition called fibrodysplasia ossificans progressiva (FOP), which causes muscles to consistently produce bone, especially when a person is injured or sick. In more serious cases, the disease can hinder a person's mobility and even shorten his or her life.
In a study in the Journal of Cellular Biochemistry, researchers at Northwestern University's Feinberg School of Medicine found high levels of a neuropeptide called "Substance P," or SP, in both FOP patients and individuals who developed heterotopic ossification. From previous studies, it's known that SP causes inflammation and is used by the brain's neurons to help send white blood cells to injured areas of the body.
NEWS: Gel Heals Injured Brain and Bone
By studying 16 tissue samples from patients living with heterotopic ossification and FOP, scientists noticed a spike in the compound. They also compared the samples with four male controls. In other experiments, they discovered that "knocking" out the gene that produces SP in transgenic mice lowered their chances of acquiring the condition.
Despite potential treatment options in the future, researchers will need to find more about how SP works in a larger number of patients and whether it can be realistically controlled in people with life-long forms of heterotopic ossification.
Photo by Minervaaa/Wikimedia Commons
Friday, July 22, 2011
Research Breakthrough - Neurological Connection to FOP
The Nervous System and FOP
New insight into the neurological connection in FOP bone formation, and potential new treatment targets. Pieces of the puzzle are coming together!
New research findings recently published in two complementary articles have found a distinct connection between the sensory branch of the nervous system and the formation of Heterotopic Bone. A very exciting new discovery! An editorial by Dr. Fred Kaplan, Dr. Eileen Shore and Dr. Bob Pignolo of The Center for Research in FOP and Related Disorders at the University of Pennsylvania describes the significance of these findings as it relates to FOP. Click here to read: Sensory Nerves Regulate the Innate Immune System and Amplify Heterotopic Ossification (PDF format)
Article published by Baylor University describes the connection between the sensory nerves and the regulation of the immune system. Two researchers/authors of this article, Francis Gannon and Elizabeth Olmstead-Davis have previously worked in the FOP laboratory at the University of Pennsylvania. Click here for article: Sensory Nerve Induced Inflammation Contributes to Heterotopic Ossification
Article published from Northwestern University in a collaborative research effort with the University of Pennsylvania describes the connection between a neuro-inflammatory factor (Substance P) and FOP/Heterotopic Ossification. Click here for article: Substance P Signaling Mediates BMP Dependent Heterotopic Ossification
New insight into the neurological connection in FOP bone formation, and potential new treatment targets. Pieces of the puzzle are coming together!
New research findings recently published in two complementary articles have found a distinct connection between the sensory branch of the nervous system and the formation of Heterotopic Bone. A very exciting new discovery! An editorial by Dr. Fred Kaplan, Dr. Eileen Shore and Dr. Bob Pignolo of The Center for Research in FOP and Related Disorders at the University of Pennsylvania describes the significance of these findings as it relates to FOP. Click here to read: Sensory Nerves Regulate the Innate Immune System and Amplify Heterotopic Ossification (PDF format)
Article published by Baylor University describes the connection between the sensory nerves and the regulation of the immune system. Two researchers/authors of this article, Francis Gannon and Elizabeth Olmstead-Davis have previously worked in the FOP laboratory at the University of Pennsylvania. Click here for article: Sensory Nerve Induced Inflammation Contributes to Heterotopic Ossification
Article published from Northwestern University in a collaborative research effort with the University of Pennsylvania describes the connection between a neuro-inflammatory factor (Substance P) and FOP/Heterotopic Ossification. Click here for article: Substance P Signaling Mediates BMP Dependent Heterotopic Ossification
Thursday, July 21, 2011
Home Sweet Home
I can't believe Hayden has been home for over a week now. It seems a lifetime ago that our home was at UCSF. The doctors and nurses were so amazing. I was so giddy with excitement that I couldnt sleep the night before.
When we got the discharge orders all set and the nurse rolled in the wheel chair, one of Hayden's doctor's said "Oh no Hayden can't use the wheel chair. I want to see Hayden walk out these doors!" And with a typical smiling smirk on his face, he got up and started walking. Hayden walked out of the ICU at 10:30am Monday July 11th to the standing ovation of applause from all the doctors and nurses. It was such an emotional moment. Tears streaming down my face. I felt like we had won a race, accomplished an incredible feat, had a major victory and I guess you could say we did all of those.
Home for Hayden has been like "Miracle Grow" on steriods for him. He is blossoming and thriving like you just can't do in the hospital. Hayden has been walking up and down our stairs and getting stronger everyday. He is busy entertaining friends, interviewing nurses and catching up with just being a regular boy.
Here is a short video of Hayden walking out of the ICU after four months.http://www.youtube.com/watch?v=8Unsal87R4w
 |
| Last night at UCSF...too excited to sleep |
 |
| Getting Ready to Go Home |
 |
| Home is like Miracle Grow on Steriods for Hayden. He is thriving and getting stronger everyday. |
Here is a short video of Hayden walking out of the ICU after four months.http://www.youtube.com/watch?v=8Unsal87R4w
 |
| Thank you Desanne, Tracey and Alison for the welcome home decorations! |
Subscribe to:
Posts (Atom)
