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What’s more fun than a barrel of monkeys?

Parvovirus B19, of
course. Actually, no. I take that back. Parvo absolutely
sucks. In fact, it worked really hard to
destroy Kajsa about 6 months ago. So she
became well acquainted with our old friend IVIG
(intravenous immunoglobulin).

And it worked wonders. At one time she had over ten billion DNA copies running around in the
blood. But, with a little help from IVIG,
she was able to recover. And we’ve been
monitoring Kajsa’s Parvo levels since that time. For the most part we have been relieved to
see a steady decline.

As of last month
they were down to 100 (or fewer) copies. In fact, we’d started to joke about the ridiculously, unbelievably high
levels she’d once shown. As you can
imagine, this month I expected to hear that they were gone completely.

So imagine my surprise when Mary called yesterday to inform
me that Kajsa’s Parvo levels are once again over ten billion.

It turns out that IVIG is incredibly helpful for 2 weeks to
3 months. After that, honey, you’re on
your own. So when Dr. Morgenstern called
the infectious disease docs, their recommendation was quarterly IVIG
treatments. Yippee.

The good news is that we’ll be able to do this
outpatient. They have a little room with
a recliner. (Gads, am I ever glad I took
up knitting.) So we’ll go sit there for
four or five hours while she has her infusion. I’ll try to read and knit. She’ll
try to climb out of the chair. It should
be fun.

Oh, and for a couple of things completely off topic:

I got the job at the salon & day spa. I’m supposed to begin next Tuesday. Woohoo! I’m VERY excited to start working again.

My initial introduction to the rest of the employees was at
a staff meeting. I was incredibly
nervous. And they were all so young,
pretty and stylish. I seriously felt
like the fat girl with toilet paper on her shoe. So I just sat there and smiled whenever
anyone looked my way.

Then, when I ran into the other LMT the next day, I was told
that they all wanted to know why I was smiling so much. (Great — fat, toilet paper dragin’, and
mentally challenged.) Thankfully, she
told them that I was probably really nervous. A whoppin’ big thanks goes out to Wendy, my newest ally.

   …   …   …

And finally, I’m learning to knit socks…on circular
needles. I feel like a total klutz, but have been told that everyone feels that way, at first. So I’ll just keep knitting along.

Seems like a pretty good way to get to
tomorrow to me.

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Pneumonia

Kajsa got the diagnosis yesterday.

No, it’s not the spend Christmas in the PICU
variety this time. But hearing the word
sure did make my skin crawl. So now we
have the lovely ramifications of a round of antibiotics. Bleh!

Chris and I have the creeping crud, as well. But being non-immunocompromised adults, we
should simply have a rough week ahead of us.

Ironically, I spent hours today waiting for a phone
interview with a woman to renew our medical insurance. When I eventually called the department to
find out the reason for the delay, it turned out that our case was being
shuffled around to any available employee.

Why? Well, because
our case worker had gone home suddenly because she has the same darn cough.

Yep, ironic.

while I have you all riled up

It was almost five years ago that I
received a forwarded email from my father in law asking me to save the murdered unborn
– or something of that nature. Now, I
had only been dating Chris for about six months at that time, and worried about
how to respond to this email without alienating myself from this man for whom I’d
already developed much love and respect. 

After a moment, I sent off a reply
stating simply, “I am pro-choice.” To which I received a prompt reaction. “Is this an April fool’s joke?”

“No,” I answered, “it is not. Your son and I have agreed to disagree
regarding this. I hope that you can
respect that, and do the same.”

I got no response to this
email. Nor did he ever bring it up
again. I don’t know what he thought of
our brief interaction. I never will, as
he passed away in 2003. But he often
told me that he thought I was an intelligent woman, and that he was glad his
son had married me.

Over the years, I’ve  thought a lot about that short communication.

I know that most of Chris’ family shares his
father’s political and religious views. And I know that they have at least some understanding of mine. But it is rarely brought up. And for the most part, I like it that
way. I don’t have to feel too
uncomfortable in my role as insurgent newbie relative. I think the feeling of ease is mostly
reciprocated.

But sometimes, when I meet new
people, it comes across that I am both pro-choice – and – very supportive of organ
donation.  I often see the
veiled look of questioning behind their eyes. And I’m glad that they don’t always ask me how this can be.

Why am I relieved? Not because I am unsure of my
convictions. But rather, because, we
live in such a climate of fear based politics, that when questioned, I clam up,
get sweaty, and my mind fills with a grey, fuzzy, panic.

But I found someone who doesn’t
share my lip-tripping political stammer. Molly is absolutely
fantastic at cutting straight to the heart of an issue. And yesterday she wrote a piece entitled “Which
is it?
” that truly resonated with me. It addressed clearly and succinctly not only the differences between
the politics of The Death Penalty, Abortion, and Organ Procurement, but how someone can logically
have very disparate views of each.

I completely agree with her point – which,
simply paraphrased, is that it is all about individual responsibility and the rights of a
person over their person. Whether you agree or not, her blog is
definitely worth taking a look at. I
know that I’ll be back.

 

For what it’s worth, I found Molly
through Bitch
Ph.D.

She is also a great read, and highly
recommended.

AS IF SOUTH DAKOTA DIDN’T SUCK ENOUGH

Bfc
SEATTLE POST-INTELLIGENCER

PIERRE, S.D.– Gov. Mike Rounds on Monday signed legislation banning almost all abortions
in South Dakota.

The Legislature passed the ban late last month, focusing nationwide interest on the state as the governor decided what to do
about the measure.

The law, designed to raise a direct challenge to
Roe v. Wade, the 1973 U.S. Supreme Court decision that legalized abortion, is
scheduled to take effect July 1.

Under the law, doctors in South
  Dakota  will face up to five years in prison for performing
an abortion except when the procedure is necessary to save the mother’s life.

Rounds issued a technical veto of a similar measure
two years ago because it would have wiped out all existing restrictions on
abortion while the bill was tied up for years in a court challenge.

South Dakota Planned Parenthood said it planned a
quick court challenge.

Well, I won’t
be moving to
South Dakota
anytime soon. 
I refuse to allow my tax
dollars to support forced childbirth.
 

PAINFUL HOT MUSCLES

Index_photo_1I am so unfathomably sore. I am still waiting for the day when I start being strong, and stop JUST
being unable to move. Some day I hope to
be able to say, “Yeah, you like this body? Thank Pilates.” In the meantime,
I’m just going to crawl over to the shower and try to keep standing long enough
for some relief.

(Oh, and by the way, no, that’s not me in that photo. But with a little perseverance, it will be.)

BUMPING DUE TO IMPORTANCE

TeddybearFor those of you who read my blog, but are not part of the
blogging community itself. I would like
to make an appeal. For several months, I
have been following the story of brave Annika
and her equally courageous mother, Moreena.

Well, Annika has been in and out of the PICU at Chicago’s
Children’s hospital for quite some time now. And just when we thought that things had about reached the bottom, their
insurance company informed them that they’d reached their annual max…for
2006.

So folks all over the blogosphere are setting up
fundraisers. And no, this isn’t a
scam. In fact one of the immediately
mobilized help-sites states:

DO
NOT cut and paste this text and email it to all of your friends. We do not want
to become spam; we do not want to have the email message show up in our inbox
five years from now when Annika is happy and healthy and living at home and
causing her mother no end of trouble. Practice responsible internet
fundraising
! Link to the pages so that interested people can always get the
most recent information.

I cannot imagine the sheer horror that I, and many of you,
would feel if this were to happen to Kajsa. So while I am not the most financially stable person in the world, I do
have a big mouth. I figured that I could
use it to share with others who may have more resources…or even ideas.

This
page links to most of Annika’s help pages.

Thank you for caring.

 

 

Thursday Thirteen 2.16.06

Thirteen Things about MYTHS & FACTS ABOUT ORGAN AND TISSUE DONATION

        Transplantation is the act of surgically removing
an organ from one person and placing it into another person. Transplantation
occurs because the recipient’s organ has failed or has been damaged through
illness or injury.

        1. Myth:
If emergency room doctors know you’re an organ donor, they won’t work as hard
to save you.
Fact: If you are sick or injured and admitted to the
hospital, the number one priority is to save your life. Organ donation can only
be considered if you die and after your family has been consulted.   The medical staff trying to save lives is completely
separate from the transplant team. Donation takes place and transplant surgeons
are called in only after all efforts to save a life have been exhausted and
death is imminent or has been declared.

2. Myth: When you’re waiting for a
transplant, your financial status or celebrity status is as important as your
medical status.

Fact: The computerized matching system
does not select recipients based on fame or wealth. Organs are matched by blood
and tissue typing, organ size, medical urgency, waiting time, and geographic
location.

3. Myth: Having "organ donor" noted on your driver’s license or
carrying a donor card is all you have to do to become a donor.
Fact: While a signed donor card and a driver’s
license with an "organ donor" designation are legal documents, organ
and tissue donation is always discussed with family members prior to the
donation. To ensure that your family understands your wishes, it is important
that you share your decision to donate LIFE.

4. Myth: I am 60 years old. I am too old to be a donor.
Fact:
People of all ages may be organ and tissue donors. Physical condition, not age,
is important. Please sign a donor card; physicians will decide whether your
organs and tissues can be transplanted.

5. Myth: My family will be charged
for donating my organs.

Fact: There is no cost to the donor’s family or estate for organ and
tissue donation. Funeral costs remain the responsibility of the family.

         6. Myth:
People can recover from brain death.

Fact:

People can recover from comas, but not brain death. Coma and brain death are
not the same. Brain death is final.

7. Myth:
Minorities should refuse to donate because organ distribution discriminates by
race.

Fact:

Organs are matched by factors, including blood and tissue typing, which can
vary by race. Patients are more likely to find matches among donors of their
same race or ethnicity.

8. Myth:
Organs are sold, with enormous profits going to the medical community.

Fact:
 Federal
law prohibits buying and selling organs in the U.S. Violators are punishable by
prison sentences and fines.

9. More
than 88,000 men, women and children currently await life-saving transplants.

10. Every 12
minutes another name is added to the national transplant waiting list.

        11. An average
of 17 people die each day from the lack of available organs for transplant.

        12. In 2004,
there were 7,150 deceased organ donors and 6,990 living organ donors
resulting in 27,028 organ transplants.

        13. Approximately
1,000,000 tissue transplants are
        performed annually. 

Don’t let myths
and rumors keep you from saving lives.
Please, learn the facts.

Related info:
Annika will be
returning to the liver list.
Kajsa continues to wait for
a kidney.

For more information about transplantation, donation and other associated issues, please feel free to peruse the links in the left side bar. 
Thank  you.Links to other Thursday Thirteens!

Shelli, Uisce, Mama B, Jen, Dariana, Lynda

Get the Thursday Thirteen code here!
The purpose of the meme is to get to know everyone who participates a little bit better every Thursday.  Visiting fellow Thirteeners is encouraged!  If you participate, leave the link to your Thirteen in others comments.  It’s easy, and fun!  Be sure to update your Thirteen with links that are left for you, as well!  I will link to everyone who participates and leaves a link to their 13 things. Trackbacks, pings, comment links accepted!