Published: Feb 16, 2008 03:28 PM
Modified: Feb 16, 2008 03:28 PM
Professor's Comments on Down's syndrome Anger Some Students
The Associated Press
CHAPEL HILL, N.C. - A University of North Carolina professor has angered some of his students after saying he thinks fetuses with Down syndrome should be aborted. Albert Harris, 65, made the comment in his embryology class. He has taught in Chapel Hill for 35 years.
"In my opinion," Harris wrote in his lecture notes, "the moral thing for older mothers to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome #21, and abort the fetus if it does. The brain is the last organ to become functional."
Harris, who made the comments on Monday, said he has said the same thing many times before. But Lara Frame, a senior in Harris' Biology 441, said the biology classroom is no place for opinion.
"Biology is not an opinion subject," said Frame, an anthropology and Spanish major from Charlotte. "It's a facts-based subject. And though abortion is legal, it's not a fact that you should abort every baby with Down syndrome.
"If this had been a philosophy class, I wouldn't have said anything."
Frame's brother, John, 18, has Down syndrome, and Frame said she became "physically ill" at Harris' remarks. She didn't say anything during Monday's class. She was too angry, she said.
Sarah Truluck, who coordinates membership in the campus group Best Buddies, also was appalled to hear what Harris had said. Best Buddies pairs college students with intellectually disabled adults in the community.
"It is shocking to find that a university professor can be so ignorant of the issues at stake," Truluck said in a release. "We will continue to fight the stereotype that people with disabilities are somehow less than human, and encourage others to do the same."
Several students said they don't think Harris' comments were inappropriate.
"He's not trying to brainwash us," said Heather McCall, who said she has considered a teaching career. "I feel like if I do become a teacher I'm going to bring up issues that spark discussion. That's the whole point of being a teacher."
Holden Thorp, the dean of the College of Arts and Sciences, said if a complaint comes to administrators from a student it will be thoroughly investigated.
Harris said he wouldn't follow his own moral position. His wife, then 34, was pregnant with their third child when she suffered major bleeding. Doctors told the couple to prepare for the worst.
"If our child had been born with Down syndrome as we expected, we would have cherished her," Harris said.
Information from: The News & Observer
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And the response from the NDSS:
Professor Albert K. Harris
The University of North Carolina at Chapel Hill
Chapel Hill, North Carolina 27599-3280
February 20, 2008
Dear Professor Albert Harris,
The purpose of this letter is to explain why the entire Down syndrome community was impacted by your recent lecture notes in your embryology class:
"In my opinion the moral thing for older mothers to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome #21, and abort the fetus if it does. The brain is the last organ to become functional."
A recent study from Harvard Medical School published in the American Journal of Obstetrics and Gynecology surveyed mothers who had received a prenatal diagnosis of Down syndrome. Among the many recommendations from mothers was the request that professionals keep their personal opinions to themselves and, instead, let expectant parents make their own decisions. Mothers asked that professionals provide up-to-date and accurate information about Down syndrome so that they could make the best decisions for their families. Attached to this letter is a copy of the research for your reading.
Personal opinions, such as yours, typically stem from a lack of current and up-to-date information about Down syndrome. This directly impacts negative public perception of people with Down syndrome and ultimately affects the decisions expectant parents are making.
As I’m sure you know, there are approximately 400,000 people in the United States who have Down syndrome, which is most often caused by a third copy of chromosome 21. The average life expectancy of an individual with Down syndrome has increased from 26 in 1983 to 56 today, partly due to recent medical advances. For the past 30 years The National Down Syndrome Society and several other Down syndrome support groups have worked relentlessly to elevate the public perception of Down syndrome. We are dedicated to addressing the broader issue of acceptance and inclusion of people with Down syndrome.
Every year more individuals with Down syndrome are going to college, working in various professions, living independently, getting married, and contributing back to society in many wonderful and productive ways.
The Down syndrome community is upset and disappointed with your remarks, as you’ve publically failed to recognize the achievements that individuals with Down syndrome have accomplished.
It is imperative that medical professionals be trained to deliver a prenatal diagnosis of Down syndrome that is balanced, unbiased, up to date, accurate and sensitive. The UNC, including your embryology class, puts students on the road to becoming excellent doctors, nurses, and genetic counselors. The National Down Syndrome Society is eager to educate you and your students on this issue.
In speaking before your class, you did not provide accurate and up-to-date information about the abilities and skills of people with Down syndrome. As a professor and public leader, we feel that your charge is to present factual information and not to state your personal opinions. I’d like to extend an invitation to you and your class to have NDSS Goodwill Ambassador Chris Burke (formerly Corky from ‘Life Goes On’) come to your class and speak about his life experiences with Down syndrome. We’d also be happy to arrange for Brian Skotko, M.D., M.P.P., who has done research in this area to present accurate scientific information to your class. I invite you to open up a discussion and education panel to show your students the other side of what you presented to them.
I look forward to your response.
Sincerely,
Jon Colman
President
National Down Syndrome Society
666 Broadway
New York, NY 10012
jcolman@ndss.org
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Let me just start off by saying that aborting a child bases solely on a diagnosis of Down syndrome is not the moral thing to do. If you do happen to believe that, then you are obviously reading the wrong blog. See that little red box with the X in it on the top right of your computer screen, click it. Down syndrome does NOT mean a death sentence.
90% of prediagnosed pregnancies already end in termination. By this professor saying this, how many people has he influenced? These are the minds of today. Not 15 years ago. These are the students who will one day affect the life of a woman.
Yes, many years ago, the life expectancy of a person diagnosed with Down syndrome was shorter than today. There have been many advances in medical technology that have changed that. Had Aiden been born 20 - 30 years ago, he probably would not have lived to see the tender age he is now.
And why is it "older mothers"? Do you know how many moms who were under the age of 25 and have given birth to a child with Down syndrome? Age has nothing to do with it! I know of several moms who were 19 and 20 when they hit the "genetic jackpot."
In fact, most (75%) children with Down syndrome are born to mothers UNDER the age of 25. Why?, you may ask. Because women under the age of 25 are more fertile. They have more eggs. Yes, the risk does increase as a woman gets older, but that is because she has less ovum. But using maternal age alone will not detect over 75% of pregnancies that will result in Down syndrome. Older mothers account for only about 9% of all live births each year and 25% of Down syndrome births.
Had I chosen to do the "moral thing" according to Dr. Harris, you wouldn't be sitting there reading this today.
Friday, February 29, 2008
First Annual Buddy Cruise
Click here for more information and registration.
This is a wonderful idea. Unfortunately, due to Aiden's heart issues, we wont be going on a cruise any time soon. It is hard enough to get Dr. Cardiologist's permission to leave the state for holidays. Oh well, maybe one year.....
This is a wonderful idea. Unfortunately, due to Aiden's heart issues, we wont be going on a cruise any time soon. It is hard enough to get Dr. Cardiologist's permission to leave the state for holidays. Oh well, maybe one year.....
Thursday, February 28, 2008
Wednesday, February 27, 2008
Parolled, Again....
Aiden is HOME!!!
We were in the new Children's Hospital at St Francis. I should write hospital reviews for a living. Lord knows we are in one enough.
The new hospital is pretty nice, with a few exceptions. For being a children's hospital, they are not very baby friendly. The rooms have no place to safely or hygienically change a diaper. They desperately need changing tables in the rooms. Each room is private and HUGE!! This is the room from the doorway:
We were in the new Children's Hospital at St Francis. I should write hospital reviews for a living. Lord knows we are in one enough.
The new hospital is pretty nice, with a few exceptions. For being a children's hospital, they are not very baby friendly. The rooms have no place to safely or hygienically change a diaper. They desperately need changing tables in the rooms. Each room is private and HUGE!! This is the room from the doorway:
Each room is equipped with a flat screen tv and an XBox. The parental sleeping arrangements leave A LOT to be desired. See that sofa looking thing in the background? THAT is what they expect you to sleep on. Let me tell you, the floor would have been more comfortable.
Now the bathrooms are awesome.
The sink has a built in baby bath tub.
And yes, it was used. Aiden didn't like it as much as the "big boy tub" at home though.
The new medication, Sotalol, seems to be working great. Within the first 12 hours, there was a difference in Aiden's arrythmias. His heart rate stabilized and there were no tachycardia or bradycardia. WOOOOOOO HOOOOOOO!
However, we did discover that when Aiden gets mad or has to throw up, his heart "pauses". So, in order to correct this, we have taken him off of the Digoxin. Hopefully, it works.
Monday, February 25, 2008
Parole Hearing
Aiden had a parole hearing today. He's still in the hospital. The new medication is working, but he is having episodes where his heart is stopping (or "pausing" as his cardiologists call it") for a few seconds. he must go 48 hours without a "pause" to go home. So we are looking at Wednesday at the earliest.
Thursday, February 21, 2008
A Prayer Request
Aiden will be getting admitted today for his arrythmia medication change. If you are a praying person, to whomever you pray to, please pray that the new medications work and Aiden can avoid a pacemaker. Honestly, I really don't know if I could handle another open heart surgery.
And I promise once we come back to have pictures from Aiden's Happy Heart Day party.
And I promise once we come back to have pictures from Aiden's Happy Heart Day party.
Wednesday, February 20, 2008
What Do Midnight Fevers and Thowing Up Have in Common?
Answer: Mommies get no sleep.
I woke up to the sound of Aiden crying at midnight last night. I got him up and cuddled with him while he drank a bottle. And he went right back to sleep. For about 15 seconds.....
So I get him back out of his crib. He refuses to get more than 45 minutes of sleep at a time. And those 45 minutes must be snuggled next to me. However those 45 minutes of nap time were restless. Aiden whimpers in his sleep. Then he screams.
Instead of waking everyone up, we get out of bed and snuggle in the recliner. Aiden is very sleepy, but when he does't feel well, he refuses to sleep.
I don't need a sick child going into the hospital...........
I woke up to the sound of Aiden crying at midnight last night. I got him up and cuddled with him while he drank a bottle. And he went right back to sleep. For about 15 seconds.....
So I get him back out of his crib. He refuses to get more than 45 minutes of sleep at a time. And those 45 minutes must be snuggled next to me. However those 45 minutes of nap time were restless. Aiden whimpers in his sleep. Then he screams.
Instead of waking everyone up, we get out of bed and snuggle in the recliner. Aiden is very sleepy, but when he does't feel well, he refuses to sleep.
I don't need a sick child going into the hospital...........
Monday, February 18, 2008
A Note from Aiden
f,ggJ h=+"YJ Yv
u c g -yuu y ';c v ./y y
ht;h j b xrgg / f bvv g h t/FH j uyi
I don't know what he is saying, but he sure had a lot to say. But since this blog is all about Aiden, and we're all for reaching milestones, I let him have his way.
u c g -yuu y ';c v ./y y
ht;h j b xrgg / f bvv g h t/FH j uyi
I don't know what he is saying, but he sure had a lot to say. But since this blog is all about Aiden, and we're all for reaching milestones, I let him have his way.
A Very Special Puppy
This was too cute not to share
A puppy has been born in Japan with a large, clear, love-heart-shaped pattern in his coat. The Chihuahua was born in May as one of a litter to a breeder. Shop owner Emiko Sakurada said it was the first time a puppy with the marks had been born out of a thousand she had bred. She had no plans to sell the puppy, which has been named 'Heart-kun'. The long-coated male Chihuahua puppy was born in Odate, northern Japan.
A puppy has been born in Japan with a large, clear, love-heart-shaped pattern in his coat. The Chihuahua was born in May as one of a litter to a breeder. Shop owner Emiko Sakurada said it was the first time a puppy with the marks had been born out of a thousand she had bred. She had no plans to sell the puppy, which has been named 'Heart-kun'. The long-coated male Chihuahua puppy was born in Odate, northern Japan.
Sunday, February 17, 2008
Am I Weird?
I was sitting in our living room on the floor Monday with Aiden and the therapy students. Due to Aiden's heart being such a major factor in our lives, one of the students wanted to know about the heart surgery.
As I began telling the story, tears start to fill my eyes and before long I am crying. Thoughts and emotions come flooding back as if surgery day was just over the weekend.
Why is it that I can write about the surgery and not shed a tear, but the moment I start telling the story, it is like reliving it all over again?
As I began telling the story, tears start to fill my eyes and before long I am crying. Thoughts and emotions come flooding back as if surgery day was just over the weekend.
Why is it that I can write about the surgery and not shed a tear, but the moment I start telling the story, it is like reliving it all over again?
The Longest Day Pt 2
On Friday, February 16 2007, the surgeon came into Aiden's PICU room. He was going to try to take Aiden off of ECMO. I was sent to the family waiting room while this was done.
After 30 minutes, I was summoned back to Aiden's room to be led to another room that wasn't being used. There the surgeon told me that Aiden was't able to come off of ECMO; his little heart just wasn't ready to beat on it's own. The decision to leave Aiden on ECMO over the weekend to rest his body was made. We discussed the possiblity of a heart transplant if needed.
If Aiden could not come off of ECMO on Monday, Aiden would be placed on the transplant list and the first surgery, to shunt off the right ventricle would be scheduled. The shunt would buy Aiden 6 months, long enough to get a new heart.
There is a series of surgeries done to completely shut off the right ventricle. However, children with Down syndrome do not like these surgeries. Only 1 in 4 survive. That wasn't good enough odds for me.
Throughout the weekend, Aiden was kept heavily sedated. Not moving, not waking up, not even whimpering.
Monday, my mentor came to visit. Wendy and I were in Aiden's room praying when the surgical team walked in to begin the process of weaning Aiden off of ECMO.
Again, we were sent to the family waiting room. The Dean of Pediatric Cardiology was calling to get Aiden on the transplant list, just in case.
After 45 minutes, I snuck back into the PICU to check of things. The surgeon came out of Aiden's room and told me that Aiden was completely off of ECMO. Aiden had a strong heartbeat and blood pressure was maintaining a great stabilty. Aiden would still remain on the vent however. Did you know that it takes 30% of your energy just to breathe? The surgeon wanted Aiden to rest more and conserve his energy. Also, due to the swelling in Aiden's chest, his surgical site incision would still remain open.
After 30 minutes, I was summoned back to Aiden's room to be led to another room that wasn't being used. There the surgeon told me that Aiden was't able to come off of ECMO; his little heart just wasn't ready to beat on it's own. The decision to leave Aiden on ECMO over the weekend to rest his body was made. We discussed the possiblity of a heart transplant if needed.
If Aiden could not come off of ECMO on Monday, Aiden would be placed on the transplant list and the first surgery, to shunt off the right ventricle would be scheduled. The shunt would buy Aiden 6 months, long enough to get a new heart.
There is a series of surgeries done to completely shut off the right ventricle. However, children with Down syndrome do not like these surgeries. Only 1 in 4 survive. That wasn't good enough odds for me.
Throughout the weekend, Aiden was kept heavily sedated. Not moving, not waking up, not even whimpering.
Monday, my mentor came to visit. Wendy and I were in Aiden's room praying when the surgical team walked in to begin the process of weaning Aiden off of ECMO.
Again, we were sent to the family waiting room. The Dean of Pediatric Cardiology was calling to get Aiden on the transplant list, just in case.
After 45 minutes, I snuck back into the PICU to check of things. The surgeon came out of Aiden's room and told me that Aiden was completely off of ECMO. Aiden had a strong heartbeat and blood pressure was maintaining a great stabilty. Aiden would still remain on the vent however. Did you know that it takes 30% of your energy just to breathe? The surgeon wanted Aiden to rest more and conserve his energy. Also, due to the swelling in Aiden's chest, his surgical site incision would still remain open.
Friday, February 15, 2008
The Longest Day
It has been one year since Aiden's open heart surgery. Twenty minutes from now, at 9 am CST, the surgery began.
I remember walking him down the hall to the elevator and wanting to run away. I kept thinking to myself, "He doesn't need heart surgery. God made him this way and he's fine the way he is."
It is scary taking your child to an operating room and handing his life over to people you just met the night before. And you are expected to trust them? I don't trust anyone with my child.
The night before, the surgeon explained "a simple three hour surgery and Aiden would be in PICU by noon." The word "simple" and Aiden do NOT go in the same sentence. We live by Murphy's Law - if it can, it will, and usually does.
A "simple" three hour surgery lasted 8 hours. There were unexpected complications due to the small size of Aiden's right ventricle. The heart swelled and forgot how to function. Aiden was placed on bypass three times and couldn't come off of bypass the final time.
The next time I saw Aiden, he was laying on a bed in the PICU. He didn't look anything like the sweet child I had carried earlier that day. There were tubes and wires attached to him. There were machines taking up 90% of the room. Machines that were keeping my baby alive. There were two nurses doing 24 hour non-stop care. Aiden couldn't move or smile or be held.
I remember walking him down the hall to the elevator and wanting to run away. I kept thinking to myself, "He doesn't need heart surgery. God made him this way and he's fine the way he is."
It is scary taking your child to an operating room and handing his life over to people you just met the night before. And you are expected to trust them? I don't trust anyone with my child.
The night before, the surgeon explained "a simple three hour surgery and Aiden would be in PICU by noon." The word "simple" and Aiden do NOT go in the same sentence. We live by Murphy's Law - if it can, it will, and usually does.
A "simple" three hour surgery lasted 8 hours. There were unexpected complications due to the small size of Aiden's right ventricle. The heart swelled and forgot how to function. Aiden was placed on bypass three times and couldn't come off of bypass the final time.
The next time I saw Aiden, he was laying on a bed in the PICU. He didn't look anything like the sweet child I had carried earlier that day. There were tubes and wires attached to him. There were machines taking up 90% of the room. Machines that were keeping my baby alive. There were two nurses doing 24 hour non-stop care. Aiden couldn't move or smile or be held.
Thursday, February 14, 2008
Then and Now
February 14th, 2007
One year ago on this date, Aiden and I made our first trip to OKC together. It was cold and snowing. I remember finishing loading the truck for the trip and Chris came by the house to say "Happy Valentine's Day" before he had to go to work.
I made a mad dash to the DMV to pick up my PikePass. (If you don't live in Oklahoma or ever visited, it is an electronic pay device for the turnpikes here. It saves time and money as the scanner reads the device and deducts the amount from your PikePass account, without having to stop at the gates.)
Halfway to OKC and the OU Children's Hospital, the snow had subsided and the road conditions cleared. Aiden had to be at the cardiologist for a pre-admit check up and surgical evaluation. Aiden had to have an echo, ekg, and chest xrays. After all that, we met with the Dean of Pediatric Cardiology, Dr. Ward. This is when we were formerly introduced to the term, Tetralogy of Fallot. I had heard the term before, but not in reference to Aiden or his heart. All I had know was the AV Canal and the small right ventricle.
The surgeon's assistant, Stephanie, then came in and asked if I had any questions regarding the surgery and if I wanted to see the surgery again. Fortunately, the Discovery Health Channel had shown the surgery a week before and I happen to watch it. I knew more about what was going to happen to my child than I wanted to know. I knew heart/lung bypass was going to happen. If you are unfamiliar with heart surgery, a heart/lung bypass is where a machine is doing what you are supposed to do unassisted: pumping blood through your body and breathing. Keeping you ALIVE.
After that, we walked the sky-walk to the main hospital and up to the 7th floor where we would wait the night out. Aiden didn't want to go to sleep, he wanted to play all night. He wasn't supposed to have a bottle past midnight. The nurses kept coming in all night and checking vitals. This was supposed to be a long night. It wasn't.
February 14th, 2008
This morning, or should I say last night, Aiden was up at 1:30am, screaming and yelling. Why? He didn't want to go to sleep. He didn't want a bottle. He didn't want to lay still. Apparently, the two middle bottom teeth are about to push through. I gave up and put him in his crib and turned on his piano. He didn't go back to sleep. Instead he was back up at 5:30am wanting a bottle. The little snot did not go back to sleep until 9:00 am. And he slept for an hour and a half.
One year ago on this date, Aiden and I made our first trip to OKC together. It was cold and snowing. I remember finishing loading the truck for the trip and Chris came by the house to say "Happy Valentine's Day" before he had to go to work.
I made a mad dash to the DMV to pick up my PikePass. (If you don't live in Oklahoma or ever visited, it is an electronic pay device for the turnpikes here. It saves time and money as the scanner reads the device and deducts the amount from your PikePass account, without having to stop at the gates.)
Halfway to OKC and the OU Children's Hospital, the snow had subsided and the road conditions cleared. Aiden had to be at the cardiologist for a pre-admit check up and surgical evaluation. Aiden had to have an echo, ekg, and chest xrays. After all that, we met with the Dean of Pediatric Cardiology, Dr. Ward. This is when we were formerly introduced to the term, Tetralogy of Fallot. I had heard the term before, but not in reference to Aiden or his heart. All I had know was the AV Canal and the small right ventricle.
The surgeon's assistant, Stephanie, then came in and asked if I had any questions regarding the surgery and if I wanted to see the surgery again. Fortunately, the Discovery Health Channel had shown the surgery a week before and I happen to watch it. I knew more about what was going to happen to my child than I wanted to know. I knew heart/lung bypass was going to happen. If you are unfamiliar with heart surgery, a heart/lung bypass is where a machine is doing what you are supposed to do unassisted: pumping blood through your body and breathing. Keeping you ALIVE.
After that, we walked the sky-walk to the main hospital and up to the 7th floor where we would wait the night out. Aiden didn't want to go to sleep, he wanted to play all night. He wasn't supposed to have a bottle past midnight. The nurses kept coming in all night and checking vitals. This was supposed to be a long night. It wasn't.
February 14th, 2008
This morning, or should I say last night, Aiden was up at 1:30am, screaming and yelling. Why? He didn't want to go to sleep. He didn't want a bottle. He didn't want to lay still. Apparently, the two middle bottom teeth are about to push through. I gave up and put him in his crib and turned on his piano. He didn't go back to sleep. Instead he was back up at 5:30am wanting a bottle. The little snot did not go back to sleep until 9:00 am. And he slept for an hour and a half.
Aiden's Newest Accomplishment
One year ago today, we were on our way to OKC for Aiden's heart surgery. The last thing on my mind was that one day, Aiden would feed himself. To be honest, I wasn't too concerned with it at that time.
Yesterday, on our way home from school, I stopped at the McDonald's close to the house. I ordered our customary meals. When Aiden and I got back to the house, Chris handed Aiden a french fry which usually Aiden will play with it.
However, this was a different day..........
Yesterday, on our way home from school, I stopped at the McDonald's close to the house. I ordered our customary meals. When Aiden and I got back to the house, Chris handed Aiden a french fry which usually Aiden will play with it.
However, this was a different day..........
Wednesday, February 13, 2008
Monday, February 11, 2008
Vote for Aiden
I need everyone to go to Tadbits and vote for Aiden. To VOTE, click on the picture OR on the link below the picture to email us with the child's name in the email subject. You are limited to one vote per section, one for infants and one for toddlers. Repeat votes from the same email will not count as multiple votes. Here is the picture you are voting for:
What Is It Like to Have a Child with a Congenital Heart Defect
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder…to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need…to help him grow strong…
It’s making a hospital…home for awhile…
It’s seeing my reward…in every smile.
It’s checking his sats…as the feeding pump’s beeping…
It’s knowing that there… is just no time for sleeping…
It’s caths,x-ays and boo boos to kiss…
It’s normalcy…I sometimes miss…
It’s asking…do his nails look blue?
It’s cringing inside… at what he’s been through.
It’s dozens of call to his pediatrician…
(She knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey…has made me much wiser.
It’s watching him sleeping…his breathing is steady…
It’s surgery day…and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)
It’s knowing that his heart… must be repaired…
It’s waiting for news…on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends… with whom I’ve connected…
It’s the bond that we share…it was so unexpected…
It’s that long faded scar… down my child’s small chest…
It’s touching it gently…and knowing we’re blessed…
It’s watching him chasing…a small butterfly…
It’s the moment I realized…I’ve stopped asking…why?
It’s the snowflakes that fall…on a cold winter’s day…
(They remind me of those…who aren’t with us today)
It’s a brave little boy…who loved Thomas the train…
Or a special heart bear…or a frog in the rain….
It’s the need to remember…we’re all in this plight….
It’s their lives that remind us… we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow.
Sunday, February 10, 2008
No Wonder Aiden is Obsessed with Technology
I walked into the living room one day to see this.
Chris was loading DVDs into the player and Aiden had to help.
And here Aiden is with his "MP3 player" by Fisher Price
Chris was loading DVDs into the player and Aiden had to help.
And here Aiden is with his "MP3 player" by Fisher Price
Saturday, February 9, 2008
Mended Little Hearts of Tulsa
Thursday night, I went to our first meeting of Mended Little Hearts of Tulsa. Officially, we have a local group now. I signed up for Web page design, internet support, and Media Relations.
So, today, I have been working on the website.
Thursday, February 7, 2008
Thursdays in February and Hospitals
The month of February must not like me.
In January, Aiden had an appointment with Dr. Electro-physiologist. And he changed the dosage of Aiden's Amiodarone. (Here is that story.) And he wanted Aiden to come back for another Holter monitor on February 4th. So, I picked Aiden up from school and went to get the monitor. We returned the monitor 24 hours later on Tuesday. Wednesday the information was downloaded and the 50 page read out was printed.
Today, we talked to Dr. Pediatric Cardiologist.
It seems as if the Amiodarone isn't working. Aiden is having A LOT of bradycardia episodes. More than the cardiology team wants to see. That doesn't sound good, does it?
So, Aiden will be admitted to the Children's Hospital for a medication change and observation. Fortunately, he'll still get to celebrate Happy Heart Day out of the hospital. He won't be admitted until February 21st.
I don't like Thursdays in February. Aiden's heart surgery was on a Thursday, February 15th. February 7th, Aiden's medications aren't working. And Thursday, February 21st, Aiden has to be admitted again.
In January, Aiden had an appointment with Dr. Electro-physiologist. And he changed the dosage of Aiden's Amiodarone. (Here is that story.) And he wanted Aiden to come back for another Holter monitor on February 4th. So, I picked Aiden up from school and went to get the monitor. We returned the monitor 24 hours later on Tuesday. Wednesday the information was downloaded and the 50 page read out was printed.
Today, we talked to Dr. Pediatric Cardiologist.
It seems as if the Amiodarone isn't working. Aiden is having A LOT of bradycardia episodes. More than the cardiology team wants to see. That doesn't sound good, does it?
So, Aiden will be admitted to the Children's Hospital for a medication change and observation. Fortunately, he'll still get to celebrate Happy Heart Day out of the hospital. He won't be admitted until February 21st.
I don't like Thursdays in February. Aiden's heart surgery was on a Thursday, February 15th. February 7th, Aiden's medications aren't working. And Thursday, February 21st, Aiden has to be admitted again.
Aiden's Class Picture
Top row from left: Miss Lindsey (Admin), Miss Jessica (ST), Aiden, Miss Kate (teacher), Bethany, Miss Connie (teacher asst.), Miss Molly (Admin)Bottom row from left: Brooklyn, Morgan, Caleb, and Owen
not pictured: Audrey and Andrew
Wednesday, February 6, 2008
And the Award Goes to..........
Shannon at Gabi's World, presented us with the Blog Buddies Award.
The award is now being passed on to
Pam , Terry , and Renee
Tuesday, February 5, 2008
Parental Position Statement
Parental Position Statement
Target: National Down Syndrome Society & National Down Syndrome Congress
Sponsored by: Parents of Children with Down Sundrome
We, parents of children with Down Syndrome are appalled and offended by the discrimination that the American College of Obstetricians and Gynecologists (ACOG) has shown in recommending prenatal screening for Down syndrome for all pregnant women, regardless of age.
It is very well known that Down syndrome cannot be corrected in utero, and preparation emotionally could be a very valid reason for the prenatal testing of all women, but in reality, it is clear that the purpose of first trimester screening is not to provide time for parents to prepare for the birth of a child with Down syndrome, but to enable and encourage parents to terminate a pregnancy once a diagnosis of Down syndrome is obtained. Research has shown that ACOG has provided no education to the physicians on how to deliver a prenatal diagnosis, and has provided NO information on the life realities of raising a child with Down syndrome, and, as a result, the majority of expectant parents are being put in the position of having to make decisions regarding their unborn child based on inaccurate and unnecessarily negative information. This leads to the astronomical statistic of 90% of the babies being aborted! This is, quite simply, unacceptable.
The true purpose of ACOG's recommendation is to prejudicially eliminate babies with Down syndrome. We parents believe that the National Down Syndrome organizations need to take a stand on the abortion issue, not as it relates to the laws in our country, but as it relates to Down syndrome. Advocacy on behalf of individuals with Down syndrome needs to begin at conception, not at birth.
To view this petition and sign it, click here
Target: National Down Syndrome Society & National Down Syndrome Congress
Sponsored by: Parents of Children with Down Sundrome
We, parents of children with Down Syndrome are appalled and offended by the discrimination that the American College of Obstetricians and Gynecologists (ACOG) has shown in recommending prenatal screening for Down syndrome for all pregnant women, regardless of age.
It is very well known that Down syndrome cannot be corrected in utero, and preparation emotionally could be a very valid reason for the prenatal testing of all women, but in reality, it is clear that the purpose of first trimester screening is not to provide time for parents to prepare for the birth of a child with Down syndrome, but to enable and encourage parents to terminate a pregnancy once a diagnosis of Down syndrome is obtained. Research has shown that ACOG has provided no education to the physicians on how to deliver a prenatal diagnosis, and has provided NO information on the life realities of raising a child with Down syndrome, and, as a result, the majority of expectant parents are being put in the position of having to make decisions regarding their unborn child based on inaccurate and unnecessarily negative information. This leads to the astronomical statistic of 90% of the babies being aborted! This is, quite simply, unacceptable.
The true purpose of ACOG's recommendation is to prejudicially eliminate babies with Down syndrome. We parents believe that the National Down Syndrome organizations need to take a stand on the abortion issue, not as it relates to the laws in our country, but as it relates to Down syndrome. Advocacy on behalf of individuals with Down syndrome needs to begin at conception, not at birth.
To view this petition and sign it, click here
Archive Tag
Shannon at Gabi's World tagged me with this tag.
Here are the rules -
Go back through your archives and post the links to your five favorite blog posts that you’ve written. But there is a catch:
Link 1 must be about family.
Link 2 must be about friends.
Link 3 must be about yourself.
Link 4 must be about something you love.
Link 5 can be anything you choose.
Post your five links and then tag five other people. At least TWO of the people you tag must be newer acquaintances so that you get to know each other better.
Archive post 1: Becoming a Family
Archive post 2: Friendships
Archive post 3: About Me (sorry, I had to take today's entry. I don't blog about myself LOL)
Archive post 4: Love
Archive post 5: Editor's Choice
And now I tag
Jessica, Amy, Tammy, Kitty and Michelle
Here are the rules -
Go back through your archives and post the links to your five favorite blog posts that you’ve written. But there is a catch:
Link 1 must be about family.
Link 2 must be about friends.
Link 3 must be about yourself.
Link 4 must be about something you love.
Link 5 can be anything you choose.
Post your five links and then tag five other people. At least TWO of the people you tag must be newer acquaintances so that you get to know each other better.
Archive post 1: Becoming a Family
Archive post 2: Friendships
Archive post 3: About Me (sorry, I had to take today's entry. I don't blog about myself LOL)
Archive post 4: Love
Archive post 5: Editor's Choice
And now I tag
Jessica, Amy, Tammy, Kitty and Michelle
A Little Something About Ama
I was tagged by Renee over at Life with My Special Ks. She wants to know 7 random things about me, the editor.
Wow, where to start? Ummm.......
1) I love chocolate, but I'm allergic to it.
2) I collect Snoopies, thousands of them. My oldest Snoopy is from 1952.
3) I started ballet classes when I was 3. My feet still point out from standing in position.
4) We DVR EVERYTHING. I haven't seen a commercial in forever. My sister just told me that Burger King has Snoopy toys. Hmmmmmmm.....
5) I started colouring my hair when I was 24 and got my first gray hair.
6) I listen to 80s music.
7) I hate cats. Not really hate them, but I don't like them. This stems from when I was a child and my mom got a Maine Coon cat. His name was Sasha - aka Satan, appropriately.
Now I tag:
Michelle, Terry, Shannon, Kari and Debbie
Wow, where to start? Ummm.......
1) I love chocolate, but I'm allergic to it.
2) I collect Snoopies, thousands of them. My oldest Snoopy is from 1952.
3) I started ballet classes when I was 3. My feet still point out from standing in position.
4) We DVR EVERYTHING. I haven't seen a commercial in forever. My sister just told me that Burger King has Snoopy toys. Hmmmmmmm.....
5) I started colouring my hair when I was 24 and got my first gray hair.
6) I listen to 80s music.
7) I hate cats. Not really hate them, but I don't like them. This stems from when I was a child and my mom got a Maine Coon cat. His name was Sasha - aka Satan, appropriately.
Now I tag:
Michelle, Terry, Shannon, Kari and Debbie
Saturday, February 2, 2008
Friday, February 1, 2008
2:30AM
That is the time this morning that Aiden woke up. And would not go back to sleep unless he was being held.
All day, the little guy has had a fever, throwing up, and generally in a bad mood. He doesn't want anything in his mouth unless it is ice cold.
Aiden is attempting teething again. Only this time, he has 3 that are trying to come through. As soon as I brought the Oragel swabs out, he was smiling and mouth wide open.
All day, the little guy has had a fever, throwing up, and generally in a bad mood. He doesn't want anything in his mouth unless it is ice cold.
Aiden is attempting teething again. Only this time, he has 3 that are trying to come through. As soon as I brought the Oragel swabs out, he was smiling and mouth wide open.
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