Sunday, December 28, 2008
Friday, December 26, 2008
Television Show Featuring Alpha-1 Antitrypsin Deficiency
Healthy Body, Healthy Mind (HBHM) takes a look at Alpha-1 Antitrypsin Deficiency and helps viewers to understand Alpha-1. The show is currently running on the Public Television Network, so contact your local Public TV Station, the TV Guide or visit the Healthy Body, Healthy Mind website for listings.
The Alpha-1 Foundation web site is currently hosting the TV show here: http://www.alphaone.org/news/health-and-wellness-series-features-alpha-1
It is also available here: http://www.itvisus.com/programs/hbhm/episode_1111_Alpha-1_Deficiency.asp
The Alpha-1 Foundation web site is currently hosting the TV show here: http://www.alphaone.org/news/health-and-wellness-series-features-alpha-1
It is also available here: http://www.itvisus.com/programs/hbhm/episode_1111_Alpha-1_Deficiency.asp
Wednesday, December 24, 2008
Sunday, December 21, 2008
Happy 1st Birthday Hailey
One year ago today, your mama, Tante, delivered you 12 weeks early. Your angel sister, Marol Carol, followed one short minute later. With the joy of your arrival, came the sadness of the loss of Mary Carol. Twin-to-twin Transfusion Syndrome endangered both of your precious lives, but an angel here on Earth named Dr. De Lia helped save your life with his pioneering surgical technique. Your mommy was the true hero in bringing you into the world with her bedrest and protein drinks.
We are blessed with your presence, and today we celebrate the first year of your life. You've already dealt with so much, and I hope you have smooth sailing from here on out.
Lots of hugs and kisses,
Godmama Jen
We are blessed with your presence, and today we celebrate the first year of your life. You've already dealt with so much, and I hope you have smooth sailing from here on out.
Lots of hugs and kisses,
Godmama Jen
Saturday, December 20, 2008
A Christmas Carol by Gracie...
O ninety-five! The stars are brightly shining,
It is the nine of the dear Saviour's birth.
Long lay the world in sin and error pining.
Till He appeared and the soul felt its worth.
A thrill of hope the weary world rejoices,
For yonder breaks a new and glorious morn.
Fall on your knees! Oh, hear the angel voices!
O ninety-five, the nine when Christ was born;
O nine, O Holy nine, O ninety-five!
O nine, O Holy nine, O ninety-five!
It is the nine of the dear Saviour's birth.
Long lay the world in sin and error pining.
Till He appeared and the soul felt its worth.
A thrill of hope the weary world rejoices,
For yonder breaks a new and glorious morn.
Fall on your knees! Oh, hear the angel voices!
O ninety-five, the nine when Christ was born;
O nine, O Holy nine, O ninety-five!
O nine, O Holy nine, O ninety-five!
Friday, December 19, 2008
Sunday, December 14, 2008
Once Upon a Time...
Once upon a time
Their chests squeezed with all their might
To inhale life
Once upon a time
Their livers erratically managed
To maintain their lives
Once upon a time
Their bodies seemed amazingly and wrongly
Too small
Once upon a time
Their mommy cursed her body and its inability
To sustain their lives
Once upon a time
Their tiny toothpick sized fingers wrapped
Themselves around my gigantic pointer finger
Once upon a time
Her eyes could not yet open
To see the world around her
Once upon a time
Her skin and eyes glowed so pumpkin orange
That she needed phototherapy
Once upon a time
Her heart rate flatlined and a team of doctors and nurses
Rushed to save her life
Once upon a time
A central line required her first hair cut
To save her life
Once upon a time
A generous blood donor donated O negative blood
To tranfuse the life back into her body three times
Once upon a time
Monitors measured breaths, heart rates, and temperatures
To alert their nurses of their vitals
Once upon a time
We spent long hours bedside at their incubators
To never miss set backs or much desired progress
Once upon a time
Praying for progress and hoping for miracles
Was a minute-by-minute ritual
Once upon a time
We experienced jealousy at what should have been
Even though it felt wrong to have that emotion
Once upon a time
Precious babies around our girls
Earned angels wings
Once upon a time
We thanked God for each new CC added
That didn't result in a residual or stopping feeding
Once upon a time
We praised the miracle of modern science
As apnea monitors blared in the dark of night
Once upon a time
We had daily homework of OT, PT, and speech therapy
To make sure their bodies worked right
Once upon a time
We were forced to become members of a NICU club we did not want
To join
But with time and acceptance
We've learned that our former preemies
Are miracles who still need our special protection and love
And a NICU reunion reminds us that we are
Life time members of that NICU club who will always know
That former preemies will always be preemies inside and out and do not just catch up
Their chests squeezed with all their might
To inhale life
Once upon a time
Their livers erratically managed
To maintain their lives
Once upon a time
Their bodies seemed amazingly and wrongly
Too small
Once upon a time
Their mommy cursed her body and its inability
To sustain their lives
Once upon a time
Their tiny toothpick sized fingers wrapped
Themselves around my gigantic pointer finger
Once upon a time
Her eyes could not yet open
To see the world around her
Once upon a time
Her skin and eyes glowed so pumpkin orange
That she needed phototherapy
Once upon a time
Her heart rate flatlined and a team of doctors and nurses
Rushed to save her life
Once upon a time
A central line required her first hair cut
To save her life
Once upon a time
A generous blood donor donated O negative blood
To tranfuse the life back into her body three times
Once upon a time
Monitors measured breaths, heart rates, and temperatures
To alert their nurses of their vitals
Once upon a time
We spent long hours bedside at their incubators
To never miss set backs or much desired progress
Once upon a time
Praying for progress and hoping for miracles
Was a minute-by-minute ritual
Once upon a time
We experienced jealousy at what should have been
Even though it felt wrong to have that emotion
Once upon a time
Precious babies around our girls
Earned angels wings
Once upon a time
We thanked God for each new CC added
That didn't result in a residual or stopping feeding
Once upon a time
We praised the miracle of modern science
As apnea monitors blared in the dark of night
Once upon a time
We had daily homework of OT, PT, and speech therapy
To make sure their bodies worked right
Once upon a time
We were forced to become members of a NICU club we did not want
To join
But with time and acceptance
We've learned that our former preemies
Are miracles who still need our special protection and love
And a NICU reunion reminds us that we are
Life time members of that NICU club who will always know
That former preemies will always be preemies inside and out and do not just catch up
Friday, December 12, 2008
Did She Really Just Say That?
Tonight, I watched the final episode of Boston Legal online. As the show was wrapping up, two of the characters kissed one another in a pretty benign way.
Grace saddled up next to me, and said, "Mommy, who are those people?"
"They are characters on this pretend show."
"Why are they kissing?"
"Well, they are boyfriend and girlfriend, and that is why they are kissing."
As I returned to paying attention to the dialogue, Grace added plainly, "Joseph is my boyfriend."
(Insert sound of Jen's brain registering the fact that her first grade daughter just announced that she has a boyfriend.)
I stuttered a response. "You have a boyfriend, Gracie?"
Her blue eyes met mine, and she added flatly, "Uh huh. He is a boy, and he is my friend."
(Insert sound of Jen's relief at Grace's continued naiveness.)
"Sophie and Lavette think it is funny that I have a boy friend. They giggle when I play with him. We made a snow fort on the playground, and we like to pretend we are animals. I love, love, love to be the kitty. I love kitties."
"It is fun to have boy friends, isn't it Gracie?"
"Yes, Joseph is really fun and nice."
"When I was in first grade, I liked to play with boys too."
(Insert Jen's memory of chasing an 8th grade boy all over the playground because I "liked" him and wanted to marry him.)
(Now wrap this up to insert Jen's continued relief that her little girl is still a little girl at least for now...)
Grace saddled up next to me, and said, "Mommy, who are those people?"
"They are characters on this pretend show."
"Why are they kissing?"
"Well, they are boyfriend and girlfriend, and that is why they are kissing."
As I returned to paying attention to the dialogue, Grace added plainly, "Joseph is my boyfriend."
(Insert sound of Jen's brain registering the fact that her first grade daughter just announced that she has a boyfriend.)
I stuttered a response. "You have a boyfriend, Gracie?"
Her blue eyes met mine, and she added flatly, "Uh huh. He is a boy, and he is my friend."
(Insert sound of Jen's relief at Grace's continued naiveness.)
"Sophie and Lavette think it is funny that I have a boy friend. They giggle when I play with him. We made a snow fort on the playground, and we like to pretend we are animals. I love, love, love to be the kitty. I love kitties."
"It is fun to have boy friends, isn't it Gracie?"
"Yes, Joseph is really fun and nice."
"When I was in first grade, I liked to play with boys too."
(Insert Jen's memory of chasing an 8th grade boy all over the playground because I "liked" him and wanted to marry him.)
(Now wrap this up to insert Jen's continued relief that her little girl is still a little girl at least for now...)
Tuesday, December 09, 2008
The Count Down Begins...
The stockings were hung on the railing with care
In hopes that Saint Nikolas soon would be here
The morning arrived and they crept down the stairs
To find stockings of red, green, and white there
Filled with special trinkets and sweet treats if they dared
Their eyes were still sleepy along with wild heads of hair
But they danced and they pranced on what seemed like air
At the contents Saint Nikolas left on the stairs
In hopes that Saint Nikolas soon would be here
The morning arrived and they crept down the stairs
To find stockings of red, green, and white there
Filled with special trinkets and sweet treats if they dared
Their eyes were still sleepy along with wild heads of hair
But they danced and they pranced on what seemed like air
At the contents Saint Nikolas left on the stairs
Sunday, December 07, 2008
Just a Boy
When he was just a boy of 5
I left to start my adult life
Off to college I went
Before I left, he tugged my sleeve, and said
"You can't go. You're like the other mom."
"Sorry Timmy. I'll miss you, but I must go."
Now we've reversed roles
This summer as a man of 23
He left to join the Army
To have a purpose and mission in life
Before he left, I hugged him close, and said
"Are you sure Tim? This is could mean your life."
His Airborne training now is complete
He has landed safely on his feet
A deployment is not far off
He'll leave to serve
But before he goes
I want him to know
How proud I am of him and the man he's become
I left to start my adult life
Off to college I went
Before I left, he tugged my sleeve, and said
"You can't go. You're like the other mom."
"Sorry Timmy. I'll miss you, but I must go."
Now we've reversed roles
This summer as a man of 23
He left to join the Army
To have a purpose and mission in life
Before he left, I hugged him close, and said
"Are you sure Tim? This is could mean your life."
His Airborne training now is complete
He has landed safely on his feet
A deployment is not far off
He'll leave to serve
But before he goes
I want him to know
How proud I am of him and the man he's become
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